Calm in the Storm

What next

2011-08-04T10:30:00.000-07:00

The diet was a failure. It did NOTHING to alleviate the mood swings. We have had a very unstable 6 weeks. Rapid cycling, one hospitalization, a new medication added, almost a second hospitalization, an emergency meeting with both the doctor and therapist. A severe depression, mixed state, a slight mania, mixed state. I think we're heading for depression again. It's horrible to see her like this. I know she's suffering.

We are running out of options. We now have SIX medications. SIX! Lithium has been mentioned, but it does not seem like a good option in her case. It works better for mania than depression, it works better in cases of bipolar when there are clear genetic links and it doesn't work in rapid-cyclers as well. It has bad side-effects.

We would consider ECT. The quesion is, would E? It's not a pleasant thing to ask someone to do, but it can be extremely effective.

The other option is transcranial magnetic stimulation. Lakeside just got a machine. It has way fewer side-effects than ECT. IF we could talk the doctor and insurance company into it, it might be very helpful. Here's an explanation: Transcranial magnetic stimulation .

I am getting a little desperate. I do not want to lose her to this illness and there are days when I see that as a very real possibility.

I would do anything for my child.

2011-07-03T16:21:00.000-07:00

(published with E's permission)
Two weeks ago E had an serious episode of dysphoric mania (otherwise known as the dreaded mixed state). Mixed state is life-threatening and her life was in danger. She ran away from us on Shabbat morning and was in a terrible state. We drove around the neighborhood looking for her. It was terrifying. When I found her she was paranoid and talking about how people were coming to hurt her and that 'everyone was talking about her'. She had the presence of mind to call for help. She called a teacher from her high school who probably saved her life. He told her he would sit with her and then take her to us. Coincidentally, the teacher and I pulled up to the library where she was hiding at the same time. He persuaded her to go to the hospital with me.

This time it was the adult ward. It turned out to be great for her. The program was way more suited to her needs-suicide prevention, a bipolar group. So instead of the fear she had lived with of the adult ward, she actually had a good experience and they got her stable again.

So, we bit the bullet and decided to do the Modified Atkins Diet (the aptly named MAD diet). http://www.epilepsy.com/epilepsy/treatment_atkins_diet We know that the classical ketogenic was her magic bullet as a baby. We know that people are calling for research into bipolar and a ketogenic diet. There is evidence to suggest it can be very helpful.

Trouble is, it's TEN grams of carb a day to start, then bumping up to 20-25. It SUCKS. It's hard, unappealing, boring, greasy (my whole kitchen is oily), expensive. I decided I am going to do it with her. I am not going to let her go through this alone. Five days into the diet the two of us were ready to rebel. We couldn't look look at another egg. I used to LIKE cheese, not any more. We're craving chocolate and even fruit. The two of us were ready to chuck it in this morning. I could cheat and have grams of carb than her, but I will not do that to her. We do this together. Frank weathered my temper tantrum this morning (basically "I am NOT doing this" with a lot more swear words involved). In his calm way he reminded me that this may be a very real shot at getting off 6 medications that make E sleepy and nauseated all day. That this may be her chance at a normal life. The ketogenic diet was her chance before.

So, as much as it sucks, I WOULD do anything for my child, even this awful diet.

What a Difference the Right Meds make

2011-03-08T07:13:00.000-08:00

A lot of people are asking me how E is doing. She's at college and no longer sees people in our community on a daily basis. I was talking with Dr.P. who was one of her therapists at Lakeside and updating him yesterday when I saw him at school. It was wonderful to tell him how she's enjoying school tremendously, is on the dean's list, participating in activities, planning her future. I would never have thought this possible when she was first diagnosed.
We saw her great new doctor yesterday. A good doctor, and the right medication can make the world of difference. I begin to see that the future can be bright for her. It's still five meds, they still have side-effects, but the allow her to lead a normal life. We can think about her going away to college, we can think about her driving, we can think about her having a career. We're watching a certain celebrity melt-down right now with what looks like a manic episode. I have seen mania like that up close and personal and it upsets me that he is not being given the psychiatric help he needs. It doesn't HAVE to be like that. Things can get better. I've seen it. I see it every single day when my child gets out of bed instead of lying there unable to move, when she makes realistic goals instead of manic ones. When she succeeds.

I love that there are wonderful people like this online.

2010-07-05T10:04:00.000-07:00

E posted this in a forum. I just saw it.

just wanted to say hey and whatsup? hows everyone doing? I'm so hyper right now!!!!!!!! I have been all day and i feel AWESOME! People are soooooo slow though and they say i'm talking too fast but what do they know???? I mean i feel perfectly fine even though i am constantly pacing during class and can't pay attention and stuff, you know? but seriously schools going great Its supposed to ice tonight here!!!!! woohoo snow no school i hope it does!!! it snowed last year in march but never before then weirdly! my dog loves snow she loves to eat it ! everybody do the snow dance :)!!! Hows things going for you??????????????????

And someone was nice enough to try to get her to talk to her doctor. There are so many great bipolar forums out there. This is the BP Hope forum.

Great E! I'm not as high as you, in fact, I am vascillating between down and agitated. My old mixed states. Not very comfortable. Still, I'll insist I'm great. I know what you mean about people being so slow. Sometimes it seems like people are purposely talking slow or moving slow just to irk me. And I feel so "superior". I try to remember that it is part of the mania and that I'm the cause of the feelings, not them. Still, I get this urge to kick people in the behind. One thing, though: even though you're feeling great, you know this is not "stable" for you. Most of us have a hard time calling our p-docs when we're feeling "too good". However, I don't know what happens to you when you get manic. If some of your actions are likely to be hurtful to yourself or others, or if you might behave in an irresponsible way, it's important that you call your dr. for some help, be it medication or something else. If you have a support system, maybe you can get a little feedback from them, besides that you're talking too fast. If others think you may be headed for trouble, it is important to listen to them. Unfortunately, we aren't always in the best position to understand and judge what is going on with us. So, end of lecture. You know what? On the East Coast, it's getting close to 1am. Fortunately, (LOL), I live on the west coast! Sweet dreams!

Letting go..Freshman Camp

2010-06-15T03:08:00.000-07:00

"When their kids were turned eighteen, they'd be on their own, making their own mistakes and being held accountable. But you were not the kind of child I could let fly into the world. After all, what if you fell? And what would happen to you when I wasn't around to catch you anymore?"
Jodi Picoult -Handle With Care

E's university does a four day retreat for Freshman. It's four hours away from my house at a camp ground. She wants to go. I want her to go, but this is not an easy decision.
Four days is eight doses of medication. Two or three missed doses stand between her and the hospital. So we have a child who does not like taking her meds. But we have an adult who needs to go out on her own and do things without me hovering over her all the time.
I worry. I'm a mother-it's my job. There are no cell phones. I can't call her twice a day and remind her, beg her, cajole her to swallow those pills. If she doesn't, who is going to recognize she's manic amongst 50 excited freshmen who may also not be sleeping or jumping around or overly exuberant? What if she decides that the camp ground has plenty of tall trees she can climb and fly out of? What if she decides to walk for nine hours straight? Where would she end up?
I worry because it's my job and then I worry some more that it's not fair to make this someone's else's problem. Do I call the camp staff and tell them "Hey, she might become manic and she's not completely in touch with reality when she does. Have fun with that." Then I have to worry about stigma "We can't take her. We can't have someone mentally ill here."
But ultimately, this is E's problem. E has to have chances to separate, to manage this illness on her own, to realize the consequences of her actions, to make her mother see that she is not my little girl anymore.

Letting Your Children Go, So They Can Grow

E's Graduation Speech

2010-06-07T10:11:00.000-07:00

She was brave enough to acknowledge her bipolar disorder and its impact on her life during high school. I am so proud of her.

Living With Epilepsy

2010-06-06T07:54:00.000-07:00

Living With Epilepsy

I wasn't supposed to walk or talk. That's what the doctors said when I was
diagnosed with infantile spasms. Against all odds the seizures stopped and I
developed normally. I dodged a bullet. But the seizures returned when I was a
teenager. Epilepsy was back in my life, full-force, with the potential to ruin
me or make me stronger.

Living with epilepsy means a certain amount of grieving. I lost a part of my
health, a part of my independence. Will I ever drive? Will I ever go through a
day without worrying about a seizure? Will I learn to deal with stigma?

I may be limited in certain ways, but I can overcome that. I might never drive
but I can show the world that I will not let epilepsy stand in my way. I can
find people to appreciate me and I can appreciate myself. I can have a
successful and productive life.

And it's up to me to do everything I can to stop stigma. I speak out. I reach
out and help others, both with epilepsy and with other disabilities. Living with
epilepsy gives me that obligation. I have a responsibility to continue to
improve and not let my disorder get me down.

So, I don't let epilepsy define me. Sure, it's a part of who I am, but I am so
much more. Never walk or talk? What do you know: here I am ready to go to
college and take on the world-walking, talking, laughing, loving, experiencing.
Epilepsy is but a small part of living.

I have to know this cold

2010-05-27T03:25:00.000-07:00

Most parents ask their children "How did your day at school go?" I ask mine "Are you feeling suicidal?"

I have said many times that mixed state is extremely dangerous. Here's an excellent professional explanation:
"Mixed states are often psychiatric emergencies. Because mixed states contain elements of both manic and depressed mood, the potential for suicidal impulses and actions is greatly increased. Depression and hopelessness may be energized with impulsivity,creating a dangerous catalyst for self-harm."

E's mixed state rapidly became a 'psychiatric emergency' on Tuesday night when we discovered that the answer to the question I have to ask is "Yes, I am."

The next step was to convince her to go to the hospital. She is very reluctant to ever go to the hospital. It meant telling her that this was something I couldn't handle and more to the point, this was something SHE couldn't handle. She finally admitted it and came willingly the next morning . I spent Tuesday night with her sleeping next to me, knocked out with Benadryl. She slept, I didn't.

She's in the hospital and she's safe and now they will get her better.

Here's what to do when you suspect someone is planning suicide:
The biggest myth is that asking the person outright will cause them to do it. not true. Ask them outright, it's important.

What to do when you think someone is suicidal

Take it seriously.

Myth: “The people who talk about it don't do it.” Studies have found that more than 75% of all completed suicides did things in the few weeks or months prior to their deaths to indicate to others that they were in deep despair. Anyone expressing suicidal feelings needs immediate attention.

Myth: “Anyone who tries to kill himself has got to be crazy.” Perhaps 10% of all suicidal people are psychotic or have delusional beliefs about reality. Most suicidal people suffer from the recognized mental illness of depression; but many depressed people adequately manage their daily affairs. The absence of “craziness” does not mean the absence of suicide risk.

“Those problems weren't enough to commit suicide over,” is often said by people who knew a completed suicide. You cannot assume that because you feel something is not worth being suicidal about, that the person you are with feels the same way. It is not how bad the problem is, but how badly it's hurting the person who has it.

Remember: suicidal behavior is a cry for help.

Myth: “If a someone is going to kill himself, nothing can stop him.” The fact that a person is still alive is sufficient proof that part of him wants to remain alive. The suicidal person is ambivalent - part of him wants to live and part of him wants not so much death as he wants the pain to end. It is the part that wants to live that tells another “I feel suicidal.” If a suicidal person turns to you it is likely that he believes that you are more caring, more informed about coping with misfortune, and more willing to protect his confidentiality. No matter how negative the manner and content of his talk, he is doing a positive thing and has a positive view of you.

Be willing to give and get help sooner rather than later.

Suicide prevention is not a last minute activity. All textbooks on depression say it should be reached as soon as possible. Unfortunately, suicidal people are afraid that trying to get help may bring them more pain: being told they are stupid, foolish, sinful, or manipulative; rejection; punishment; suspension from school or job; written records of their condition; or involuntary commitment. You need to do everything you can to reduce pain, rather than increase or prolong it. Constructively involving yourself on the side of life as early as possible will reduce the risk of suicide.

Listen.

Give the person every opportunity to unburden his troubles and ventilate his feelings. You don't need to say much and there are no magic words. If you are concerned, your voice and manner will show it. Give him relief from being alone with his pain; let him know you are glad he turned to you. Patience, sympathy, acceptance. Avoid arguments and advice giving.

ASK: “Are you having thoughts of suicide?”

Myth: “Talking about it may give someone the idea.” People already have the idea; suicide is constantly in the news media. If you ask a despairing person this question you are doing a good thing for them: you are showing him that you care about him, that you take him seriously, and that you are willing to let him share his pain with you. You are giving him further opportunity to discharge pent up and painful feelings. If the person is having thoughts of suicide, find out how far along his ideation has progressed.

If the person is acutely suicidal, do not leave him alone.

If the means are present, try to get rid of them. Detoxify the home.

Urge professional help.

Persistence and patience may be needed to seek, engage and continue with as many options as possible. In any referral situation, let the person know you care and want to maintain contact.

No secrets.

It is the part of the person that is afraid of more pain that says “Don't tell anyone.” It is the part that wants to stay alive that tells you about it. Respond to that part of the person and persistently seek out a mature and compassionate person with whom you can review the situation. (You can get outside help and still protect the person from pain causing breaches of privacy.) Do not try to go it alone. Get help for the person and for yourself. Distributing the anxieties and responsibilities of suicide prevention makes it easier and much more effective.

From crisis to recovery.

Most people have suicidal thoughts or feelings at some point in their lives; yet less than 2% of all deaths are suicides. Nearly all suicidal people suffer from conditions that will pass with time or with the assistance of a recovery program. There are hundreds of modest steps we can take to improve our response to the suicidal and to make it easier for them to seek help. Taking these modest steps can save many lives and reduce a great deal of human suffering.

WARNING SIGNS

Conditions associated with increased risk of suicide

Death or terminal illness of relative or friend.

Divorce, separation, broken relationship, stress on family.

Loss of health (real or imaginary).

Loss of job, home, money, status, self-esteem, personal security.

Alcohol or drug abuse.

Depression. In the young depression may be masked by hyperactivity or acting out behavior. In the elderly it may be incorrectly attributed to the natural effects of aging. Depression that seems to quickly disappear for no apparent reason is cause for concern. The early stages of recovery from depression can be a high risk period. Recent studies have associated anxiety disorders with increased risk for attempted suicide.

Emotional and behavioral changes associated with suicide

Overwhelming Pain: pain that threatens to exceed the person's pain coping capacities. Suicidal feelings are often the result of longstanding problems that have been exacerbated by recent precipitating events. The precipitating factors may be new pain or the loss of pain coping resources.

Hopelessness: the feeling that the pain will continue or get worse; things will never get better.

Powerlessness: the feeling that one's resources for reducing pain are exhausted.

Feelings of worthlessness, shame, guilt, self-hatred, “no one cares”. Fears of losing control, harming self or others.

Personality becomes sad, withdrawn, tired, apathetic, anxious, irritable, or prone to angry outbursts.

Declining performance in school, work, or other activities. (Occasionally the reverse: someone who volunteers for extra duties because they need to fill up their time.)

Social isolation; or association with a group that has different moral standards than those of the family.

Declining interest in sex, friends, or activities previously enjoyed.

Neglect of personal welfare, deteriorating physical appearance.

Alterations in either direction in sleeping or eating habits.

(Particularly in the elderly) Self-starvation, dietary mismanagement, disobeying medical instructions.

Difficult times: holidays, anniversaries, and the first week after discharge from a hospital; just before and after diagnosis of a major illness; just before and during disciplinary proceedings. Undocumented status adds to the stress of a crisis.

Suicidal Behavior

Previous suicide attempts, “mini-attempts”.

Explicit statements of suicidal ideation or feelings.

Development of suicidal plan, acquiring the means, “rehearsal” behavior, setting a time for the attempt.

Self-inflicted injuries, such as cuts, burns, or head banging.

Reckless behavior. (Besides suicide, other leading causes of death among young people in New York City are homicide, accidents, drug overdose, and AIDS.) Unexplained accidents among children and the elderly.

Making out a will or giving away favorite possessions.

Inappropriately saying goodbye.

Verbal behavior that is ambiguous or indirect: “I'm going away on a real long trip.”, “You won't have to worry about me anymore.”, “I want to go to sleep and never wake up.”, “I'm so depressed, I just can't go on.”, “Does God punish suicides?”, “Voices are telling me to do bad things.”, requests for euthanasia information, inappropriate joking, stories or essays on morbid themes.

A WARNING ABOUT WARNING SIGNS

The majority of the population at any one time does not have many of the warning signs and has a lower suicide risk rate. But a lower rate in a larger population is still a lot of people - and many completed suicides had only a few of the conditions listed above. In a one person to another person situation, all indications of suicidality need to be taken seriously.

Hang in there, my darling

2010-05-25T15:56:00.000-07:00

E has been doing so well. for three and a half months she has been relatively symptom-free. She's about to graduate high school next week. Graduating on time. I never thought that would be possible. So you'll understand that I am so upset that she's having a major episode right now. Depression is rearing its ugly head. Not just simple depression, either.. that lovely bipolar mixed depression-racing bad thoughts, inability to get out of bed, irritability- the whole deal. Little bits of mania in there, too- talking really fast, she slept 5 hours in three days, she's bouncy.
E has stayed out of the hospital for a long time. Please don't let her be in there on graduation day. I really hate this illness. I feel helpless. We all do everything we can- E goes to therapy, she reads about her condition, she talks to people, she's even taking her meds, she takes her vitamins and STILL we have episodes. Doesn't seem fair. She wants so much to get better.

Her life should be beginning right now. She should be on top of the world and yet she just wants to lie in bed and do nothing. Nobody should have to deal with this illness, but it's especially hard to watch a teenager go though it.

My Father

2010-05-03T18:41:00.000-07:00

My father died two years ago and I miss him terribly. I want to post something he wrote to E when she was a baby...

Darling Ellie

By her grandfather, William K.

Dearest, darling Ellie,

I know you cannot read this yet but I feel I want to write you so that in the future you will be able to read this letter of love about the courage and efforts displayed on your behalf and to know the love we feel for you. This is a small chronicle of your eventful life.

FIRST THERE WAS JOY!
I met you for the first time at the American Airlines gate in airport. Proud mum, proud grandma and slightly bemused big sister Tovah-wondering about all the fuss caused by this new interloper. Even prouder grandad. I had wondered on the plane how it would be possible to love someone completely new-how could there be room for more love and how does that work? The first sight of your wrinkled face, tiny hands and screwed up eyes answered all the questions. The human heart can expand with love to accommodate and Ellie anyday. You did not do anything spectacular in the ensuing two weeks but each little burp, each little movement was acclaimed as if you had won an Olympic competition.

THEN THERE WAS WORRY
Phone calls-many phone calls across the Atlantic. "Ellie cries for hours."
"Ellie is not doing so well."
The words cannot begin to describe the pain and unspoken worries of your Mum and Dad-made worse by the fatigue induced by long hours of sleeplessness.
Helplessness at this end of the phone but no perception on the impending news.

THEN THERE WAS DESPAIR
A phone call. "Ellie is desperately ill."
"Ellie may not live beyond five years- even if she does, she may never walk."
"Ellie is in the hospital."
While it may not be a manly thing to do, I cried. We all cried. Perhaps, not only for you but for your parents and the frightening future which loomed. We all knew that whatever happened, our love for you would be magnified. Yet there was a feeling of impotence, a need to do something but feeling absolutely powerless to do anything but give our love to you and your grieving parents. We travelled through the night to Paris and caught the first plane to America. Still stunned, still grieving. Empty inside. Angry. "Not our little Ellie." But hoping. You were in the hospital when we arrived, You were SO normal-in fact you were beautiful. We treasure the picture your Mum took of you in the hospital crib. Sad memroies but the tranquil look of peace on your face is a treasured memory. Tests, tests and more tests. Blood sampling. Brain scans, the lot. You have a life-long right to hate people in white coats. Bad news-the doctors confirm a damage in your brain. It is inconceiveable that our pretty Ellie could have something so wrong with her. They prescribed steroids but the side-effects are worrying. We watch you minutely, grasping at straws. "The spasms are reducing." Each of us would have gladly sacrificed ourselves to make you well. But we could not. You and your parents had the battle to fight. Weeks go by, you improve, there is some hope, but all is not well. Your Mum will not accept the situation. G-d bless her. She finds an eminent doctor in Los Angeles who specializes in your syndrome.

THEN THERE WAS HOPE AGAIN
With enormous courage your Mum took you to Los Angeles. What an undertaking. A new, hostile city. A sick baby. Grasping at straws again. "Please make my baby well, please." 13 weeks in Los Angeles. Camping out like gypsies. Trekking around from house to friendly house. Treatment that caused you to blow up like a balloon. Unkind remarks from stupid people about you. Yet, the love for you was magnified. Hoping, daring to hope but deep worry that stayed and ate at our guts. During this period, your Mum went through despair but always had your future in mind. It would have been SO easy to accept the doctors prognosis and give up. She did not and we must thank her for her perserverance always. We arrived in Los Angeles and frankly, my dear, you were not our Ellie. Fat face, thrush, injections. Ellie, mark two was progressing. Grandma spent 6 weeks with you and Mum. Big sister Tovah had arrived too. Poor Dad-13 weeks alone in New Orleans.

THE HOPE CONTINUES
Return to New Orleans. Weeks of hoping that the new medication would work the miracle we prayed for and which you deserved. Visit to France. Staggering around. A beautiful smile. Joy when you did something wrong-pulling up the flowers. Signs that our little Ellie was progressing and trying to emerge from the nightmare. Progress at the autoroute cafe. You held a cookie AND ate it by yourself for the first time. Such small progress-such tremendous progress. We were elated and sad to see you leave. More weeks of phoning and the news gradually deteriorated. The drug was not holding the spasms one hundred percent. Feelings of impotence. We could only offer meaningless encouragment and pray for your future. Then the big gamble, again tremendous courage to undertake an amazing regime, abandon the drugs and put you on a diet.

AGAIN THERE WAS HOPE, BUT FEAR.
Weeks of the new diet. The commitment to controlling-really controlling every morsel you ate. Again, the steadfast dedication. Our Ellie IS going to make it in some way far beyond the original forecasts of the medical profession. We came to New Orleans in February. You were progressing well on the diet. Ellie, mark three had arrived...and how beautiful you are! Finally there was comprehension in your eyes not seen before. You responded to silly things like "How do you do, Ellie?" with a limp but certain hand. This was a miracle and gradually you extended your 'repetoire.' The day you clearly repeated 'B.." constantly in response to our prompting was a day I shall never forget. Each of us had tears in our eyes and a lump in our throats, just too big to allow us to speak. Since then, the news has been good. progress-albeit slow, is there.

AND NOW THERE IS THE FUTURE
Afraid whenever the phone rings. Desperate for good news-"Ellie is doing fine." Wonderful. If, as I pray, you read this in years to come, when memories may have become blurred, you should know that you are our little miracle. BUT a miracle achieved due to the determination of your Mum and Dad not to accept what they were told. For this, I will be eternally grateful.

G-d bless you, my sweet little one. Continue getting well-and let's surprise everyone with your progress

Your loving Grandparents.
France- March, 1994

Bye, darling Neela

2010-04-04T05:10:00.000-07:00

Our dog Neela died two days ago. I find myself crying a lot. My twelve-year-old son has spent the last two days crying on his bed. My ten-year-old daughter has been working out the details of doggy heaven ( Neela will be a puppy again and she's playing with Granddad and she undersdands English, so she knows all the nice things we're saying about her.) E is devastated.

I keep thinking to myself, "She was just a dog. Why are we all so upset." But she wasn't just a dog. She was Neela and she came into our lives at exactly they right time. E was in a depression so bad that she could hardly get out of bed and one where her life was in danger. Neela gave E a reason to get out of bed, and yes, a reason to live. She was sweet and gentle and sustained E through some dark times.

And I am heartsick that my children have to go through yet another loss. Their city and home, their granddad, now Neela. E lost her health and her chance for life to be easy on top of that. Enough.

So, we will all miss you, Neela, you came into our lives for a reason and made them better.

Stigma 2010

2010-03-31T19:44:00.000-07:00

"Who had not heard all the old-style high melodrama of insanity; of the madwoman in Jane Eyre, of Bedlam, of the hundreds of dark house with high walls and little hope, of lesser dramas in lesser memories, and of maniacs who murdered and passed on the taints of their blood to menace the future? "Modern Science" had given the official lie to much of this, but beneath the surface of facts, the older fears remained in the minds of the well no less than of the sick. People paid lip service to new theories and new proofs, but often their belief was no more than the merest veneer, yielding at a scratch to the bare and honest terror, the accretion of ten thousand generations of fear and magic."
-------Hannah Green " I Never Promised You a Rose Garden"

That book was written in 1964. Are we much better at not stigmatizing mental illness in 2010?

I am on an anonymous chat board where moms get together to chat. Since it's anonymous, it is really interesting to see people's real feelings and prejudices come out.

These women are intelligent, well-read, many attended Ivy League Colleges and yet even amongst these so called 'educated' people attitudes about mental illness have not progressed.

Judge for yourself. I am going to quote verbatim from threads where the topic of mental illness came up.

The show 'The Real Housewives of New York ' is very popular with this crowd. They speculate endlessly that one of the characters, Ramona, might be bipolar.

"I think Ramona is bipolar or something. She's freaking NUTS. She has not filter at all"

"Ramona is bipolar, I'd say. She's manic and hysterical then crashes down and is crying and has goosebumps all the space of five minutes"

"Omg, Ramona is bipolar" The replies to this were "Crazy eyed killa" and "She has that scary twitch thing going"

"So is Ramona in need of meds for bipolar or she on drugs which make her loopy?"

"Ramona may be bipolar or schizoid. Jill looks completely different, Ramona looks the same brand of crazy."

"Doesn't Ramona have crazy eyes?" the reply "Batshit. She's definitely bipolar manic/depressive."

On the topic of what to do if you had been dating a man and saw lithium in his medicine cabinet:

"I would run, not walk, away from him."

On the topic of psychotropic drugs:

"Those drugs are NOT NICE. My point is-- rotten choices, be crazy or be drugged."

and "You can't be mildly bipolar"

And someone who posted that her mother-in-law told her she needed to 'grow up and stop being a whiner' when she was hospitalized for bipolar disorder.

And about Lindsay Lohan: "She'll be the next to die, the poor bipolar girl."

And let's play a fun game: "If you had a choice- would you rather be bipolar and super smart or normal and so-so?"

The answers:

"What the question is not even worth an answer. Being bipolar is like a cruel, awful curse."
"Bipolar for sure. You could always come off meds and write a sonnet or direct "Apocalypse Now'

And the response to this story:

"Fucking bipolar people. Stop doing that shit, it doesn't help with the stigma."

That's what we face. Nothing has changed . The good news is that there are many orgnaizations fighting stigma. One is NAMI and a new one that is doing wonderful things is Bring Change 2 Mind.
http://www.bringchange2mind.org/ and http://www.nami.org/

Will the REAL E please stand up?

2010-03-28T05:08:00.000-07:00

I know which E I think is the 'real one'. It's the girl who is confident, engaged, happy, bouncy, funny, sweet, brilliant, creative. She is not the girl who won't get out of bed and has no self-confidence. The one who thinks she can't do anything. She knows her amazing art is good, she doesn't think she's 'stupid' or worthless. She is also not the girl who starts fights with her siblings and talks to me in grunts. She's in touch with reality and not flying high as a kite.

The medication gave us back the real E. Let us see her personality. Let us see her stable and able to think of a regular life and even an amazing life with many wonderful things awaiting her.

She had an epiphany yesterday. SHE began to see that the medication lets her be the 'real E'. She was talking about her plans for the future. She wants to go to Israel for the summer, she wants to spend a semester abroad. She eventually wants to transfer from the local college to one out-of-town. She also finally acknowledged that that won't happen unless she stays on her medicine. She took her pills without prompting last night. She understood.

That's the real E, the one who understands and is mature enough to handle all this. The one who is planning for college and thinking about getting a job this summer. What a difference stability makes. We have emerged from a fog and a nightmare.

A weird Prayer.

2010-03-13T21:04:00.000-08:00

When you have a child with a serious illness, the prayers you offer up to G-d are slightly different than other people raising more typical kids. The first time E took the SAT she was highly manic. SO manic, in fact, that I almost told her not to go at all because I wasn't sure she could sit still and concentrate. Indeed, she was hospitalized two days later not making sense and not completely in touch with reality,not sleeping, flying high as a kite, thoughts racing and speaking a mile a minute. Needless to say, her score could have been a little better.

So, tomorrow is the re-take. She is slightly manic. A nice, wonderful case of hypomania. So here I am praying to G-d that hypomania lasts until Sunday when the SAT is over. That she stays in this state of feeling confident and happy and in a good mood. We don't want her too manic or we have a repeat of the previous sitting. We don't want her depressed so she doesn't care. We don't want her in mixed state so she's angry and upset and hostile. "G-d, let hypomnia last for at least one more day." My prayers have become somewhat unusual. The one prayer I want to pray cannot be answered- "Make this all go away," so for now I'll settle for hypomania.

E Speaks Out Part 4

2010-03-08T09:19:00.001-08:00

When I was first diagnosed with bipolar disorder I was both upset and relieved. Relieved, maybe even a little happy, that I finally had an answer. I had a name for the terrible lows and the devastating highs. Upset because there I was at sixteen slapped with a label and the confirmation of a lifelong illness. I would never again be ‘healthy’. And because bipolar is a mental illness there is a stigma: I’m now crazy, insane, wacko, mental, cuckoo, mad, nuts, of unsound mind, psycho, screwy and more. Except that I’m not. I have goals and dreams…

I would like to be a child psychiatrist. I plan to focus on children because I love them and work well with them. As for the field, I feel I will be right for the job. I enjoy perusing books dealing with psychology and mental illness. Because I suffer from bipolar disorder myself, I feel I will be able to empathize with my patients.

I plan to go to college to study psychology and pre-medicine to prepare myself for medical school and a career dealing with psychological disorders in children and teens.

As a baby I was diagnosed with infantile spasms, a rare and serious form of epilepsy. Because of my parents I was able to get past the seizures with the help of a ketogenic diet and avoided the typical terrible outcome of mental retardation and physical limitations and have since developed normally.

Who would have thought I’d have more health issues to deal with? I use writing as therapy and wrote this poem the first time I was hospitalized at sixteen for bipolar disorder:

Can’t stand it anymore, no/ Gonna kill myself and so/ Into hospital I will go.

Can’t have shoelaces, no/ They’re afraid I might choke myself, so/ Into Community Restriction I go.

Can’t stop cutting, no/ I’m not coping, so/ Into therapy I will go.

Can’t stay out of the hospital, no/‘Cause my brain is messed up, so/ To take my new meds I go.

Can’t control myself, no/ My mind is racing, so/ Into the hospital I will go.

That poem was the beginning of a journey toward acceptance.

I was sixteen and simultaneously diagnosed with basilar migraines and bipolar disorder. With the help of my parents, my school and my friends I learned to manage the two conditions. School had been a problem for me before the diagnosis, as my behavior made it difficult to get work done or sit in class. With medication, acceptance and therapy, I am graduating on time. I have overcome the obstacle of three serious illnesses. I am armed with knowledge about the diseases and a will to take things day by day and look toward the future.

To prepare for education in college and hopefully later in medical school, I have worked hard for my grades and take school seriously. Because I love reading books on psychology, I have developed a good base knowledge. Beyond that, I love to read books of every nature and have a good foundation of general knowledge that will help me in college courses.

I realize that I must find a way to continue treatment throughout college and life. I plan to do so by taking my medication, continuing therapy. I will minimize stress as much as possible and rely on my support system of doctors, family and friends.

Crazy? Not me! Just a girl with bipolar looking to the future.

Some Days It's Just Not Worth Chewing Through the Restraints: Some Bipolar humor.

2010-02-16T06:08:00.000-08:00

T Shirts

Some days it's just not worth chewing through the restraints.
I worry psychiatrists.
I don't suffer from mania, I enjoy it.
Medicated for your protection.
Any moment I'll slip into one of my moods.
When she was down, she was very very down and when she was high she could fly.
I rode the emotional roller coaster at Bipolar Land U.S.A.
I'm not perky, I'm bipolar.
Don't shoot I'm bipolar.
Manic IS my normal.
I'm so happy I could kill myself.
Even medicated, I'm manic.
Stable is a place where horses live.
I've been to both poles. Have you?

My husband says I'm manic, but my boyfriends don't seem to mind.
The voices in my head say you have nice shoes.
A little manic goes a long way.
I have an I.E.P. and I'm not afraid to use it.
If you talk to God, you're religious. If he talks back, you're crazy.
I need meds for my meds side-effects.
Inside this quiet exterior is an unquiet mind.
Beep beep beep, my brain goes beep beep beep.
I used to be sane but I'm better now.

When life hands me lemons I make lemon chiffon pie.
I think therefore I am depressed.
The Seroquel made me eat it.
I feel like I'm in the middle of an episode.
My doctor says I'm bipolar that makes me ~~sad~~ ~~happy~~ sad.
Bipolar disorder has its ups and downs.

Bipolar Jokes

What kind of camera does a manic depressive use? A bipolaroid!

When the new patient was settled comfortably on the couch, the psychiatrist began his therapy session.
"I'm not aware of your problem." the doctor said.
"So perhaps, you should start at the very beginning."
"Of course." replied the patient.
"In the beginning, I created the Heavens and the Earth..."

The Top Ten Reasons that you might have Bi-polar disorder

10. You think Robin Williams should Perk Up.
9. You just bought the Kenny G and Berry Manilow box set just because.
8. You think going to bed on Monday and getting up on Friday is a good rest.
7. What do you mean you’re tired—I had only 3 orgasms!
6. You can not remember the number 7.
5 You know the names of at least three antidepressants and fifteen
mood stabilizers.
4 Your cat’s name is Kay and your dog’s name is Jamison.
3 You bring your own research to the doctor’s.
2 You think a drive from Vancouver, BC to Miami is something to do
in four days.

And the Number One reason you may be Bipolar is:

1 Last night you understood the secrets to the universe and this
morning you are contemplating whether the jam goes on top of the
peanut butter or under it.

You May Be Bipolar If.......

* The sun is too loud.
* Trees begin to chase you.
* You can see individual air molecules vibrating.
* You begin to explore the possibility of setting up an I.V. drip
solution of espresso.
* You wonder if brewing is really a necessary step for the consumption
of coffee.
* You can hear mimes.
* You can achieve a "Runner's High" by sitting up.
* You say the same sentence over and over again, not realizing that
you have said it before.
* You believe that if you think hard enough, you can fly.
* Things become "Very Clear."
* You ask the drive-through attendant if you can get your order to go.
* You say the same sentence over and over again, not realizing that
you have said it before.
* You begin speaking in a language that only you and Chandeliers can understand.
* The less sense matter and matter is more than sense.
* You keep yelling "STOP TOUCHING ME!!!!" even though you are the only
one in the room.
* You say the same sentence over and over again, not realizing that
you have said it before.
* Your heart beats in 7/8 time.
* You and Reality file for divorce.
* You say the same sentence over and over again, not realizing that
you have said it before.
* You can skip without a rope.
* It appears that people are speaking to you in binary code.
* You say the same sentence over and over again, not realizing that
you have said it before.
* You can travel without moving.
* Antacid tablets become your sole source of nutrition.
* You discover the aesthetic beauty of office supplies.
* You have an irresistible urge to bite the noses of the people you
are talking to.
* You say the same sentence over and over again, not realizing that
you have said it before.
* Losing your mind was okay, but when the voices in your head quieted,
it was like losing your best friend.

The Twelve Days of Christmas:

On the first day of Christmas my pdoc (psychiatrist) gave to me
 A dx (diagnosis) of insanity.

 On the second day of Christmas my pdoc gave to me
 Two caps of lithium
 Which made both of my hands all shaky.

 On the third day of Christmas my pdoc gave to me
 Three puvules Prozac
 Two caps of lithium
 And now I can barely see.

 On the fourth day of Christmas my pdoc gave to me
 Four hits of Zoloft
 Three puvules Prozac
 Two caps of lithium
 Now my mouth tastes like soiled undies.

 On the fifth day of Christmas my pdoc gave to me
 Fiiiiiive benzzzzzadriiiiine.
 Four hits of Zoloft
 Three puvules Prozac
 Two caps of lithium
 I will never pay off that shopping spree.

 On the sixth day of Christmas my pdoc gave to me
 Six caps of Dalmane
 Fiiiiiive benzzzzzadriiiiine.
 Four hits of Zoloft
 Three puvules Prozac
 Two caps of lithium
 Whoa, my feet feel so awful heavy.

 On the seventh day of Christmas my pdoc gave to me
 Seven tabs of Haldol
 Six caps of Dalmane
 Fiiiiiive benzzzzzadriiiiine.
 Four hits of Zoloft
 Three puvules Prozac
 Two caps of lithium
 I'm becoming a lock-jawed zombie.

 On the eighth day of Christmas my pdoc gave to me
 Eight wedges Serzone
 Seven tabs of Haldol
 Six caps of Dalmane
 Fiiiiiive benzzzzzadriiiiine.
 Four hits of Zoloft
 Three puvlules Prozac
 Two caps of lithium
 Oh, my head is so sore and dizzy.

 On the ninth day of Christmas my pdoc gave to me
 Nine doses Nardil
 Eight wedges Serzone
 Seven tabs of Haldol
 Six caps of Dalmane
 Fiiiiiive benzzzzzadriiiiine.
 Four hits of Zoloft
 Three puvlules Prozac
 Two caps of lithium
 A tub of water and I'm still so thirsty.

 On the tenth day of Christmas my pdoc gave to me
 Ten more Effexor
 Nine doses Nardil
 Eight wedges Serzone
 Seven tabs of Haldol
 Six caps of Dalmane
 Fiiiiiive benzzzzzadriiiiine.
 Four hits of Zoloft
 Three puvlules Prozac
 Two caps of lithium
 Now all it can do is just pee.

 On the eleventh day of Christmas my pdoc gave to me
 Eleven Paxil dancing
 Ten more Effexor
 Nine doses Nardil
 Eight wedges Serzone
 Seven tabs of Haldol
 Six caps of Dalmane
 Fiiiiiive benzzzzzadriiiiine.
 Four hits of Zoloft
 Three puvlules Prozac
 Two caps of lithium
 I just know he is out to get me.

 On the twelfth day of Christmas my pdoc gave to me
 Twelve shots of Thorazine
 Eleven Paxil dancing
 Ten more Effexor
 Nine doses Nardil
 Eight wedges Serzone
 Seven tabs of Haldol
 Six caps of Dalmane
 Fiiiiiive benzzzzzadriiiiine.
 Four hits of Zoloft
 Three puvules Prozac
 Two caps of lithium
 And a quick ride to Emergency.

Christmas Carols for the Psychiatrically Challenged


SCHIZOPHRENIA -
Do You Hear What I Hear?

MULTIPLE PERSONALITY -
We Three Queens Disoriented Are.

DEMENTIA -
I Think I'll Be Home For Christmas.

NARCISSISTIC -
Hark The Herald Angels Sing (About Me).

MANIA -
Deck the Halls and Walls and House and Lawn and Streets and Stores and
Office and Town ... or Deck the Halls and Spare No Expense!

PARANOIA - Santa Claus is Coming To Get Me.

PERSONALITY DISORDER -
You Better Watch Out, I'm Gonna Cry, I'm Gonna Pout,
then MAYBE I'll tell you why.

DEPRESSION -
Silent Anhedonia, Holy Anhedonia. All Is Calm, All Is Pretty Lonely.

OBSESSIVE COMPULSIVE -
Jingle Bell, Jingle Bell, Jingle Bell Rock, Jingle Bell, Jingle Bell,
Jingle Bell Rock, Jingle Bell, Jingle Bell, Jingle Bell Rock, Jingle Bell,
Jingle Bell, Jingle Bell Rock, Jingle Bell, Jingle Bell, Jingle Bell Rock,
Jingle Bell, Jingle Bell, Jingle Bell Rock, Jingle Bell, Jingle Bell,
Jingle Bell Rock, Jingle Bell, Jingle Bell, Jingle Bell Rock, Jingle Bell...

BORDERLINE PERSONALITY -
Thoughts of Roasting in an Open Fire.

PASSIVE AGGRESSIVE -
On the First Day of Christmas My True Love Gave to Me
(and then took it all away).

I am going to talk about epilepsy again

2010-02-12T10:46:00.000-08:00

This morning I sent E's medical records to the Epilepsy Genome Phenome Project. All her old EEG reports. They start off horribly, "Six month old baby with generalized epileptiform activity. Hypsarythmia- the worst EEG pattern you can have. It still stops my heart to read them. The very last page of E's records still brings tears to my eyes, though. After many medications and two years of the ketogenic diet, the report reads simply, "Normal EEG".

The Epilepsy Genome Phenome Project is a far-reaching epilepsy study going on right now. They are especially intrested in recruiting people who have had infantile spasms. I believe so strongly in participating in medical research. This could lead to manifold benefits for the epilepsy community. please participate if you can.

Our New (Fantastic) Book

2010-01-31T06:07:00.000-08:00

The one I mentioned below.. Facing Bipolar-The Young Adult's Guide.

I am going to quote the introduction because it is so brilliant and brought tears to my eyes. I cut out a couple of paragraphs.

So you've been told you're bipolar, or perhaps you're wondering if you are. You've learned that this diagnosis can mean a lifetime of troubles. You've learned that if you've got it, you might have to take medication for the rest of your life. You understand that the disorder is genetic. You understand that people with bipolar disorder sometimes need to be hospitalized. You didn't ask for this. It wasn't in your life plan.

Perhaps you've had times when you felt so down you couldn't get moving. Keeping up with your work or even getting out of the house seemed impossible. It felt like you were trying to slog your way through molasses with no end in sight. Essentially, your self-esteem was in the pits and you felt awful

Then there were other times when you felt alert and energized. Sleep didn't matter a whole lot and your usual challenges felt like a piece of cake. You felt alive! Images, scents and sounds were so crisp and immediate. Others around you didn't seem to be moving at he same pace, but it didn't matter; little mattered. Yes, it was an exciting time and you enjoyed it. But just as quickly, it was over and you crashed back into the depression, the molasses.

You started thinking that maybe you should end your life. You knew those thoughts weren't you, but at the same time they were you and they seemed the only solution. The confusion was hell. You can begin to see why people say bipolar is trouble. You know this craziness means something is wrong.

If you've sought help, you've probably received plenty of advice about how to manage this disorder. You've been told you should see a psychiatrist. And if you have, you're facing pills. Lots of pills. Take your choice: Lexapro, Seroquel, Depakote, lithium, Tegretol, Lamictal, and others. You've been told that while these drugs can be helpful, you'll also have side-effects such as drowsiness, dry mouth, weight gain, dulling of your emotions, and even dulling of your sexuality. And you've been told you have to take several of them at the same time, forever. Why? if you feel fine or almost fine, why would you take these waist-expanding, thirst-inducing, libido-reducing pills forever? What's that all about?

Besides, if you've only recently been told you're bipolar, you probably think your parents, your loved ones, and the professionals you've been seeing are all exaggerating the bad news. It's like suddenly everyone is telling you the sky is falling! And even if you do all they're asking, you could still be psychiatrically hospitalized for acute depression, suicide attempts, or manic episodes. And in the middle of this bad news, you're encouraged to remain hopeful and not let it get you down. Yeah, right!

As you begin to face the reality of being bipolar, you'll find that one of the toughest challenges is saying goodbye to the person you once thought you would be, especially at a time in your life when you are thinking hopefully about your future. If you're new to the bipolar experience, you're probably somewhere between your midteens and mid twenties, and letting go of your previous expectations about life's direction is hard. It may be even harder than it was to accept your bipolar diagnosis. Worse yet, you may even find that some people will withdraw from you or drop out of sight once you've found the courage to tell them, "I have bipolar disorder." Let's face it, some people are afraid of mental illness. Your relationships will be affected. Almost everything is affected. We know this must all sound pretty grim; it doesn't need to be.

When you move to a new city, you need to know how to have the gas and electricity turned on and the phone hooked up. You need to find the grocery stores and the major department stores. A guidebook is essential, only now it's the Lonely Planet Guide to Bipolar City you need. You didn't choose this destination, but this is where you'll be living. You need to know how to live here. You need to know how to keep your mind stable, how to take care of it, and how to keep it on the right track. In your old world, where you wish you still lived, this isn't the book you would be flipping through in a bookstore. we understand We know this is not a book you want to need.

Our intent is to make Bipolar City less frightening, less lonely, and less strange. You'll come to see it's a different city from the one you were setting out for, but it's still quite livable. The hitch is that you don't get to live there unless you're able to let go of your expectations about the other place you had hoped to reach. And once you come to terms with this loss, once you're able to look around and realistically assess what it takes to make a home in your new destination, then you'll be in a much better position to tackle the reality of bipolar disorder.

Oh Boy

2010-01-31T04:23:00.000-08:00

We have mania again. E is tending more towards mania now. I do admit to liking it a lot until it gets out of control. Last night she was sitting behind me singing. The Itchy and Scratcy show theme, the Lion Sleeps Tonight, Joseph and the Amazing Technicolor Dreamcoat. Christmas carols, Chanukah songs that she moderated to be rude. She also rhyming and speaking a mile a minute. She asked me why I am so slow right now.

I am keeping a close eye. She is supposed to go on a five day school trip on Thursday. One which involves leaving at midnight. Great for mania- let's upset the sleep schedule. I want her to go on the trip. It's the last opportunity before she graduates. I want her to enjoy that and not be in the hospital.
Here's a direct quote from her blog:

hey everybody whatsup????????????? I'm so AWESOME and HYPER and its great but people need to stop being so slow or i think i will punch them but i'm doing so great but i can't concentrate and get distracted and stuff and it snowed so no school yesterday even though sometimes i like school but not yesterday although it doesn't usually snow until march except last year it snowed anyway and my dog ate it and we had a snowball fight and it was awesome! hows things going for you????????!!!!!!!

I do not want to lose my daughter

2010-01-26T06:00:00.000-08:00

Unmedicated bipolar disorder has a very high suicide rate. It is about 25 times the general population. The statistics for unmedicated bipolar say 1 in 4 commit suicide. So, here I have a child wanting to go off her meds. A child who seems to have forgotten just how bad and frightening this disorder was before she was diagnosed and correctly medicated. A child who will end up in the hospital without medicine. I love her too much. I am scared. I am still belaboring this issue because I have no idea how to get through to her. Taking care of someone with mental illness can be so difficult and trying.
Unmedicated bipolar can lead to alcoholism, constant hospitalizations, drugs, suicide, out-of-control destructive mania. This illness destroys lives, no question about it. Especially bipolar 1.

I urge you to read this well-thought out blog article about an unmedicated bipolar man who was shot by air marshalls because he was acting erratically in an airport.
A quote "Having bipolar disorder is like having any other major chronic illness. If a diabetic doesn't take their insulin and then goes for a drive, slips into a coma and kills an oncoming driver, are they any less responsible for that death than an alcoholic who does the same while drunk? Having an illness that has predictable consequences when you fail to take medication requires sufferers to take responsibility for themselves and their actions if they don't take their meds."
http://tidalmoods.blogspot.com/2005/12/bipolars-latest-bow-in-media.html

I bought her this book this morning. Hopefully it will give us some more strategies.

Facing Bipolar will help you navigate the world of medications, therapists, and the up-and-down mood cycles common to the disorder. It clearly explains what bipolar disorder is and provides sound guidance for developing the necessary coping skills to manage its impact on your life.
In this book you'll discover:

How therapy and medications can help
When and how to tell your friends, roommates, and teachers
The four key factors that will bring more stability to your life
How to develop a support network and access college resources
Ways to overcome the challenges in accepting this illness

In Facing Bipolar, a psychiatrist and a psychologist show young adult readers with bipolar disorder how to overcome denial, work toward bipolar stability, and adjust to life with bipolar as they shape their identity in their late teens and early twenties.

She Does Have a POint- But not ENOUGH of a Point

2010-01-24T07:51:00.000-08:00

E is rapid cycling right now. We had an all-out depression a couple of days ago. Usually I dig my heels in for the long-haul when she's depressed. They usually last at least 2 months. What do you know? She cycled out of it in two days. We are going to be talking to the psychiatrist about this on Monday. This is way faster than she's been cycling.

She STILL continues to whine loudly about meds. She doesn't want to take them. Her arguments are still the same: I feel awful on them, they do not help, I don't really need them.

I still continue to try to sway her with logic. Not working.

The poor kid has been on the following meds in various combinations:

Zoloft
Wellbutrin
Cogenitn
Abilify
Effexor
Tegretol
Trileptal
Lamictal
Gabapentin

I think I am missing a couple. But now, now we have a combination that seems to be working so well. The episodes are not nearly as severe. I tell her that maybe that's all we're going to get- better, not gone. I know they have side -effects, I know, I know. I am so sorry about that. I also know that stability is tenuous and finely balanced.

Striking a Balance.

2010-01-20T05:33:00.000-08:00

My daughter is in a mixed state. She feels like cutting, is getting depressed (we haven't seen depression for a while, just manias), having some self-destructive thoughts. Most of this is due to exam stress. Since she's in a very small school, I was able to have them take away the exams and let her be home for the week. On the one hand, right now I thought it was absolutely necessary so she doesn't end up in the hospital. But, I wonder if I am sending the wrong message "bipolar will get you out of difficult things'? I do not know how to strike that balance.

I know life is probably going to be a little harder for her. I just do not want her to get in a habit this young of not facing up to things. I suppose it's like this with any child with a chronic illness. At some point she is just going to have to accept a certain amount of discomfort. To know that many, many times, things are going to be painful and hard.

I really worry about college if this small, nurturing high school is too much stress for E. The college she's looking at is 20,000 students. Teacher do not know her, they are less sympathetic. They don't know how many times she's been hospitalized. They haven't seen her at her 'worst'.

My heart aches that it WILL be tough for her. On the other hand, a lot of people have to deal with difficult situations and it cannot be an excuse not to engage the world and your obligations.

Maybe I am asking too much of a seventeen-year-old? Maybe she needs some slack now and to face more difficult challenges when she is older and better equipped to handle them? Or maybe I am setting the stage for disaster?

Balance, balance, balance. An ironic word to be using in an illness that's very nature is lack of equilibrium.

I would be very interested in ideas.

E speaks out -Part 3 HELP

2010-01-19T04:07:00.000-08:00

What are we in for?
I am a little worried about her. Stress from exams is not a good thing. I worry about college if high school is so hard. We're going to have to get some accommodations, for sure. But the University of Memphis has some good programs in place for mentally ill students.

This is what she wrote:

I want to cut.
I have vague thoughts of suicide.
I learned that the "side effects" like sluggish memory could be symptoms of a mixed state.
I am so restless. I can't sit still.
I'm just not interested anymore. I just don't care.
I have feelings of guilt, worthlessness, sadness.
I feel so anxious.
I feel slowed down and burnt out.
I feel so creative.

Her blog is the one called 'Lithium Tourniquet' Cool title, even though she's never been on lithium.

41) Stand by Those Who Stand By You

2010-01-18T03:51:00.000-08:00

I love a band called Cowboy Mouth and they have a great song called "Take It out on Me".

This is the chorus:

I'll be waiting when the storm is over

I'll be waiting when the fever is high

share your anger and swear that you'll never

take it out on me

let me see you smile

let me hear you scream, for a little while

don't take it out on me

cause there's nobody else around

It speaks to me because one of the things that is hardest to do with a bipolar relative is stand by them, no matter what. When E is angry and irritable, I am usually the one who gets the brunt of it. Sometimes it hurts but I would do anything for her. I have to tell myself many times that it is her illness talking.

I stand by her while she goes through mania and does things that scare me. I saw this wonderful quote "Being close to a manic person is rather like standing near a burning building. You want to rescue the person inside but if you go too close you can get burned." Very, very true. I listen to her, try to calm her down, try to make her safe, that's all I can do.

I stand by her when she's in the hospital. When she feels like hurting herself. I don't understand it all. I don't know what it's like to go through. I just know that she needs a safety net. This is a quote from someone with the disorder "Give the person breathing room. Yes you need to keep aware of impending depression, but acknowledge the grief involved in this battle to come to terms with bipolar disorder. No matter how much you think you know about what your loved one is going through; you don't, you can't...and you never will. No good will come from suggesting that you do. Try to understand their immense pain and give them plenty of room to grieve for everything that once was, and now no longer is."

Because I know something is getting through. Even when she's manic, I think some part of her is listening. I have learned to be pro-active and get her the help she needs when she is having an episode. I have learned to make her get out of bed when she's depressed. I hope I am giving her the tools to cope with this illness her whole life.

I talk extensively to other parents of bipolar teens. We vent our feelings about the way the bipolar child is acting and treating us. We come up with strategies to deal with episodes. We commiserate when hospitalization becomes necessary. Most of all, we tell each other "It's not your fault." I need this because I do not know one person in real life who has a mentally ill child. No one can understand this better than someone dealing with it. I need my online support.

I cannot be her safety net forever. My hope is that she finds a partner who believes in her and stands by her. It's going to take someone patient and understanding. Someone who is prepared to wait out the storms.

Someone somewhere said to 'dream the possibilities' with your daughter. We do dream that she'll be successful, find love, have children of her own. That's only going to happen if we all stand by her.

40) Talking in Abbreviations

2010-01-16T23:44:00.000-08:00

You know you've been at this a long time when you talk in initials and abbreviations and use all kinds of words people have never heard of. I always wanted to learn another language. how many of these can you get without looking at other entries?

IOP
CBT
DBT
ECT
Meds
BPD
PDOC
keto
EMDR
Clanging
SNRI
SSRI
Atypical
EFA
EMU
Migralepsy
TLE
EEG
Pressurized Speech
Hypergraphia
hypomania
SI
ACTH
PET scan
hypsarrhythmia

39) Therapy

2010-01-16T23:29:00.000-08:00

We have enough experience now to know which kind of therapies help us in this journey.

Therapy is more effective during depression. When a person is manic and thinks nothing is wrong, no amount of therapy is going to do much good.You cannot talk your way out of mania. Mania requires medication changes and maybe even hospitalization. Therapy can help a person deal with the aftermath and destruction of mania. In the throes of it, nothing is getting through.

E points out that therapy helps her manage the disorder. It doesn't cure anything, of course. She needs an outlet to talk about things that stress her and about the fact that she has a serious illness to deal with.

We have a great therapist. It's hard to get the right fit right away. We've been with her about a year. She's young and dynamic and has experience dealing with bipolar disorder. We talk to her together and then E talks alone. I can bring up issues like med compliance and the therapist will explore them with E.

When the hospital asked us about helping to find an outside therapist, they thought I was nuts when I said I absolutely did not want a Jewish therapist. Considering that therapy is profession heavily weighted with Jews, this made no sense to them. I had a rationale behind the thinking. I've mentioned before that we live in a smallish city with a fairly small Jewish population. There was too much chance of seeing your therapist at the grocery store or in synagogue. Way too close for comfort. So there I was sounding like an anti-semite "Do not suggest a Jewish therapist to us!" I do laugh at how that sounded now. Still, we did find a great non-Jewish therapist.

Beside the therapist themselves, there is the issue of what type of therapy might be effective. E does a mixture of talk therapy and CBT. Cognitive Behavior Therapy. CBT has been shown to be very effective in treating bipolar. Bipolar can include a certain amount of muddled thinking. CBT is good at getting past that. It's hard work. It requires doing exercise and writing.

Here's the Wiki explanation:
The particular therapeutic techniques vary within the different approaches of CBT according to the particular kind of problem issues, but commonly may include keeping a diary of significant events and associated feelings, thoughts and behaviors; questioning and testing cognitions, assumptions, evaluations and beliefs that might be unhelpful and unrealistic; gradually facing activities which may have been avoided; and trying out new ways of behaving and reacting. Relaxation,mindfulness and distraction techniques are also commonly included. Cognitive behavioral therapy is often also used in conjunction with mood stablizing medications to treat conditions like bipolar disorder.

This is a good book to get started exploring the techniques

http://www.amazon.com/Feeling-Good-Handbook-David-Burns/dp/0452281326/ref=sr_1_1?ie=UTF8&s=books&qid=1263712668&sr=1-1

The approach is useful because it gives a person concrete tools and practical advice. Lakeside hospital was VERY good at giving the teens in their care tools they could use immediately and effectively. This approach is similar. You can talk all you want, if you don't actually DO something to change our thoughts and behaviors, noting much is going to change.

There is another form of therapy that was based on CBT that was developed specifically to target suicidal behavior and self-injury. We haven't had to use that yet, but it's in the back of my mind. It's called DBT or Dialectical Behavioral Therapy:

Dialectical behavior therapy (DBT) is a therapeutic methodology developed by Marsha M. Linehan, a psychology researcher at the University of Washington, to treat persons with borderline personality disorder^[1]^[2] DBT combines standard cognitive-behavioral techniques for emotion regulation and reality-testing with concepts of mindful awareness, distress tolerance, and acceptance largely derived from Buddhist^[3]^[4] Research indicates that DBT is also effective in treating patients who represent varied symptoms and behaviors associated with spectrum mood disorders, including self-injury.^[5] meditative practice. DBT is the first therapy that has been experimentally demonstrated to be effective for treating BPD. (BPD).

It has shown to be highly effective. Self-injury, in particular, is very hard to treat and this method works.

We had tons of family therapy when E was in the hospital. For mood disorders, the whole family has to work together. I had to quit the blame game (I must be terrible mother) and needed tools just as much as E did. Family therapy is used even in the adult ward at Lakeside. Everyone has to be educated, on board and supportive for treatment to work. Family therapy broke down fear and barriers and really did bring us closer together. I am in awe of the dedicated therapists who work miracles every day. I saw a lot of broken families on the path to healing, including ours.

38) Prayer For a Boring Life

2010-01-14T11:56:00.000-08:00

In the past five years we've been though as hurricane, the death of my father, E being diagnosed with 2 serious illnesses, broken bones, my son being hit by a car, a huge shake-up at Fed-Ex where 500 people were fired in one day.

Before the hurricane, I admit to a certain amount of ennui. Now I pray for boring.

I have to tell myself to gain perspective.

Things are good. The good outweighs the bad by far. The hurricane was awful, yes, but we ended up in a better situation than before. I still have my friends from New Orleans, but I have tons of new ones here. I love my job, I am going to school to be a psych nurse. We own our own house, which is something we'd never have been able to do in New Orleans. I have this cartoon framed on my kitchen wall to remind me of what's important.

My dad dying was devastating to me. He was one of those people you would swear would live forever. Tall, strong, smart. He was an a amazing person. He was born very poor in the East End of London. he worked his way up to become a top executive at Union Carbide. He lived in four countries and traveled to 60 more. My siblings and I got to live in many places and travel extensively. He was a loving husband to my mother and a loving father to all three of us. I had a weird thought while we were around his bedside watching him die of cancer. I was there with my brother and sister and I thought how he made us feel like we were all only children. He was at every concert I sang. He was at every sports event my siblings participated in.

When I grew up, he continued to be a guide. I could call him about everything from how to grow roses to how to survive a hurricane. How do we buy a house? he knew the answer. He was largely self-educated and never went to college, but he knew more than most people I know.

I lost him, but at least I got to have this amazing father in my life.

My son was hit by a car last week. He's fine. Could have been so much worse. Bruising and scrapes- that's all. I keep telling myself- that's ALL!

So what's a few broken bones? An inconvenience, that's what. nothing more.

We weathered the shake up at Fed-Ex and are doing ok in a tenuous economy. My husband's job provides us with excellent health insurance. I cannot imagine having a very sick child and not being able to afford decent care.

E has two serious illnesses. They teach me a lot. We are closer as mother and daughter. We're closer as a family. We have insights that we didn't have before. We know we've been through hell, everything else pales in comparison. I have a 'no big deal' attitude to things that would have floored me previously.
We have had experiences and met people we never would have met. There's a whole bipolar community. I reconnected with the Epilepsy Foundation. I am trying to advocate for people with mental health issues.

I have so much- five great kids, a home, a great husband, loving siblings and mother, great in-laws, support, friends. Things are good.

37) Positive Role Models

2010-01-13T18:26:00.000-08:00

In a previous post I said that support groups were a little problematic for me because there were too many people who were not handling their bipolar disorder. Whose lives HAD been destroyed by the illness. I talked about positive bipolar role models.

One obvious choice is Kay Redfield Jamison. She has severe bipolar 1 and is now one of the world's leading experts on the disorder. She has written many books about the illness, including the memoir An Unquiet Mind.

http://www.moodletter.com/KayRedfieldJamison.htm

I am a HUGE Stephen Fry fan and have been for years. I love the show QI, which he hosts. Here's a little clip:

http://www.youtube.com/watch?v=Md34r2f0uVM

I was excited to find out he is very open about his bipolar disorder and had made a wonderful documentary called "The Secret Life of the Mani-Depressive"

Here's a little excerpt. The whole thing used to be on youtube, but I do not see it now. The DVD is worth buying.

http://www.youtube.com/watch?v=AQkE56eFyk4

Even though she is not suffering from bipolar herself, Glenn Close works hard to bring understanding of the disorder to the public. She has a video campaign that seeks to remove the stigma of mental illness. Her sister has bipolar disorder and this is a cause that she believes strongly in. She has a wonderful website with videos recounting waht it's like to have a mental illness or to care for someone who does.

http://www.bringchange2mind.org/

Jane Pauley is another example of a successful woman who has this demon to fight.

http://www.nami.org/Template.cfm?Section=Spotlight_1&Template=/ContentManagement/ContentDisplay.cfm&ContentID=27127&lstid=604

Obviously Carrie Fisher is a name that a lot of people associate with this illness. I have to give a shout out to her because she can actually make me laugh about it. Her memoir Wishful Drinking is hilarious. She describes a 'bipolar parade' that she imagines which had me in stitches.

http://search.barnesandnoble.com/Wishful-Drinking/Carrie-Fisher/e/9781439102251

36) So, How Are We Doing On This Checklist?

2010-01-12T03:31:00.001-08:00

OK, I think. Let's see:
-----------------------------------------------------------------
Ten Things You Should Know About Bipolar Disorder
John McManamy
Friday, January 08, 2010

Last week, as a Question of the Week, I asked:

If a newly-diagnosed individual asked you what ten things he or she needs to
know about his or her condition, what would you tell that person?

The answers I received should be printed out for distribution to everyone newly
diagnosed with bipolar. Those of us well-versed in our diagnosis can also
benefit from a timely review.

1. Acceptance

Be kind and gentle to yourself and forgive yourself because it's NOT YOUR FAULT.
Don't assume you will feel this bad the rest of your life. It's easy to think if
your mood is in the bottom of the pit, it will stay there. Our moods shift, and
a depression always lifts. Don't be discouraged.

Not our fault! So many emotions are connected to this illness that that is very hard to remember at times. I asked over and over what I had done wrong when she was a child. Finally I accepted that this is an illness like any other. I wouldn't have blamed myself if she had had diabetes.

You will not always like what the psychiatrist or therapist says. On the other
hand, sometimes the truth just plain hurts. Accept the fact that the euphoria of
a good mania is probably over. Be ready to apologize a lot. Be patient with
yourself. Accept that your family and friends won't understand what you are
going through, unless they, too, have bipolar.

2. Become Your Own Expert - Know Your Illness, Know Yourself

Become an expert in bipolar disorder and medications. Educate yourself, read,
read, read. Arm yourself and the people closest to you with all the information
that you can get. Bipolar will not fix itself, and medication will not fix it
alone. This will take years, and even after that you will still have bipolar.

E thinks I am obsessed with bipolar. She's right. I cannot rest until I know everything there is to know. This means that when she was diagnosed I read about 40 books and progressed to reading medical papers. I am STILL learning. I read everything I can. Blogs, books, papers, facebook groups.

Try to gain a certain degree of objectivity when you "see yourself" behaving
certain ways. Try stepping back and observing your own thoughts. Instead of
"being the gears in your head," step back and watch them turn. Pay attention to
your daily, hourly mood. Talking therapy is very useful for learning how to deal
with your highs and lows.

As an observer, I do pay attention to E's moods. What my problem is is knowing how to interpret them. Is she manic? Is she depressed or is she acting like a teenager. I'll figure it out one day.

3. Know Your Meds

Be meds smart. When you are first diagnosed, and after major episodes, taking a
certain type (or level) of medication that "dampens" your emotions can be a good
thing. However, feeling like a zombie all the time is not sustainable. Also, be
sure to talk to your doctor about other possible medication (including
combinations) if you feel that you are constantly disconnected (emotionally)
from the world.

Meds are a huge issue in this house. I am very sympathetic when E says they make her feel like crap. We have been through many medication changes. When we reach stability, I am neurotic about keeping it. I stress if she misses a dose. I stress if she says she doesn't want to take them. Stability is rather tenuous. I am so fearful of upsetting the balance. In the back of my head, I wish I did not have to hand my child handfuls of pills everyday, but I do.

4. Find a Psychiatrist You Can Work With, Then Work With Him or Her

Find a psychiatrist that works with you - not against you. Keep going to the
psychiatrist and be honest with him or her. That is the only way he or she can
truly help you. Be honest about how you feel and what you are experiencing.
Nothing about how you feel is dumb, crazy, or less important - they are just
symptoms. Take your medicine as directed and don't stop it till you and your
doctor talk about it. If you are having a side affect that you don't feel is
right call the doctor immediately - don't wait.

If you have read our early story, you know how critical this was to us. The first psychiatrist was completely wrong for us. There is a huge amount of fear associated with this diagnosis. You need a doctor who can alleviate that fear. Most of all, you need a doctor who will LISTEN.

5. Pay Attention to Fundamentals

Resolve to take your meds on time. Resolve to exercise regularly. Resolve to eat
healthier. Resolve to sleep on a regular schedule and bring routines into your
life. Resolve to manage stress. Know your triggers, set limits and boundaries.
Resolve to get control of destructive behaviors such as jealousy and anger.
Remember to take time out to take a big breath and regroup.

We try to reduce stress as much as we can. We work with E's school to give her the least amount of stess possible. They have been marvelous at helping her.

6. Stay Connected

Isolation kills. Find plenty of friends you can call on at a moments notice, and
don't be afraid to call them. Involve yourself in support groups. Help others,
serve in your community. If you believe in God, read scripture, pray, attend
services. If you do not believe in God, think of formulating your own brand of
faith.

This is a big issue for E. When she's depressed, she tends to ignore her friends, sit in her room and do nothing. I have physically lifted her out of bed on occasion. I have forced her to go to events she didn't want to go to. I force her to go to synagogue. I think she hates me at the time. Afterward, I think she realizes that it was a good thing.

7. Recognize Your Strengths; Find Your Own "Normal"

Bipolar is not entirely an illness. The "illness," horrific as it may be, may
also awaken you to your greatest strengths. Through an openness to learning, you
can grow into a truly amazing person. This takes time, and it can seem
impossible to imagine a positive outcome sometimes. Some doctors have it in mind
that you should be "normal," but you need to be whatever comes naturally to you.
If you are not allowed to shine in one way or another (such as in art or work)
then you are constantly battling yourself and the world around you. Be
passionate about something, and that passion can become a support for you.

I think E is beginning to realize what an amazing girl she is. She is extremely talented both in art (she won an art contest- http://www.expressionsofcourage.com/winners2009.html ) and in writing. She thinks very deeply and has amazing conversations with her teachers and rabbis at school. She is a very passionate person. One day I think we'll be reading books she wrote.

8. Pets

Cats and dogs make great counsellors (as long as they're not actually speaking
to you!).

Neela, our dog is so dumb that we cannot help but be in a good mood around her. Give her a dog biscuit and she buries it in the ground for later. Dog- they DISSOLVE! Buy her an $80 dog house and she won't go in it even if it's really cold. Hey DOG, there are blankets and pillows in there. Why do you want to sleep on the flowerbed? We love her.

9. Keep Hope Alive

Remember you're not alone. Yes, this is an inherited disease, yes, stress can
trigger an episode, but you can function very well when you have all the tools
available at your disposal.

Hope. I DO have hope. E is a teen still. Her brain is not fully developed yet. I am hopeful that her rapid cycling will abate. I am hoping that we'll get the meds just right. I am extremely hopeful that she'll learn to manage this illness. I've seen so much improvement in just one year that I really do think we can get through this.

10. Finally

Don't throw and break your dishes...they get very expensive to replace!

http://www.healthcentral.com/bipolar/c/15/100292/ten-bipolar-disorder

35) E Speaks Out: Part 2

2010-01-11T05:58:00.003-08:00

When I first got diagnosed with Bipolar disorder I was both upset and relieved. I was relieved, maybe even a little happy, that we finally had an answer. We had a name for the terrible lows and the devastating highs. Upset because here I was at age sixteen thrust with a label and the confirmation of a lifelong illness. I would never again be 'healthy'.
And because it was a mental illness there is a stigma. And if we don't fight it it will only get worse. I'm now crazy, insane, wacko, mental, cuckoo, mad, nuts, unsound mind, psycho, unbalanced, screwy and more.
Except, that I am not.
In fact, some of the greatest and most creative people in the world suffered from bipolar, including:

Menachem Begin, Prime Minister of Israel
Napoleon Bonaparte, emperor
Edgar Allen Poe, writer
Sir Isaac Newton, physicist
Dolly Parton, singer
Sigmund Freud, psychiatrist
Victoria, British Queen
Vincent Van Gogh, artist
T.S. Eliot, poet
Queen Elizabeth I of England
Ralph Waldo Emerson, writer
Alexander the Great, king
Hans Christian Anderson, author

These are just a few. The list goes on and on.
The truth is that bipolar people and people with mental illness in general are no more violent than the rest of the population, and maybe even less so. There exist many more myths like this against people with mental illness. Mental illness should be viewed in the same way as physical illness.
Stigma hurts. It stops people from getting help. They fear becoming labeled as "crazy" or "insane". Slapped with a label of a mental illness means discrimination everywhere, especially in the workplace.
Stop the stigma.
Speak out.

34) Now What?

2010-01-10T07:12:00.000-08:00

I have a confession to make- I think the name of this blog is a misnomer. It was chosen by an editor when I wrote the first three entries for WebMD.

I am NOT calm. I rant and rave and cry A LOT. Often I don't feel like I can handle this burden. I do ask "Why me?" A lot. Why do things keep happening to me? Am I supposed to be learning something from bipolar disorder?

I have to realize that I am going through the same grieving process as I did when E was diagnosed with infantile spasms. I am sure everyone is familiar with the five steps of grief by now:

1-Denial-"this can't be happening to me" No crying. Not accepting or even acknowledging the loss.

2-Anger-"why me?", feelings of wanting to fight back.

3-Bargaining-bargaining often takes place before the loss. Attempting to make deals with God to stop or change the loss.

4-Depression-overwhelming feelings of hopelessness, frustration, bitterness, self pity, mourning loss of person as well as the hopes, dreams and plans for the future. Feeling lack of control, feeling numb. Perhaps feeling suicidal.

5-Acceptance-there is a difference between resignation and acceptance. You have to accept the loss, not just try to bear it quietly. Finding the good that can come out of the pain of loss, finding comfort and healing. Our goals turn toward personal growth.

My baby was still with me physically, but things had definitely changed. I was giving up the hopes and dreams I had for a healthy baby. I was giving up security. I was potentially giving up being able to have future children. I was giving up a career to care for a sick child.I was ranting and raving at the unfairness that a six-month-old baby had to suffer.

The future loomed uncertain and looked pretty bleak.

But at some point you have to realize that you cannot spend your life in stage 2. You have to get on with things.

After a while, I made it to stage 5. I was in the stage of finding the good. I started a Yahoo Infantile Spasms group, For a very long time it was just me and one other mom. Now I have over 2,000 families on my list. If ever I get down on myself and think I am not worth all that much, I think about that list and the good it's done.

http://health.groups.yahoo.com/group/infantilespasms/

What stage am I in with the bipolar diagnosis?

I am beyond the anger and grief and just plain stupefaction that we had to deal with ANOTHER serious illness. How far beyond? Not sure. I do slip backwards quite frequently.

I write this blog. It's part of acceptance. I try to connect other bipolar parents. I try to educate people about mental illness.

I'm getting there. I know this is something that is not going to go away. It's up to me what I do with my circumstances. It's up to me to make this the best it can be. It's up to me to totally stand by my child.
It's up to me to find some meaning and move on.

33) Zap, Zap, Zap (maybe).

2010-01-08T03:55:00.000-08:00

First person accounts of living with bipolar disorder are extremely helpful to me as an 'outsider'. One of the first accounts I read was Andy Behrman's book Electroboy
http://www.electroboy.com/

In retrospect, that probably wasn't the best book to start off with. First his description of bipolar includes a life that was shattered, out-of-control and destructive. Second the book deals with ECT, or electroconvulsive therapy (formerly known as 'shock therapy').

ECT as a possible treatment for bipolar is a little difficult to contemplate when it could be your child hooked up the electrodes. I remember when E's therapist brought it up in the hospital. My shocked reaction (no pun intended) was "You're kidding? They still DO that?"

Like everyone else, I had images of shock therapy from such movies as One Flew Over the Cuckoo's Nest where it was used as a punishment and looks terrifying.

Popular movies and literature have seriously damaged the reputation of a treatment that can help bipolar sufferers when nothing else has helped.

ECT is fairly safe. The one big side effect is that it can impair your short-term memory. So? the drugs also have side-effects and depression can be deadly. There are pros and cons to weigh with everything. Sometimes this illness means making some really tough decisions. Are there cognitive declines afterward? Research suggest that there are. On the other hand, suicide's side-effect is being dead.

What if E wants to have children later? ECT may be the only form of treatment she can have then.

Of course, ECT is not given to patients under 18. Because of the negative associations, no doctor or parent needs to be seen as if they forced an under-aged child into this treatment.

So, what about when E is 18? Will we consider it, ever? We are planning to get power of attorney over her, so we will able to make some decisions as to her treatment if she is in a state of mind where she cannot do so for herself. Would we do THIS to her? There have been times when she's been so depressed that I wanted to beg them to do it now. To let her get some relief. But, there's no way we would ever do this unless every single person was on board. We'd do this as a last resort.
That's why I try things like sunlamps and vitamins and change her meds-I don't want it to come to ECT.

And then there's a part of me that says "What are you so scared of? You know this could really help her?" I answer back to myself "It IS a frigtening treatment. I've been conditioned to see it as barbaric. I know that's not true, but old assocations are hard to break."

Then there's the question of inducing an artificial seizure in someone who already had seizures. Her neurologist said it was OK. Hmmm, for all these years we've been trying to stop seizures. This is all so very counter-intuitive.

So, as you can see, I waffle on this subject. I read and read. I get conflicting views. So luckily for us, things are not yet at a point when ECT would be considered.

What about E herself? She knows this exists as a possibility. She doesn't seem too scared by it. She would have to make 90% of the decision. She would have to do her own research and come to her own conclusions.

Let me present some opposing views:

In favor:

http://www.medhelp.org/lib/ect.htm

http://www.electroboy.com/electroshock-therapy.shtml

Opposed:

http://www.healthyplace.com/depression/shocked-ect/ect-electroconvulsive-therapy-homepage/menu-id-1362/

http://www.breggin.com/index.php?option=com_content&task=view&id=40

Indeed, an extremely difficult decision to make.

32) E Speaks Out: A First Person Perspective.

2010-01-07T04:20:00.000-08:00

Perspective.

Lakeside

Can’t stand it anymore, no
Gonna kill myself and so
Into the hospital I will go.

Can’t have no shoelaces, no
They’re afraid I might choke myself, so
Into Community Restriction I will go.

Can’t stop cutting, no
I’m not coping so
Into therapy I will go.

Can’t see my family no,
Except twice a week so
To my 5-minute call I will go.

Can’t stay out of the hospital, no
Cause my brain’s messed up so
To take my new meds I will go.

Can’t control myself, no
My mind is racing so
Into the hospital I will go.

I wrote this poem when I was still a little resentful of having been put into the hospital. I was admitted once for being depressed and the other time for being manic. When I was admitted the first time I was so manic that it didn’t faze me one bit. In fact I was laughing the whole time. But once I was no longer so deep in mania all I wanted to do was leave. The hospital wasn’t all that bad but there were definitely many parts I did not like.
When I got there, the first thing that happened was to give me a drug test and a security check. Then they took everything that I might use to harm myself, including shoelaces. Later they would give us only short pencils in “school” so we couldn’t stab ourselves, and erasers weren’t allowed either (I never knew you could “burn” yourself with an eraser).
If you misbehave then you will go into Community Restriction or CR. You sit in a desk the whole day by yourself, copying “terms” and their meanings from their program, such as addiction, insanity and “king baby” (a selfish adolescent attitude).
As for therapy, we got a lot of it. Besides for individual therapy, we received family and group therapy as well. Also, one of two interning psychologists in the hospital talked to me as well throughout my stay. One of my big issues was cutting. Through the therapy I learned why I did it. But that did not stop me from doing it. In the hospital I would scratch my skin with my fingernails until it was bright red and painful since I had no access to sharp objects.
One change I did not like (and still do not like) was the introduction of new medications that would be modified more than ten times in short while. My attitude towards them has not differed much since then. I like being hypomanic. I hate trying to remember to take them. The idea that it is only the meds that keep me out of the hospital does not please me. It makes me feel like my brain is somehow screwed up. I do not like dealing with the side effects: frequent heartburn, sluggishness, dry mouth etc.
And then after a couple of weeks I was finally released. It was all I wanted by then—to just go home and be better. Although I would miss the security of the hospital, more than that I just wanted to go on with my life.

Mania

When I was manic I talked extensively about going to Alaska for college. I was planning to move there a couple years before starting university to establish residency so I could be charged the in-state tuition. I planned to support myself and save up with a job at Petco. Another time I spoke often of my plans to move to Iceland. I had the perfect get-rich-quick scheme: I would grow watermelons in different shapes (I had elaborate methods thought up of how to accomplish that) and sell them to Japan for $80 a piece. At the time I thought that that these ideas were brilliant.
Mania is fun. At least in the beginning it is. People have told me it is similar to being “high” (I’ve never done drugs so I wouldn’t know). Except for those times when I felt just plain irritable and hostile, I felt mainly euphoric. The smallest objects were miracles. Everything in the world made perfect sense. I had incredible energy. I felt more creative than ever. I was confident. Talkative.
But then it got out of control. I was all over the place; I could not sit for class and instead walked/ran around the school building. I was spewing out grandiose ideas like the ones above, a mile a minute. I don’t even remember half the stuff I did from days straight with little to no sleep. My thoughts were racing faster than ever. Even then I denied it. To me, nothing was wrong. I was still elated. I was as bad-tempered as an angry bull, picking fights with my siblings. I must have been failing at least 90% of my classes. And still, everything was perfectly fine. Of course, my family and friends differed in their viewpoints and I swiftly found myself in the hospital with a diagnosis of bipolar disorder.

Cutting

Although cutting is most often associated with borderline personality disorder and “emo” kids, there are plenty of bipolar sufferers who self-injure as well. Cutting was a big problem for me. Knowing the reasons behind it did not mean I stopped doing it. I’ll admit to doing it PARTLY for attention, although not for attention at all in the beginning. (Even if someone is doing this for attention, the fact that they feel they need to resort to this to get attention indicates a major problem). But mostly, it simply made me feel better. And there were numerous different ways that it did. For example, when I was feeling numb and empty it reminded me that I could still feel something, and the blood proved to me that I was still alive. When the despair and hopelessness took over, I often cut. It was a sort of rush of endorphins that made me feel great—temporarily anyway.
They say that at about the eighth cut you are addicted and that certainly held true for me. Whenever I saw a sharp object or cuts on someone else (even non-cutting cuts) or a piece of glass I got the impulse to cut, and I still do, albeit to a lesser extent than before. In a way it took over my life. My thoughts focused on planning my next cut, where and when.
It was almost a ritual. The cuts were always thin and parallel to each other and each was done slowly and precisely. I would make the cut and then go over it a second time. I always cut at night except when my depressions got severe enough; then I had to do it several times throughout the day.
Now I feel I have shrugged off this painful “addiction” (at least for now). In all I probably cut off and on for about two years.

31) Take Your Vitamins

2010-01-05T03:29:00.000-08:00

While I do not think vitamins can 'cure' bipolar, I do think they have a place in treatment. I have done a lot of research about what to supplement. The first obvious one for a young girl on an anti-convulsant is calcium. We heard an expert of anti-epileptic/mood stabilizers speak and he said that they can leach calcium out of bones.

Next, there is evidence to suggest that the B vitamins can help with mood. They are implicated in the manufacture of neurotransmitters. At the very least, they can boost energy to help a person get through a manic or depressed state. E takes B6, B12 and magnesium. The B vitamins work better in conjunction with magnesium.

Fish oil is fairly well-know by now to help elevate mood. Again, it would be rash to take ONLY fish oil, but it does have a benefit as an add-on.

I hate giving her extra pills to take-god knows she takes enough-but I am definitely in favor of trying things that can't hurt and may very well help.

Here's an article from a reliable source that is not trying to sell you their $70 bottle of vitamins that you could get at the drug store for $10.

http://psychcentral.com/lib/2007/vitamins-for-bipolar-disorder/

30) And More Humor- This Affects the Whole Family

2010-01-03T11:45:00.000-08:00

My son (who was 11) had to write a version of the Three Little Pigs. His is called The Three Little Humans.. He wrote it when E was first hospitalized.

There were three little humans living with their mom. She said “You are eighteen, you have to go to college” The first one and the second one slacked off in class but the third one got good grades. When it came time to graduate the three little humans got their jobs. The first two worked as janitors at the MHA so they had close to nothing in their paychecks. The third one majored in drafting and design.

Since the first two got little money they made cheap houses. The first one made his out of bamboo from the side of the school. The second one made his house out of the same thing the school is made out of-cardboard. The third one used his skills from college to make a house out of brick, cement and wood. He built a really sturdy and strong house.

When the cannibal came there was trouble! He went to the first human’s house and said “Let me in, human.” The first human knew the person outside was a cannibal so he said “Not by the hair on my chinny chin chin.” The cannibal said “I’ll kick and kick this house down.” He kicked the bamboo house down and the little human went running to the second human’s house. So did the cannibal.

When the cannibal got there he said to the humans “Let me in!” but they did not let him in. The cannibal said “OK but I am going to kick and kick your house down” and he did. Both of the little humans ran to the third human’s house. The cannibal was right behind them. The little humans ran into the house. The cannibal knocked on the door and he said “Let me in, little humans.” They said “No!” So the cannibal kicked the house and hurt his toe. In his anger he ran as fast as he could into the door. He was knocked out. The little humans brought him to Lakeside Behavioral Health System hospital where Mr. George gave him therapy and he went to group sessions where he learned how to control his anger and not to eat people. The cannibal and the humans lived happily ever after, but he is not a cannibal anymore because of the therapy. Now he is just ‘Bob’.

29) I Did Make Myself Watch This

2010-01-03T06:57:00.000-08:00

This is heartbreaking and every person who takes care of someone with this illness has this possibility in the back of their mind.

Boy Interrupted:

And an interview with his mother

http://www.huffingtonpost.com/regina-weinreich/boy-interrupted-interview_b_249964.html

28) TAKE YOUR MEDS!

2010-01-03T06:42:00.000-08:00

One thing that is very hard for me and my husband to understand is E's reluctance to take her meds. My husband, F, is a mathematician/computer programmer. He's extremely logical and he can't understand someone behaving irrationally. She asks her all the time "Don't you KNOW that the medication helps you?" Then he asks me "Why does she do that? Why can't she see that it helps?"

I have tried to explain that this is a fairly common problem in mental illness. I try to explain that when's she manic, she not rational in the slightest and she feels 'good', so why would she need meds, according to her? I try to explain that when she's depressed, she thinks they are 'not helping' and that she'd be better off without all those horrendous side-effects.

I also have some explaining to do to E. I tell her that without meds she WILL end up in the hospital. That I don't think she's 'a two year old' when I watch her take them. That I can't trust her is she's thrown away meds in the past. Trust is something to be earned. That I DO sympathize that they make her sluggish and tired and dizzy. That she may NEVER be completely without symptoms, but the meds make her closer to the middle ground. Without them she is either suicidal or psychotic.

Med compliance is one issue that scares me a lot. She will not be able to live by herself is she does not take her meds. I am scared that she'll commit suicide if the depression is not mitigated by the medication. That ECT might be in her future if she gets to the point where she's not functioning.

I have a feeling that people are not listening to me when I explain all this.

So, I'll let some people with bipolar disorder do the explaining
http://bipolar.about.com/od/complianceissues/a/sfe_stopmedsbad.htm

27) Funky Mixed States

2010-01-01T02:48:00.000-08:00

E is hypomanic right now. She's very giggly, she's bouncing all around the house. She has tons of energy. She cleaned my car for me yesterday without being asked. She's singing, dancing. She is still able to concentrate and read and is sleeping, so this is not full mania. She still makes sense when she speaks. I confess to really enjoying this state. She's fun. The crushing depressions break my heart. It's nice to see her bouncy and hopeful and feeling good.

But I am holding my breath and watching. Since she rapid cycles, I don't know when this will end and it WILL end abruptly. Is it going to be a full-blown mania? Is it going to be a crash into depression? Or will it be the worst- the dreaded mixed state.

Mixed state is the most dangerous phase of bipolar. The person has a mixture of depression and mania. So she'll have racing thoughts, but they'll all be bad. She'll become belligerent, angry. She'll pick fights. She'll take it out on me (and I do confess to once getting angry with her and telling her that she had not right to do that after I stand by her through everything). This is the stage where it is hardest for me to see that she has an illness and is not doing this on purpose.
This is the state where it's hardest to stand by the bipolar person. This state takes all my strength and resolve.

So, I am waiting and wondering and hoping I can enjoy this happy E for just a while longer.

Some Definitions:

Rapid Cycling: Rapid cycling, according to the American Psychiatric Association's Diagnostic and Statistical Manual, occurs when a person experiences four or more mood swings or episodes in a twelve-month period. An episode can consist of depression, mania, hypomania or even a mixed state.

E gets WAY more than 4 a year. They come every few weeks. Depressions last the longest- they can be two months or more. Mixed states last about 2 days to a week. Mania has to be stopped in i's track, but it usually builds over a period of 3 weeks. Mania normally leads her to being hospitalized. Hypomania , for her, is ususally a few days.

Hypomania: (from Wikipedia) (literally, below mania) is a mood state characterized by persistent and pervasive elevated or irritable mood, and thoughts and behaviors that are consistent with such a mood state. People experiencing hypomanic symptoms typically have a flight of ideas, a decreased need for sleep and/or rest, are extremely outgoing and daring, and have a great deal of energy. However, unlike full-blown mania, those with hypomanic systems are generally fully functioning. Specifically, it is distinguished from mania by the absence of psychotic symptoms and by its lower degree of impact on functioning.

This is a fantastic article about what hypomania really is
http://www.healthcentral.com/bipolar/c/15/1484/bop-drop-ideas-pop/

What I read says this occurs in bipolar 2, so E may just be on her way to mania and not truly hypomanic.

Bipolar 1: Bipolar I Disorder is also known as Bipolar 1 or Bipolar Type 1. According to the definition outlined in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), Bipolar I Disorder, considered the most severe form of this mental illness, is "characterized by one or more Manic or Mixed Episodes, usually accompanied by Major Depressive Episodes."

When my girl gets an illness, she doesn't do so halfheartedly. She had one of the worst and most devastating forms of epilepsy, so why break the trend with bipolar?

Mixed State: In the context of mental disorder, a mixed state (also known as dysphoric mania, agitated depression, or a mixed episode) is a condition during which symptoms of mania and depression occur simultaneously (e.g., agitation, anxiety, fatigue, guilt, impulsiveness, irritability, morbid or suicidal ideation, panic, paranoia, pressured speech and rage). Typical examples include tearfulness during a manic episode or racing thoughts during a depressive episode. One may also feel incredibly frustrated in this state, since one may feel like a failure and at the same time have a flight of ideas. Mixed states are often the most dangerous period of mood disorders, during which substance abuse, panic disorder, suicide attempts, and other complications increase greatly.

Oh, yeah.. gotta love that mixed state.

26) Other forms of Support- Support Groups

2009-12-31T14:19:00.000-08:00

We have attended both epilepsy and bipolar support groups in the past. The epilepsy group tends to me more information focused. This is the kind of group that helps me the most. I need to learn about drug interactions, how to deal with power of attorney. It is useful to talk to people about their experiences, but we have found that this can have a flip side in our situation.

The bipolar group was a difficult experience for us. I am reporting our experience only, I know they help a lot of people and I know they have saved people's lives-I watched it happen in one group. The person contemplating suicide showed up for the next meeting. But for us we started to find that we were amongst people who were NOT coping well with their bipolar. People who were staying at home in bed when the depression got bad. People who were losing jobs. E was the youngest person there and we had many discussion afterward about trying not to let bipolar wreck her life. We needed to see people who had managed that, but I don't think they are the ones that go to support groups.

In the end, it got to be too much for both of us. We tried to find some very successful bipolar role models and read their experiences. I am NOT trying to put down support groups in any way. I am just relating our experience. We did gain a lot from the bipolar group: recommendations for doctors, information about drugs, strategies for coping. Maybe we both were not ready. Maybe it was that particular group, I am not sure. Maybe it was all still too raw and emotional.

25) Do You Have a Good Support System?

2009-12-31T04:25:00.000-08:00

When E started to get sick, I was doing my best to hide what we were going through from everyone. The stress of trying to do this is unbelievable. I imagined all kinds of scenarios. I thought we would be judged, shunned. I thought people might not let their children be around ours. I thought the school might tell us she had to leave.

But this cannot be kept quiet forever. The dam broke. At the very worst of E's initial depression, I finally cracked. I was crying all the time, I was not sleeping. I finally had to let some people in on our 'secret'.

Initially, three of my best friends knew. They calmed me down, they listened, and they gave me sound practical advice. They were there whenever I needed them.

This was critical because I could not speak to my family at this time. My dad was dying and there was no way that I could burden them with our problems.

Later, after my dad died, I finally told my family what was going on. They have been nothing but supportive to both of us. Loving and kind and concerned.

After a while it became critical to tell other people what was going on. E is in a very small girl's school-only 30 girls. She had been doing things at school that were frightening to the adults and teens around her. How is a teacher supposed to react when one of her students is talking about suicide in her papers? How is a principal supposed to react when her student will not get off the couch in the lounge, or is cutting in the bathroom?

E's school responded in a remarkable way. Every teacher keeps an eye on her and reports suspicious behavior ("E told me she had been wandering the neighborhood all night. I think you should know this.") Her principal has gone above and beyond the call of duty. She has rabbis and teachers at school that she talks to all the time and who tell me how she is doing. Her friends tell me if anything seems wrong. They also take her illness in their stride and do not make a big deal over it. They know where she is if she has to be hospitalized and they welcome her back to school as if nothing has happened.

Then we agonized over whether or not we should tell the community at large. We live in the South and are Orthodox Jews. The community is tiny. It's very hard to hide things, even if you want to. We also wanted to make sure the truth was out there. In a small community, rumors start very easily. We were also slowly, but surely, coming around to the view that if we hide this illness, WE are further stigmatizing it. So, I am very open and honest about what is going on.

Guess what? NOBODY judged us and many, many people do everything they can to help us. They listen, they let me cry, the bring us food when E is in the hospital. My boss is generous with letting me have time off to go to doctors. The outpouring of love has been amazing. I also hope that our story might help other parents who might be dealing with a teen with depression, suicidal thoughts or other psychiatric issues. There is support out there, it takes courage sometimes to admit that you need help, but when you do, things get so much better.

We also have tons of online support. Facebook has been a great resource.Even old friends from high school have plenty to contribute. I have made friends through the bipolar groups. There are plenty of online resources.

The hospital became a huge provider of support. Lakeside hospital does what they do incredibly well. Family therapy, group therapy, individual therapy: all of it helped pull us through a very dark time. It's also nice to know there is somewhere to turn when things get very bad. And I was SO reluctant to hospitalize her, seems so foolish in retrospect.

Luckily for us, one of the therapists at Lakeside coincidentally free-lances at E's school. He was an invaluable resource and made the liaison between the two institutions easy. One night when E was in inpatient, we came an hour late for a family group therapy session. It was our only chance to visit E for a couple of days. Dr. P let us back into a conference room and brought E to see us. I never forgot this act of kindness.

When E is in family therapy one question they always ask is "Do you have a good support system?" My answer is always a resounding 'YES!"

24) Back to Basics Part 2- What is Bipolar Disorder, Exactly?

2009-12-31T03:52:00.000-08:00

I am going to quote from this website http://www.nimh.nih.gov/health/publications/bipolar-disorder/complete-index.shtml

Then I am going to quote a wonderful description from a person who actually lives with it. She is on one of the online support groups I frequent and her description is one of the best I have ever read. It's one thing to read the clinical definitions, it's a different thing to see how it affects someone in real life.

What is bipolar disorder?

Bipolar disorder, also known as manic-depressive illness, is a brain disorder that causes unusual shifts in mood, energy, activity levels, and the ability to carry out day-to-day tasks. Symptoms of bipolar disorder are severe. They are different from the normal ups and downs that everyone goes through from time to time. Bipolar disorder symptoms can result in damaged relationships, poor job or school performance, and even suicide. But bipolar disorder can be treated, and people with this illness can lead full and productive lives.
Bipolar disorder often develops in a person's late teens or early adult years. At least half of all cases start before age 25.¹ Some people have their first symptoms during childhood, while others may develop symptoms late in life.
Bipolar disorder is not easy to spot when it starts. The symptoms may seem like separate problems, not recognized as parts of a larger problem. Some people suffer for years before they are properly diagnosed and treated. Like diabetes or heart disease, bipolar disorder is a long-term illness that must be carefully managed throughout a person's life.

What are the symptoms of bipolar disorder?

People with bipolar disorder experience unusually intense emotional states that occur in distinct periods called "mood episodes." An overly joyful or overexcited state is called a manic episode, and an extremely sad or hopeless state is called a depressive episode. Sometimes, a mood episode includes symptoms of both mania and depression. This is called a mixed state. People with bipolar disorder also may be explosive and irritable during a mood episode.
Extreme changes in energy, activity, sleep, and behavior go along with these changes in mood. It is possible for someone with bipolar disorder to experience a long-lasting period of unstable moods rather than discrete episodes of depression or mania.
A person may be having an episode of bipolar disorder if he or she has a number of manic or depressive symptoms for most of the day, nearly every day, for at least one or two weeks. Sometimes symptoms are so severe that the person cannot function normally at work, school, or home.
Symptoms of bipolar disorder are described below.

Symptoms of mania or a manic episode include:	Symptoms of depression or a depressive episode include:
Mood Changes A long period of feeling "high," or an overly happy or outgoing mood Extremely irritable mood, agitation, feeling "jumpy" or "wired." Behavioral Changes Talking very fast, jumping from one idea to another, having racing thoughts Being easily distracted Increasing goal-directed activities, such as taking on new projects Being restless Sleeping little Having an unrealistic belief in one's abilities Behaving impulsively and taking part in a lot of pleasurable, high-risk behaviors, such as spending sprees, impulsive sex, and impulsive business investments.	Mood Changes A long period of feeling worried or empty Loss of interest in activities once enjoyed, including sex. Behavioral Changes Feeling tired or "slowed down" Having problems concentrating, remembering, and making decisions Being restless or irritable Changing eating, sleeping, or other habits Thinking of death or suicide, or attempting suicide.

Symptoms of mania or a manic episode include:

Symptoms of depression or a depressive episode include:

Mood Changes

A long period of feeling "high," or an overly happy or outgoing mood
Extremely irritable mood, agitation, feeling "jumpy" or "wired."

Behavioral Changes

Talking very fast, jumping from one idea to another, having racing thoughts
Being easily distracted
Increasing goal-directed activities, such as taking on new projects
Being restless
Sleeping little
Having an unrealistic belief in one's abilities
Behaving impulsively and taking part in a lot of pleasurable,
high-risk behaviors, such as spending sprees, impulsive sex, and impulsive business investments.

Mood Changes

A long period of feeling worried or empty
Loss of interest in activities once enjoyed, including sex.

Behavioral Changes

Feeling tired or "slowed down"
Having problems concentrating, remembering, and making decisions
Being restless or irritable
Changing eating, sleeping, or other habits
Thinking of death or suicide, or attempting suicide.

Ok, that's the dry, boring medical explanation. Here's the nitty-gritty. Kathryn gave me permission to use her name and quote her and for that, I am very grateful. First hand accounts do way more for my understanding of the disorder than anything else.

THE DIFFERENT SIDES TO ME! DO YOU REALLY KNOW ME? DO YOU WANT TO?

by Kathryn Parker-Barnes.

Ok I thought I would write this to sort of explain my Bipolar and to help the people around me to recognise when I am in the different phases. I have realised that so many people have no idea who I am or should I say they cant differentiate between the illness sides of me and what is just me!
So I thought I would try and categorize the different phases and the behaviour I have during those phases so that those close to me can perhaps recognize when I am becoming unwell because unfortunately the nature of the illness means that I don’t always know when I am getting unwell as I am often oblivious to what is happening and cant see that I am Ill.

My Manic Side (This is to me my fun time) but its not really fun as it will always be followed by depressive phases and can at times become Mania which is very dangerous. When I'm manic you really need to try all you can to talk to me and get me to recognise what I'm doing and seek help from my psychiatrist if it starts to become a problem.

I will become a pleasure seeker! I'm looking for the buzz, the high in everything.
I will start to drink more than usual
I will want to party a hell of a lot and when I cant party I will get frustrated!
I will seek out sexual partners more than usual
I will want sex and not care who its with
I will jump from one sexual partner to another very quickly and not really care.
I will be tempted and sometimes give in to that temptation with illegal drugs such as cannabis and cocaine
I will probably smoke a lot more than usual
I will have lots of ideas for new things
I will become erratic
I will change my mind on things a lot
I can be forgetful cos my mind is too busy
I will take on lots of new projects and things to do
I will become very talkative a lot more than usual
I will become quite loud and overwhelming in conversations often butting in on conversations etc
I will get annoying! I will poke people and tickle people at inappropriate moments
I will mimic moods in groups so if its a happy group I will become Super happy! I get very over the top!
I will talk very quickly
I can be attention seeking!
I get twitchy! Tapping my fingers or my feet
I will not sleep very well, Ill start to stay up later and later and I wont sleep in the next day to ensure I have my 8 hours minimum.
I wont read very much at all
My studies can suffer as I cant focus enough.
I will distance myself from and avoid people who try to tell me Im behaving badly or wrongly
I will act like I don’t have an illness
I will go on spending sprees I will be buying all sorts of things for myself, gifts for family etc
My driving gets crazy!I will drive like a loon!!
I find myself being over friendly to people! Ill say Hi to anyone in the street when Im highly manic!
I get confused easily
I forget simple things
I can become hyper focused on one thing to the extent of ignoring other things around me.
I will zone out in conversations at times so I will appear to not be listening as Ive been distracted.

My mixed state Side (This is the Dangerous time) doesn’t happen all the time but if it does it usually happens at a peak manic time just before I crash into a depressive phase, its when you need to call the crisis team or my psychiatrist as I will not be in the frame of mind to do it myself!

I will become very very aggressive and argumentative
I will be highly irritable, nothing you say or do will be right!
I will be extremely paranoid and suspicious of people
I will want to smash things up and may act on this
I will become very abnormally emotional crying at things and getting angry about it
I will be volatile and also violent sometimes
I will become very obnoxious
I will be very nasty to people and act like I don’t care
I will be quite threatening at times
I will make you hate me!
I can be suicidal at this point if I am pushed I can act on it.

My Depressive Side (This is my horrible time) This is when I need people to care the most and to keep on caring yet I will do everything to push you away! I know its hard and its a thankless task at the time but believe me I will thank you when I come out of it.

I will be quieter than usual
I will act like I don’t care (but I do)
I will withdraw from social activities
I will withdraw from people
I wont phone people or try to make contact
I will sleep a lot
I will read a hell of a lot more than usual
I will watch mind numbing TV
My speech will be slower
My thoughts will be despairing and miserable
I will put myself down a lot
I will cry a lot
I will think no one cares
I will push people away from me
I will talk about depressing things a lot
I wont want to go out and have fun
I will become very self absorbed and selfish
When I go very very quiet for a long time and Ive closed off that's when you need to worry
I will think about killing myself and may even write suicide letters
I will get upset at things easily
I will think everyone hates me
I will think all that I do is cause people misery and grief
I will think that the people in my life are better off without me
I will think I am worthless, ugly, shit, useless, pathetic, not good enough or worth people caring about.
I find making any decisions really hard to do
My intelligence seems to drop I feel “thick”
I stop caring about how I look
I stop caring about the housework totally
I get anxious and nervous about talking to anyone
I get “ill” a lot headaches, migraines, stomach trouble, flu etc
I cancel appointments a lot to avoid seeing people

My gratitude to the great Facebook support groups:

Bipolar Disorder Support group

Bipolar Awareness ~ Stop the Stigma

23) Why are they Tapping On My Daughter?

2009-12-30T09:24:00.000-08:00

When E was inpatient, we visited her one night and she told us that they had been 'tapping her'.
Intrigued I asked around to find out what this could have been.

Turns out it was what is called EMDR. EMDR stands for 'eye movement desensitization and reprocessing'. It is used in the treatment of post traumatic stress. The treatment is a little controversial, but E's counselor at the hospital swore by it and said the FBI uses it for their field agents.

I did some reading and the conclusion is that it cannot hurt in any way and may actually help, even if it is just a placebo effect.

Here's a quote from this website http://www.emdr.com/ about how it is done:

"During treatment various procedures and protocols are used to address the entire clinical picture. One of the procedural elements is "dual stimulation" using either bilateral eye movements, tones or taps. During the reprocessing phases the client attends momentarily to past memories, present triggers, or anticipated future experiences while simultaneously focusing on a set of external stimulus. During that time, clients generally experience the emergence of insight, changes in memories, or new associations. The clinician assists the client to focus on appropriate material before initiation of each subsequent set."

Research is starting to be done in this area and it seems that EMDR can help.
This great article in Scientific American outlines the pros and cons: http://www.scientificamerican.com/article.cfm?id=emdr-taking-a-closer-look

Their conclusions are the following:

Does EMDR work better than supportive listening?
Probably. Although the research evidence on this front is less extensive, most studies indicate that EMDR produces more improvement than control conditions in which therapists merely listen attentively to a client’s problems but do not attempt to intervene directly. (Studies generally show, however, that such supportive listening conditions produce positive effects in their own right.) So the therapeutic effects of EMDR probably cannot be attributed entirely to the beneficial consequences of interacting with a warm and empathetic therapist. Something more seems to be going on.

Does EMDR work better than standard behavior and cognitive-behavior therapies?
No. Most behavior and cognitive-behavior therapies for anxiety rely on a core principle of change: exposure. That is, these treatments work by exposing clients repeatedly to anxiety-provoking stimuli, either in their imagination (“imaginal exposure”) or in real life (“in vivo exposure”). When exposure to either type is sufficiently prolonged, clients’ anxiety dissipates within and across sessions, generating improvement.

and the final paragraph sums everything up nicely-

So, now to the bottom line: EMDR ameliorates symptoms of traumatic anxiety better than doing nothing and probably better than talking to a supportive listener. Yet not a shred of good evidence exists that EMDR is superior to exposure-based treatments that behavior and cognitive-behavior therapists have been administering routinely for decades. Paraphrasing British writer and critic Samuel Johnson, Harvard University psychologist Richard McNally nicely summed up the case for EMDR: “What is effective in EMDR is not new, and what is new is not effective.”

22) Ketogenic Diet Basics

2009-12-30T09:16:00.000-08:00

I took a nutrition class for my nursing school pre-requisites (I want to be a psych nurse- now there's a surprise). We had to write a paper on one nutrition based subject. Obviously I chose the keto diet.

For most people ketosis -- ketone bodies in the blood or urine -- is due to inadequate fat metabolism, and is an undesirable body state indicating a dietary deficiency. However, for a small population-young children with intractable seizures -- refractory epilepsy -- purposely inducing a state of constant ketosis via a special diet can lead to improved or complete seizure control.

Refractory epilepsy means that the patient has failed to respond to two or more anti-convulsant drugs. Usually, when this occurs, other drugs also prove ineffective. Therefore, doctors consider more drastic seizure-control options such as brain surgery, the vagus nerve stimulator, or combinations of drugs with hard-to-manage side-effects. For many, the ketogenic diet is an effective alternative. Though the ketogenic diet also has difficulties and may also have negative side-effects, these often compare favorably with those of alternative treatments and is at least as likely to be effective.

Researchers have long known that a fasting state suppresses seizures in many epileptics. Since fasting cannot be sustained, a ketogenic diet is used to mimic the effects of starvation while at the same time providing enough energy to sustain life. A normal diet includes an adequate supply of the three energy-yielding nutrients: fats, carbohydrates and proteins in amounts that are balanced. In a fasting or starvation state, an inadequate supply of carbohydrate deprives the brain of sufficient glucose for its metabolic needs, and the body compensates by burning its fat stores. This produces ketone bodies in the bloodstream from the body's own glycogen, which provides energy for the cells of the brain. The body is said to go into ketosis, and its acid-base balance is disturbed. An ultra-high fat diet -- the ketogenic diet -- maintains this state without using up the body's stores of fat and muscle by providing a 3:1 or 4:1 ratio of fats to combined carbohydrates and protein. With this diet, the suppression of seizures may be maintained indefinitely.

A typical day’s worth of food has to be carefully calculated and weighed, and the measurements must be extremely precise. A menu would be dominated by extremely high fat foods such as eggs, butter, heavy whipping cream, mayonnaise, or bacon. It would include few fruits and vegetables and certainly very few sugars. It becomes a challenge to find foods to maintain this ratio and have the diet remain palatable, which is the main reason the diet tends to be used most often with very young children, as their food preferences are not yet set and it is easier to control their food intake. (Adults have a tendency to cheat on the diet, and any deviations can result in loss of ketosis and, therefore, seizure control.) Also, young children are better able to tolerate years on a high-fat diet without developing cardiovascular problems.

The ketogenic diet has success rates at least as good as anti-convulsant drugs and often works when the latter do not. In a 1998 cohort study done at Johns Hopkins a group of 150 children was followed for 12 months. Of the 150 children, 25 dropped out of the study, 26% had a 50-90% reduction in seizures, 31% had a 90-99% reduction in seizures and 3% became completely seizure-free.

A ketogenic diet is usually administered for two years at the end of which most patients can be weaned back to a more balanced diet without an increase in symptoms. The precise mechanism by which a state of ketosis helps with seizure control is not known, nor is the reason that benefits typically persist even after the diet is eventually discontinued. Perhaps parts of the brain are able to heal themselves during an expended period of significantly reduced seizures; perhaps the high fat content of the diet strengthens the neurons' myelin shields over time.

Despite its success rate, the ketogenic diet is not without side-effects and drawbacks. It is deficient in many nutrients including vitamin D, thiamine, vitamin B6, folate, calcium, magnesium, selenium, zinc, iron and fiber and so needs to be heavily supplemented. It takes a great deal of creativity to make such an extreme diet appealing, though a registered dietician can help, as can discussions with other parents as to what worked for them. The diet can be difficult to administer and requires extensive parental education. It is time-consuming to calculate, weigh and measure foods, though it soon becomes habit to do so and may become no more difficult than remembering to administer doses of medicines throughout the day.

Side-effects of ketosis can include nausea, fatigue, constipation, bad breath, kidney stones, and increased cholesterol. However, epilepsy drugs have their own serious side-effects, and the side-effects of frequent seizures are considerably worse -- brain damage, developmental delays, serious injuries, and disruption of learning.

A Case Study

E is a seventeen-year-old female. She had refractory infantile spasms beginning at age four months. Infantile spasms is one of the worst childhood epilepsies usually resulting in life-long seizures, mental retardation and physical handicaps. Infantile spasms are notoriously difficult to control with anti-convulsants. She had the typical chaotic EEG pattern known as hypsarrythmia, had 50 seizures a day. She did not respond to ACTH, which temporarily left her with an extreme Cushingoid appearnace and lowered immunity. The second anti-convulsant she tried, Tegretol, began to lose its effectiveness after six months.

E was started on a 4:1 ratio classical ketogenic diet at the age of 18 months. She was seizure and drug-free within 6 weeks and her EEG normalized. She caught up developmentally during this time due to the cessation of her seizures. She was weaned from the diet after two years. At 17, she remains substantially seizure-free and is developmentally and physically normal.

A less extreme form of the ketogenic diet -- the modified Atkin's diet, has also proven effective. The Atkin's diet became very popular in the 1990s, but was disavowed as being extremely unhealthy for the general population. However, for the small population of children with difficult-to-control epilepsy, such a diet can be very effective. A parent dealing with their child’s intractable seizures should consider this option in consultation with a neurologist and registered dietitian. For some children it can be nothing short of a miraculous cure.

21) What Does Katrina Have To Do With It?

2009-12-29T17:23:00.001-08:00

Katrina destroyed our lives in 2005. Each of us went through mourning and post-traumatic stress syndrome. I am sure it contributed a lot to E's bipolar.

This was written , then. I don't think *I* was anywhere near normal for about two years after the hurricane.

RETURNING

The closer the return to New Orleans came, the more unsettled I became.

Bad as it was beforehand, I was not prepared to see what I saw and I was an absolute basketcase afterwards. I thought I could handle it, but it was a huge shock.

The destruction started 100 miles from New Orleans where you could see trees snapped in half and uprooted.

We came into town through Metairie (a suburb and neighboring parish- they were allowed to return much earlier than us and most of the people here with us in Memphis were from Metairie and it was hard watching them being able to go back where we were not allowed to).

I wanted to go to Torah Academy and get my 14 years of teaching materials that I have accumulated. Metairie looked awful. Trees down everywhere, buildings destroyed. School was a shock. It was now the headquarters for the SBA disaster recovery team. All the painting we had done was ruined, the library I took 10 months to organize was dismantled. The school sustained water damage, but repair had started. The yard in the back looked pretty bad and Mr. A's tree house that he made for pre-k was ruined. The fences were down, the bushes were gone.

All the new toys were thrown out. It was very sad.

Metairie is bouncing back a lot faster than New Orleans, but it was still so sad to see the destruction. But at least things were open there and there were regular citizens living there and traffic lights works etc

We then drove down Esplanade to Lakeview (where the levee broke and one of the worst hit sections of the city- we used to live there many years ago).

Lakeview used to be one of the most beautiful areas of the city. The scene there was indescribable. It was twighlight when we got there which added to the eerie feeling.

It was completely deserted and dark. The waterlines were visible on every house. There were piles of garbage where the entire contents of peoples houses were just ruined. There were no traffic light, no streetlights. The whole city smelled like a crypt (Metairie did not smell). The grass outside every home was dead. The cars were all covered in a layer of filth. It looked like a war happened, like the movie after the aliens came, like a bomb dropped.

We decided to go see Beth Israel. I stood outside the synagogue and raised my arms and that is where the waterline was. I am almost 6 feet tall. Some places in Lakeview, the water was higher.

We went two feet inside and decided that it was too dangerous to go further. It was heartbreaking. The walls were still wet, there was mud everywhere. Everything was destroyed.

After Beth Israel we drove further through Lakeview with me weeping. We went down Canal Blvd. to Uptown, our neighborhood.

Uptown was dark and quiet. There were hardly any cars. The only people we saw in New Orleans were the army, disaster recovery people and construction workers. Hardly anyone is really living there and there are no children which is creepy. It was hard to find our way around. Streets we have driven for 15 years looked completely different. An entire block of Carrollton avenue was burned down (BTW, the night before we left, I was reading the forums on NOLA.com and saw that there was a four home fire on Broadway- my heart skipped 10,000 beats).

Broadway looked pretty bad (although, ironically, up by the frat houses looked BETTER (-:).

There was a mark on our house to say that it had been searched. I am glad to say that no one from our building is dead.

We had electricity but no water. I smelled as bad as New Orleans after two days in my clothes. It became a challenge to find running water. At night we took our 15 year old daughter into a bar to use their restroom. It used to be filled with Tulane students, now it is filled with construction workers. In the morning I headed over to Tulane University and asked five big construction workers where I could use a bathroom. Tulane had no working bathrooms, but they were so nice and told me I could use their portapotty. HAHAHAHA- I dont think so!!!!

I never made it to the bathroom until we drove to Plaquemines parish later that day.

The bottom floor of our apartment building was ruined and none of our stuff was left expect for the tent which F had put up high. In our apartment (on the third floor) windows had been blown open, but our stuff was pretty much intact and we were able to pick though it and take a lot of important things. I got photos, the computer, the baby books, a few toys for the kids, E's journals from England, videos of the kids when they were little, passports , my vinyl record collection, my sheet music, E's drawings. F found some letters that I had written him when we first started dating and I was 18 and he was 29. T and I are going to read them later and get a good laugh. He probably got a good laugh himself at the time. No one should be held accountable for things they write at 18.

I also found some letters my parents had written me when I was in boarding school in Switzerland.

Those were the things that were important- the memories. Thank G-d we had stuff to take. We left so much stuff that we could not carry, could not fit in our new place. But stuff is just stuff. I regret leaving my piano. We just could not carry it- it took 4 guys to get it up three flights of stairs. I had that piano since I was a teenager and it saw me though my music major days in college. It was a present from Mom and Dad.

I feel terribly sorry for the people who lost everything- it must be devastating.

Our life was reduced to one U-haul truck.

In the morning we drove to Plaquemines Parish to get the contents of our safe deposit box (where they had been moved for safe keeping AFTER the hurricane- go figure). Our bank was right where the levee broke, but our stuff was dry- it was amazing. We were so lucky. F

and I are still married- our ketubah was in there. That was an interesting shaila to ask What do we do if we think our ketubah was flooded? (answer from Rabbi Greenblatt- Wait and see for sure, then if it is, Well write you another one and yes, you can be in the same house together). Please nobody write to me and tell me how important it is to actually have it WITH YOU- I know. [Little joke for Michelle Stross- maybe Frank and I could have gotten married AGAIN (-:]

Plaquemines parish had BATHROOMS. I love running water.

Driving to Plaquemines parish over the Crescent City Connection bridge was also eye-opening. You see from up high how many roofs are off. All are covered with blue tarps.

I do not take anything for granted anymore.

We decided to take one more tour of New Orleans before we left. We went back to Lakeview, to our old street. I still get tears in my eyes thinking about it. Lakeview is so devastated.

Stinky, tired and in shock, we headed back to Memphis. Last year I hated driving on the highway,. This year I am driving trucks on the highway. U-haul is doing a booming business, thats all I can say.

If I had any doubts about moving to Memphis or illusions about coming back, the trip got rid of them. There is not much to go back to. Recovery will be a long time. I do not have the heart to be a part of it. Funny that we lived there 16 years and are not going back and people I know who lived there three weeks are coming back. Maybe they are hardier than I. I grieve for New Orleans. It will be many years before things are normal again. I felt like the joy had been sucked out of my life when I saw the city.

Memphis felt like coming home. T's friend had organized that four high school boys meet us at our house and unpack the truck- what a blessing. It took them 15 minutes to do what would have taken us 3 hours. I got to take a bath while they helped- whew!!

Do you know how wonderful it is to have your OWN HOME!! Small though it is, it is OURS.

We took a long time to get a home.

So the house is small, but two sets of bunk beds really help and we are really into simplifying and not accumulating too much stuff. As Frank said about our old home What the heck did we have that was taking up so much space anyway?

Material things we have lost mean little. I mourn our old life, the fact that our friends are scattered everywhere (when my New Orleans friends call me these days I do not say How are you? I say WHERE are you?). I miss a feeling of security and safety, I miss our little community and Simchas Torah by Chabad (sigh- no one does hakafot like you guys. Watching them take out the Torah scrolls from Baron Hirsch Shul brought a lump to my throat thinking of ruined New Orleans Torahs. Watching Kol Hanearim was also sad because very few of those children were our Nearim. I miss my kids. The ones I taught for many years).

The New Orleans Jewish community came together for Rosh Hashana in Monroe, Lousisana. I will be posting a bunch of hurricane links at the end of this. There are two wonderful stories about the reunion. I am quoted in one as the elementary school teacher who misses her students.

May we only celebrate together from now on.

So, F finally got a job. He is working for Fed-Ex. The kids think this is hysterically funny. When we were bored in the car, we used to count Fed-Ex trucks. We were going to have Fed-Ex party when we got to 100 and we never got around to it. Now were going to have to have a HUGE party. The kids were sort of disappointed that Daddy was not driving a truck. Nothing so interesting, he programs the computers.

Memphis is a wonderful city.

I have a story that sums up how wonderful the Memphis Jewish community is:

One Shabbos E, S and I were walking to shul and we got caught in a thunderstorm (do not ask how bad it was for a poor 5 year old who is already scared of storms to get caught in a thunderstorm and do not ask how stupid her mother was not to abandon the metal stroller earlier).

Anyway, we were too far from home to turn around and still far from shul. When we got there, we were soaked through tot the skin. Not even 45 minutes after Shabbos, someone dropped off a raincoat at my house. That is what they have been like the whole time we have been here.

My photoshow http://www.rockyou.com/show_my_gallery2.php?instanceid=33107289

20) Shooting Squirrels

2009-12-29T15:30:00.000-08:00

This illness does have its funny side. E is, um, interesting when she's manic. I remember being in the grocery store with her one day and she would take a food off the shelf and use it to make a long string of rhymes. By the end of the trip, I was laughing really hard, but feeling like I shouldn't have been.

It is also hard to imagine her dancing around her room and singing for hours. She's so quiet, usually.

I can also tell just how manic she is by where she wants to go to college. If she wants to go to school in Alaska, she's manic. If she wants to go to the University of Memphis, we're fine. If she wants to go live in Iceland, we've got real problems.

Maybe it was wrong to laugh when her counselor called me up after an IOP (intensive outpatient) group therapy session. She had asked the kids what they did for anger management. E replied "I take my pellet gun and I shoot squirrels!" Even the counselor had a hard time not cracking up because it was so out of character for her.

The pressured speech can be interesting,too. I had a 'conversation' with E that went like this:
"Wow, those brownies smell good. You know what else smells good? Roses, they smell good. The roses in our garden are dead. I know a boy who did that for science fair. Every year he made a tornado in a bottle. That wasn't really science. The roses are dead."

I'd wish I could have read the 200 page novel she wrote in one night- but she erased that.

I asked her if her solution to everything happened to equal 42, but she hadn't read enough Douglas Adams to know what I meant.

So, I laugh... it's better than the alternative.

19) Pet Therapy

2009-12-29T07:11:00.000-08:00

There is much evidence to suggest that pets can help with depression and bipolar. E has a bunny and a dog. She hugs the bunny when she is feeling bad. Taking care of the dog focuses her outside her own needs.

Our bunny Julian and our silly dog Neela may actually have helped save her life at a time when she was really depressed. Unconditional love and having a friend when you are lonely go a long, long way. Sometimes talking to Neela is easier than talking to a human being. Holding Julian when you want to cut helps a lot. It is a wonderful feeling to know that we rescued an older dog who needed love and gives it back in spades.

Here is another story of pets helping bipolar
http://bipolar.about.com/od/copingresources/a/joy_catsrescue1.htm

There are even bipolar service dogs
http://bipolar.about.com/od/disability/a/servicedogs.htm

18) Here Comes the Sun/Acceptance

2009-12-28T14:03:00.000-08:00

Little darling, the smiles returning to the faces
Little darling, it seems like years since it's been here
Here comes the sun, here comes the sun
and I say it's all right

The Beatles were right. The sun returns smiles to faces. We've been in Florida for a week. Everyday we've all been exposed to natural sunlight for way more than a half hour a day. E is doing great. This was natural light box therapy. I actually packed the light box, but didn't need it. She has a low level of depression, but I think that's going to be there, no matter what.

http://bipolar.about.com/od/treatment/a/lightbox.htm

I had an epiphany recently. Two epiphanies, actually. The first was that there ISN'T a magic cure like there was when she was a baby. In some form or other, this illness is going to be a part of our lives. The other was that I have been thinking about all this from MY perspective. About how hard it is to deal with a family member with this illness, how it impacts the family and I think I never really thought about what it's like to be the one WITH the illness. How difficult it must be to live with this on a day-to-day basis. My girlie has to struggle, she has to make more effort to do things that other people take for granted. I think she's brave and wonderful. I think about what she's achieved the last year, despite being in the hospital four times. Despite not wanting to get out of bed many times, despite being manic, despite all the side-effects of all those drugs,despite the fact that she has so much more to deal with than most kids her age: She going to graduate on time. She will get into the University of Memphis-with a scholarship. I am enjoying glimpsing what she CAN accomplish. I think things are only going to get better.

17) A Major Manic Episode

2009-12-24T15:11:00.001-08:00

It rained for weeks. Everyone was getting depressed, let alone a person with bipolar disorder who is susceptible to depression, anyway. We decided to put a very depressed E on an SNRI called Effexor. We were desperate. She was cutting, something she hadn't done for a long time, she could barely get out of bed, she wasn't eating. I had second thoughts about Effexor from the start. It was a gamble, she'd either be fine and not depressed or she'd become manic. Effexor was so close to Zoloft, it was risky. Anti-depressants are not all that effective in bipolar disorder and are not used that much.

Nevertheless , we did it anyway. Within three weeks, she was very, very manic. She literally didn't sleep, she walked the neighborhood for nine hours one night, she was doing clang associations (which are funny, but just not right), she couldn't sit still, she talked a mile a minute, she wasn't making sense when she talked. She then cycled into mixed state depression, mania again. She was cycling so fast, we couldn't keep up.

One Friday I sent her to school extremely depressed. I saw her and hour later and she said "Hi, Mom, I'm manic." She got so manic that she thought she was 'fine' and didn't need meds. Without an anti-psychotic, things go downhill VERY fast. After two days of throwing her meds in the trash when we weren't looking, she was in trouble. She was heading full-steam for the hospital.

We started out in intensive out-patient but after a call from the out-patient therapist (who has a bipolar son) who said she was too manic for that program and she needed partial hospitalization,I took her to be admitted. It wasn't a pleasant scene. She was suspicious, thought she didn't need to be there, would not get into the car. She was so manic that she thought absolutely nothing was wrong with her.

I hate having to hospitalize her, but sometimes WE need a break and sometimes we cannot keep her safe. Sometimes she needs to see a psychiatrist every day. Sometimes she needs a little detour to get stable.

Two weeks later, she's doing great. She's not manic and she's not depressed. After a mania as bad as the one that put her in the hospital, the danger is for her to crash into a suicidal depression or worse, a suicidal mixed state. The doctor averted that. She's doing really well.

A MANIC POEM:
Hover up above
Scatter platter
matter
mother ate a dove
bounce a mouse
an orange house
lozenge purple elf
build a shelf
calf laugh
cow in the green
coyote moon
soon mean
full maggot grub
hover mother
skylie

That probably made perfect sense to her when she wrote it. She once wrote a 200 page novel in a night when she was manic. She read it later and erased it because it made no sense. Rhyming words because of the way they sound is called 'clang associating'. E is sure that T.S. Eliot wrote some of the poems in Cats in a manic state. Maybe we can sell her poetry?

16) And Turn Back Again in The Other Direction

2009-12-24T15:10:00.002-08:00

We are BACK to a dignosis of seizures. We saw them neurologist last week and she thinks that some of the activity is seizures. So now we have a funky mixture of seizures, weird migraines and bipolar disorder. In desperation, I called Johns Hopkins to see if we could get her on the Modified Atkins Diet, but since her seizures are considered 'controlled' they will not see her as a patient. They will, however, work with a nutritionist here. The fact that we want to try this to control bipolar disorder is a little controversial. At this point, we have nothing left to lose. After the tenth medication change and weaning off a drug that made E seriously manic (leaving the hosue and walking around the neighborhood for nine hours counts as 'serious') we have few options left. We have not tried lithium, that's probably next and when she's 18 she can ECT. It is a little scary to think abotu shock treatment in a child who already has seizures, but it's not as bad as it's potrayed in the media. We also do not have stability and last week I almost hospitalized her twice. Thursday night I wanted to scream at someone "HELP HER!"

On a positive note, I talked to Diane Pillar, who is one of the big names in ketogenic diet movement. I do not get excited by celebrities, only amazing doctors! I'd love to go to Hopkins and meet the people who made E's development possible.

And another positive note, E won an art competition for people with epilepsy...
http://expressionsofcourage.com/

15) Things Take a Very Interesting Turn

2009-12-24T15:10:00.001-08:00

After a stay in the EMU and the care of an excellent doctor, Dave Clarke of Le Bonheur, E's diagnosis was changed from temporal lobe epilepsy to basilar migraines. This was totally unexpected given her history of severe epilepsy. She has now had or has three serious brain-based illnesses. We may never know the exact cause, we may never know if they are tied together.

Basilar migraines have some seious neurological implications of their own. She is still not legally able to drive because she loses conciousness a lot. She is also in an altered state of conciousness sometimes and is frequently dizzy.

These migraines can lead to the occasional seizure and we know one incident that clearly was a seizure and one that may have been.

Some of the other symptoms:

The aura symptoms can include dizziness, double vision, loss of balance, confusion, slurred speech, hearing changes, temporary blindness and tingling on both sides of the body. During the attack, some people lose consciousness or pass out. The aura typically lasts less than one hour. Often these patients are mistakenly thought to be intoxicated, under the influence of drugs, or suffering from other conditions.

These things apparently come from the brainstem and are neurological rather than vascular. The headache is mild for E compared to other people who have classic migraines. The headaches are less worrisome for her than the other stuff.

She still wears a medic alert bracelet. She still has bipolar (my husband was sort of hoping she could have brain surgery that might help alleviate both- be careful what you wish for. I am ecstatic this is no longer a possibilty). She therefore has two conditions that could be mistaken for drunkeness/drug-use or even just plain willfulness. I do not want her to end up in jail by mistake.

Basilar migraines are easier to deal with than seizures, but they are not an easy condition to live with.

I am doing lots of research trying to understand the epilepsy/migraine connection. They are highly related.

14) Life Is Not All About Illness

2009-12-24T15:09:00.000-08:00

One thing that is very hard for me is finding a balance between having a serious medical condition and life continuing as normal. I tend to be a little obsessive when I am trying to answer questions. I have a problem in front of me and I want to solve it. It is very hard for me to accept that there might not be an easy solution, or perhaps ANY solution.

E is a teenager. She wants to do normal teenage activities. It's hard for me to let go. When her best friend is making plans for college, I wonder if E can ever go away. But she can't stay with me forever. She's seventeen years old. At some point I have to let her go and she has to manage her illness and her moods by herself. It might mean that she manages them many, many miles from me.

I am trying hard to not let this illness dominate out lives. It is so hard not to blame everything on bipolar or epilepsy. People can have bad days or get into bad moods. It doesn't mean that Eis having a bipolar episode or that hospitalization in imminent. People can get dizzy in extreme heat. That doesn't mean it was seizure activity.

It is tempting to mention people on TV that I know are bipolar and I do it too much ("Did you know Jim Carrey is bipolar, E?" or "Do you think Britney was having a manic episode when she shaved her head?"). It bothers E, but I am her mother and I worry.

13) A Seizure Diary

2009-12-24T15:08:00.002-08:00

Non-specific dates- things she remembers happening, but not when:

Collapsed and lost consciousness at archery. Could not let go of the bow. Arm stiff. Confused afterward

When playing Mah Jong: everything looked and sounded far away. Could hear voices, but they were distant. Everything looked white.

Lots of complaints of nausea and dizziness

While in lakeside, she filled out forms about how she felt. Complained of dizziness on every form. Starting new drugs at the time, however.

Dropping things a lot

Auditory hallucinations. Hearing music

Visual hallucinations. Seeing things out of the corner of her eye

5/13

Climbed stairs. Extremely dizzy. Had to sit down.

5/20

Heard bells

Hand shaking uncontrollably

MOOD: flip from depression to hypomania

5/23

Sitting. Aware of ‘blacking out’ People trying to talk to her and she was not responding.
Very upset and crying afterward.

MOOD: seems to be flipping rapidly.

5/25

Dizziness

MOOD: depressed

5/26

Holding something. Couldn’t keep hold of it. Dropped object.

MOOD: hypomanic. (talking of moving to Alaska, appearing slightly ‘drunk’ giggly)

SKIPPED A DOSE OF ALL MEDS FOR THE FIRST TIME EVER

5/27

3 separate incidences of dropping things

MOOD: manic

We had accidentally been giving her an ‘overdose’ of Tegretol for a week. She had been getting 200mg more than was prescribed. She was at 800mg a day when she should have been on 600mg.

She was writing a story about a pyromaniac and lit ten matches and does not remember doing so.

5/28

OVERHAUL OF DOSAGES OF ALL MEDS

TEGRETOL: (400mg 200am 200 pm)

WELLBUTRIN: 150mg cut from 300mg (am)

ABILIFY: 10mg (stayed the same- told we could go up of she seemed manic or psychotic)

5/29

Everything felt ‘not real’, nausea, felt like she would have fallen down if she had not been sitting. Headache afterward

5/30

Feeling not real, nausea. Headache

MOOD: happy, but does not seem manic

5/31

Good mood all day. Nothing suspicious.

MOOD: in the evening flipped very suddenly to depression. Crying (she hardly ever cries)

6/1

MOOD: good, not manic

6/2

Dropped pen ‘unable to hold it’. Happened twice

She complains of memory problems in general. Not specifically related to any one incident.

6/3

Spaced out. Noticeable to other people. Talking to her and not responding. Aware she ‘lost a little time”.

Mentioned she sometimes feels a feeling of fear that there is someone bad behind her.

6/5

MOOD: manic, thoughts racing

6/6

Bad smell that wasn’t there (feces)

Someone talked to her and she didn’t answer

She was on a scooter (hyperventilating?) when she suddenly dissociated, she ‘whited out’, dizzy, confused afterward. Headache afterward.

MOOD: irritable, mixed state

6/7

Bad headache in general

6/8

Dizzy and ‘rising nausea’ Felt anxious for no reason.

Almost immediately afterward she spaced out and everything went blurry. This one went on for a long time. The phone was ringing but she felt she couldn’t move to answer it. Headache afterward.

MOOD: sad

6/9

Smelled brownies that were not there.

6/11

30 minutes before scheduled EEG-spaced out, blacked out, not able to see anything. Headache after

PM- staring straight ahead, not responding. Confused afterward

MED CHANGE: TRILEPTAL

300mg am and 300mg pm. Other meds stay the same. Replaces Tegretol.

6/14

nausea, disoriented.

MOOD: ‘weepy’

6/15

Feeling ‘everything not real’ (no headache or confusion following)

MOOD: weepy

6/16

Everything not real. Felt like she was watching herself.

MOOD: happy

Almost dropped something. Hand loosened

6/17

Visual hallucination. Saw old woman out of the corner of her eye. Confused afterward

2 incidences of dropping things

MOOD: really bad

6/19

nausea, hand shaking

MOOD: better

6/20

Spaced out, not responding
nausea

6/21

Feeling everything not real

MOOD: really bad, angry, irritable

6/22

Major depression

6/24

Nausea, anxious for no reason. Crying afterward

6/24

MISSED PM DOSE of all meds

6/25

Talking to someone on phone and not understanding simple question. Had to be repeated 3 times.

Felt like she couldn’t move, but was conscious.

6/26

Anxious and dizzy all of a sudden

Felt like she was in a dream

6/27

am- felt really dizzy. Fell forward, blacked out, hand shaking when she came to. Confused and headache.

pm- blurry vision. Confused, headache. Could hear but not respond
(PMS??)

6/29

Unresponsive, staring, wouldn’t answer me. Confused afterward.

12) Life What Is It but A Dream- Temporal Lobe Epiilepsy and Creativity

2009-12-24T15:08:00.001-08:00

"I wonder if I've been changed in the night? Let me think. Was I the same when I got up this morning? I almost think I can remember feeling a little different. But if I'm not the same, the next question is 'Who in the world am I?"

"If I had a world of my own, everything would be nonsense. Nothing would be what it is, because everything would be what it isn't."

"This was not an encouraging opening for a conversation. I -- I hardly know, sir, just at present -- at least I know who I was when I got up this morning, but I think I must have been changed several times since then."

"I can't explain myself, I'm afraid, Sir, because I'm not myself you see."

All of the above are quotes from Lewis Carroll's book Alice's Advertures in Wonderland.

It is widely accepted that Lewis Carroll had temporal lobe epilepsy and many passages in Alice describe his seizure experiences. Alice seems to grow and shrink,a classic description of atemporal lobe seizure experience.

One very interesting symptom of temporal lobe epilepsy is hypergraphia-excessive writing or drawing. Depending on which temporal lobe is affected, the person will produce huge amounts of detailed writing ( left temporal lobe affected) or drawing (right temporal lobe affected). Couple this with extreme talent and some amazing works of art and literature have been produced by people suspected of having temporal lobe epilepsy.

The list includes:

Lewis Carroll
Socrates
Charles Dickens
Fyodor Dostoevsky (who describes seizures in many places in his writings)
Agatha Christie
Leonardo DaVinci
Beethoven
Tschaikovsky

Interestingly enough, hypergraphia is also associated with bipolar disorder and some historical and literary figures end up on both lists of people suspected of epilepsy and lists of people suspected of having bipolar disorder.

E both writes non-stop and draws. Maybe she'll make a masterpiece one day.

11) Big Shot Epileptologist

2009-12-24T15:07:00.002-08:00

We now began a waiting game. Memphis has an excellent comprehensive pediatric epilepsy center- Le Bonheur Children's Medical Center. E would be seen by a team of neurologist, medication specialist and, most importantly, a well-respect epileptologist. Unfortunately,we couldn't get an appointment until August of 2009. In the meantime, she had a repeat EEG at Le Bonheur. This time it was read by the epileptologist who saw some focal slowing and he became interested in Es case because of the attendant psychiatric symptoms. He is pushing for an earlier date for her to be admitted to the epilepsy monitoring unit.

Meanwhile we are dealing with many issues.

Tegretol was changed to Trileptal because there was incomplete seizure control and too much Tegretol sent E into a mania again. There was a scary incident when she was writing a story about a pyromaniac and she lit ten matches without knowing it, either in a manic state or in a seizure state.

E wants to drive. She cannot do this unless she has been seizure-free for 6 months. This is the law in Tennessee. This is very hard for her.

We still do not have seizure control and the seizures are still frequent. I am worried about them generalizing.

We face a possibility of surgery again. We're not sure if this is even possible because the abnormalities are on both sides of her brain. It is impossible to remove BOTH temporal lobes.

We are seriously considering the Atkins for seizures diet, since the ketogenic diet worked so well before. this is a HUGE commitment for a 17 year old girl. E is already so thin that she cannot afford to lose weight. This would all have to be done with a good dietitian. We keep kosher strictly, we'd have to figure out many obstacles. But E is willing to try this.

The neurologist described a patient she had had ten years ago who had had temporal lobe epilepsy and had her temporal lobe removed. it changed her personality. This is a possibility that frightens me. What if they do surgery and she's not E any more?

E has to wear a medic alert bracelet because there is the frightening possibility that she will do something in public that will be misinterpreted. Many people with temporal lobe epilepsy have been arrested for behavior they have no control over.

10) A New Doctor Who Listens

2009-12-24T15:07:00.001-08:00

One of the things that happened in L Hospital was that we finally got a decent psychiatrist who did not ignore E's medical history and did not blow-off our concerns about epilepsy.

He ordered an MRI and an EEG. The MRI was done outside of L, but the EEG was done in the psychaitric hospital and read by a psychiatrist, not a neurologist. The MRI showed some abnormalities-bilateral hippocampal atrophy. But the EEG was pronounced 'normal.'

Because of the MRI findings, L hospital made an appointment for her with a pediatric neurologist. Unfortunately we'd have to wait until April for that appointment.

We concentrated on learning all we could about bipolar disorder, even discovering that there may be a connection between it and epilepsy. Even finding a controversial theory that bipolar disorder may be a form of epilepsy. We continued to read about temporal lobe epilepsy, but that was more in the back of our minds since the EEG had been 'normal.'

The hospital provided us with family therapy and E with individual and group therapy and it was all very, very helpful. The hospital sent a representative to E's small girls' school (30 girls) to explain what bipolar disorder was and how the behaviors they had seen E display were caused by the storm that was going on in her brain.

It was E's very last day in IOP at Lakeside hospital when we saw the neurologist. The neurologist conformed that by the MRI alone we could assume that E was having seizures. We had described an incident when E was at her archery practice. E had been shooting her bow when she suddenly collapsed. Luckily for us, there were two big, strong guys next to her who had been giving her a lesson. I was able to yell "Catch her!" and they managed to stop her from hitting the concrete floor. We didn't really think much of it at the time. It had been very hot in the range and she was hungry. But one thing stood out in my mind: E had been unable to let go of the bow. Her arm remained stiff and she was very confused afterward. The neurologist told us that in a fainting spell, ALL muscles weaken. The fact that she had been unable to let go of the bow confirmed a seizure.

We were vindicated finally. We had been right, there was seizure activity going on. Luckily for us, one of the class of medications used for bipolar disorder is anti-convulsants. The Lakeside psychiatrist had already put her on Tegretol and the neurologist did not see fit to change it at this time. E was on a cocktail of drugs: Tegretol for seizures and mood-stabilization, Wellbutrin for depression, Abilify for psychosis and Cogentin to off-set the possibility she would develop a movement disorder called Tardive Diskensia, a common side- effect of anti-psychotics.

The dosages of these medications would be changed many times to try and get a good balance.

We began to record E's possible seizure activity and how her moods correlated. We noticed and interesting pattern: even with an anti-convulsant, she seemed to still be having lots of seizures and more interestingly, they seemed to flip her mood. E had been diagnosed officially with bipolar 1, rapid cycling. She had NO periods of normal moods. It seemed that the seizure might be more frequent than we had imagined. We did lots of reading about temporal lobe epilepsy and all the different ways seizures could manifest.

E's manifested like this:

1) Auditory hallucinations (hearing bells and music that wasn't there)
2) Visual hallucinations (seeing an old woman that wasn't there)
3) Olfactory hallucinations (smelling feces and brownies)
4) Dropping things
5) One part of her body shaking uncontrollably
6) ''Whiting out' vision going blurry, being aware that people were talking to her, but not being able to answer
7) Rising nausea (yes, that CAN be a seizure)
8) Feeling like everything is 'not real'
9) Feeling like someone was behind her and feeling a sense of dread
10) Dizziness
11) Staring straight ahead and not responding to people
12) feeling like she was 'watching herself' from outside her body

Many times after a seizure, she would become confused and have a headache.

Things were becoming more clear. Her rapid cycling was certainly due to seizure activity. What if she didn't actually have bipolar AT ALL? What if everything was seizure activity? The part of her brain that was being affected was the part that regulated emotions. The same part of the brain that produces infantile spasms. This was not a coincidence. Something more than simple bipolar disorder was at work.

9) The Psych Ward

2009-12-24T15:06:00.000-08:00

I wrote this when E was half-way through what turned out to be 14 weeks spent at a psychiatric hospital in one form or another.

By the time of her full-blown mania, things had gotten to the point where her therapist didn't think she could be treated on a an out-patient basis. E's mood swings and lack of response to therapy needed something more.

The day after her pronouncement about being a able to fly, we went to L hospital in Memphis where even the admitting clerk (a psychologist in training) said he though that she sounded bipolar.

We were initially told E might be in the hospital 4-7 days. Fourteen weeks later we were still there. She was in-patient for a week or so, then day treatment (intensive all-day therapy, but coming home at night) then she got to intensive out patient (IOP) but fell into depression and was hospitalized again into in-patient and went through the same stages-day treatment and then IOP.

This was written while she was in day-treatment and was getting better:

One day my daughter told me she could fly. She told me she was going to go to the top of a tall building and show me. The next day I watched her driven off in a white van to a place where they locked her up and took away her shoelaces. This place became our 'alternate universe' a place of which we had known nothing before. But it also became our salvation.

Later my daughter would be described as psychotic, having chaotic thoughts, extremely paranoid, manic, depressed, suicidal, self-injuring. Each word falling on my heart like a hammer. Words a parent should never hear spoken about her child. Who was this girl they were describing? The same little girl I nurtured and loved was now someone I didn't know.

But the white van had driven her off to a place where we finally got some answers and a light began to appear at the end of a very long, dark tunnel.

For an entire year we had a doctor who misdiagnosed her, refused to listen to us and very nearly killed her. A doctor who kept putting her on increasing doses of a medicine whose black box warning says "May cause suicidal thoughts in children and adolescents". A doctor who refused to listen when she told him she did not sleep for three days straight, could not concentrate, could not sit still, that she knew the answers to all the world's problems, that she was hallucinating, that she was slicing up her arms, that she felt like killing herself.

"More Zoloft, more Zoloft, more Zoloft."

Then finally a therapist who said to us "This is beyond what I can treat. This needs a hospital." A therapist who saved her life. A therapist who sent us in the right direction. After a year of denial "My daughter does NOT need to be locked up in the psych ward" I finally listened and admitted that we were in way over our heads and she finally got to a place where the right help was waiting.

There are no words to describe what it feels like when your child is locked up ‘for her own safety’. Where signs on the wall say: BE CAREFUL-ELOPEMENT RISK. Where you are allowed a 5 minute phone call twice a week and the second night she is there you are not even allowed that because the director of the program has not met your family yet. But you are not told this and you spend the night not sleeping wondering why you cannot talk to your child. Only 2 hours of visiting time twice a week and one of those hours your child cries the whole time because she wants to go home so badly. You do not sleep that night, either. What are the words that can be used to describe the rules- no belts, no drawstrings, no shoelaces. Stick your hand out of your room if you need to go to the bathroom and we'll watch you every step you take. No, your child is not allowed her retainer or a paperclip on the papers we give her- she could use them to hurt herself.

Slowly, but surely, this new world becomes a place of refuge, not fear. A place where you realize that the only goal is to help your child. A place where they aim to make families whole again and children able to cope with what life throws at them.

A place where the kind and concerned doctor gives you a CORRECT diagnosis. "Your child has rapid cycling Bipolar I disorder" and despite the fact that the diagnosis is difficult, finally hope because now, just maybe, something can be done.

Finally the absolute terror of an entire year beginning to lift. The fear that if your child is missing from school for 15 minutes that she is dead dissipating as more and more hope enters your life. You watch in amazement as the dedicated therapists give your family and child tools to deal with all the specific problems and you get to the point where you actually enjoy the family therapy because it opens your eyes and gives you new insights. You realize that people are there to help you not to judge or tear you down. You connect with other families who know what it is like to go through the horror and terror and who also give you understanding.

Our amazing family therapist once said to our group of hurting and scared families "The road to recovery might not go smoothly. There may be bumps in the road." And certainly our road did have a huge bump. We went through in-patient and partial hospitalization and intensive out-patient-the lowest level of care- and she spiraled out of mania into a mixed state and then a full-blown depression. She did some frightening things and on a Friday morning, I called my sanctuary to tell them what she was doing and they told me 'She needs to come back. Right now we need her to be safe." Back to in-patient. The initial ‘4-7 day hospitalization’ turning into weeks. But no one was going to let her crash, each and every person in our alternate universe and many, many in our ‘real lives’ helped us and guided us through it.

We are entering week 8 in this new world. Things are so much better and continue to get better. I no longer fear that I am going to lose my daughter because I know there is a haven to go to. I know that they have helped her change, I know that they have helped US change as a family, I know that the pills she swallows help her and not hurt her, I know that our doctor is going to listen to us, I know that she will be cared for, but more importantly that she will learn to care for herself.

My gratitude to all the people who have been helping us through this is so deep and profound that I can barely express it.

The alternate universe has a name-it is L Hospital.

8) Why Won't He Listen?

2009-12-24T15:04:00.001-08:00

A couple of months prior to the full-blown mania, my husband F and I had been sitting in the office of the 'best pediatric psychiatrist in the city". We had been asking him if it was possible that our daughter could have bipolar disorder instead of simple depression. We were told that it was categorically not possible because 'There is no family history."

E's behavior was so frightening that we needed to trust someone. We honestly felt that her life was in danger. We need to rely on a professional. We were blaming ourselves for what was going on. Where had we failed as parents? All these difficult and scary emotions were wrapped up in believing that the doctor knew what he was talking about. After all, he had the medical degree, not us.

The doctor told us that one way to know for sure if someone had bipolar disorder was to put the person on an SSRI like Zoloft because that would induce mania. But according to this psychiatrist, that hadn't happened. The periods where E seemed to improve were actually hypomania but the doctor had refused to listed to E when she told him that she didn't really feel 'better', just different and the periods between the depression were not pleasant, euthymic periods: she felt irritable and out-of-control. The doctor chose to ignore practically everything E said to him. As a parent I was so desperate for some hope that things were improving, I didn't see the periods of hypomania for what they were until things got really bad.

E would later tell me that when she told the doctor she was hallucinating, he actually told her "No you're not."
He actually accused her of getting on the internet and MAKING UP her symptoms when the exact opposite had occurred. E had put her symptoms into a search engine and was coming to the conclusion herself that she showed signs of bipolar.

A couple of months prior to the full mania, we had also asked the psychiatrist if it was possible that E had temporal lobe epilepsy. We had been doing some research and had found out that temporal lobe epilepsy can sometimes present with psychiatric symptoms. "Given her medical history of extremely severe epilepsy as a baby.. is it possible she's having seizures again?" Again we were told no. The doctor knew one type of temporal lobe seizure- the person picking at her clothes and smacking her lips. E didn't do that, so this could not be temporal lobe epilepsy. Which, he claimed "You can spot from across the room." He failed to entertain the possibility that there were other ways that temporal lobe seizures manifest.
We begged for an EEG and an MRI. He thought them unnecessary. He blamed the fact that E kept crashing into depression on our lack of consistency with therapy sessions.

Utterly defeated, we let things continue as they were. We got a different therapist and kept watching our daughter descend further and further into depression until we got to the day she told us she could fly.

7) A Terrible Choice

2009-12-24T15:03:00.002-08:00

In May of 2008, I received the call from my brother that I had been dreading: my father, who was suffering from kidney cancer, had 3 weeks left to live. I had to plan a trip to England with all of the kids so we could all see him one last time and say goodbye. On the day that I got this news, E seriously threatened suicide. I was facing the choice of hospitalizing her in a psychiatric facility while I flew 3,000 miles away to see my father or staying with her and not being able to say goodbye to him. I was also facing the agonizing worry that she'd regret her whole life never having a chance to say goodbye to him if I put her in a hospital. I played a hunch that the trip to England and getting away from school for a bit would actually do her good. We consulted with the psychiatrist who gave us his e-mail and told us that we should call or e-mail if we needed him and to consider psychiatric facilities in England if she really looked like she needed hospitalization.

It seemed that the hunch had been right and E again seemed to 'recover' and become happier. Later she would tell me that she had been manic at the time of her grandfather's death and still feels guilty that she was 'up' at a time when she should have been depressed. This, however, gave us further evidence later that what we were dealing with was not a simple depression. Again, the outside circumstances seems to have little to do with her mood.

My father passed away peacefully at home with his children surrounding him. My brother had come from Switzerland, my sister from Australia and me from the United States. This was a great testimony to the wonderful life he had given his three children- we have lived all over the world and were influenced by an amazing man. He got to see his eight grandchildren and say goodbye to them.

When we returned to Memphis in July, E became depressed again. The depression lasted a long, long time this time until finally in January of 2009, the Zoloft finally sent her into a full-blown mania.

E was having trouble sitting still in class, she was fighting with teachers, she wasn't sleeping. She'd call people she didn't know at 3 in the morning. She danced all night, she took the dog for a walk in the middle of the night, she spoke a mile a minute. She had all kinds of grandiose plans: moving to Alaska, moving to Iceland. Her thoughts seemed to flit from one subject to another with no rhyme or reason to where they went. She wrote a 200 page book in two nights. She downloaded 42 songs from itunes in one go.

All of these symptoms are manic, but we didn't know this at the time. Mania involves grandiosity, paranoia, hallucinations, overspending, insomnia, pressurized speech, anger, racing thoughts, no regard for safety, hypergraphia. She had it all.

Then in the midst of all the other strange things she was doing, E suddenly told me that she could fly and that she was going to go to the top of a tall building and show me.

6) Descent

2009-12-24T15:03:00.001-08:00

E began to withdraw from her friends. No longer did teens come to our house to hang out. She began to seem angry and irritable. She would fight with her siblings all the time. She wrote stories with dark themes of death and drew frightening pictures that involved knives and nooses.

My oldest daughter said to me "Mom, I think what she's doing is way beyond normal teen behavior."
Indeed we were to learn just how far beyond when she went away on a ski trip with her school.
In February 2008 the annual ski trip to Gatlinburg, TN was planned. E had to be cajoled and almost forced to go. At that point she did not feel like being with anyone.

I took the opportunity to clean up her room while she was on the trip. As I was cleaning I found a notebook, open, under a stack of other books. The notebook was her journal and it was open to a page that described her suicidal thoughts and that she was self-mutilating in the form of cutting her arms. I went into the bathroom and almost threw up. I was a wreck. I screamed and cried. I called the chaperons of the trip and told them what was going on and that they should watch her every minute.

When she got back, I confronted her and asked her what we could do to help her. We immediately made an appointment with her pediatrician and a therapist. She began to get weekly therapy, but her depression wasn't lifting and the therapist told us that she needed medication.

We needed a psychiatrist and my boss recommended one of 'the best pediatric psychiatrists in the city'. He listened to what had been happening and diagnosed her with depression. He put her on Zoloft and she continued therapy.

Things seemed to get better. E's mood lifted and she was able to start to 'get back into life'. After a few weeks of this, she suddenly crashed back into depression again. She was unable to get out of bed, angry as before and was beginning to have thoughts of suicide again. She was also cutting again. We went back to the doctor, who prescribed her more Zoloft.

The cycle continued. E would seem to 'get better', then she'd crash into a debilitating depression. She seriously thought about suicide twice and if her pills had not been locked up, she would have attempted it. The serious suicidal ideation was something we found out about much later.

Therapy did not seem to be helping. Her 'recovery periods' and her depressions seemed to have nothing whatsoever to do with the outside circumstances of her life. Nothing changed between the depression and the up moods. Her home life was good and school was going fine. It was hard for her to explain why she felt so, so bad.

5) Seizure free, but for How Long?

2009-12-24T15:02:00.000-08:00

E amazed everyone and continued to develop seizure-free for many, many years. We kept her on the diet for 2 years and at three-and-a-half, we weaned her slowly. Even at that age she understood that what she had eaten was different than what other people ate. The first time she was given a Fruit Roll-UP, she handed it back to me and told me she could not eat it. The weaning proceeded well and E remained seizure-free.

One of my deeply touching memories of her childhood is when she was in 4th grade. She had a big part in the school play. She got up on stage and delivered her lines perfectly. Everyone who knew what she'd been through was weepy admiring how far this child had come.

E's elementary school career was one of excellent grades, non-stop reading, amazing stories, amazing drawings. Things we NEVER thought would be possible.

I had three more children after E: our sons- A and D and another daughter-S. All of them are healthy, none showed signs of infantile spasms. Everything was going along so well.

Fast forward a few years and in the summer of 2005, a new trial was awaiting us.

After living in New Orleans for 16 years, our family was faced with the possibility that Hurricane Katrina was going to wipe everything out. Wash everything away. One Saturday night, we threw clothes still wet from the laundry into cases- three day's worth: every hurricane warning we'd ever been through, we were home again in three days- and prepared to evacuate to Memphis, six hours away.

Our oldest daughter, T, had been going to boarding school in Memphis as there was no Jewish high school in New Orleans. She arranged for us to stay with a family she knew. They were happy to have us for 'maybe around three days'. Six weeks later we were still living in the K's house- our city destroyed, our jobs lost, our friends scattered-total devastation both physical and mental. It was a long, long time before we were anywhere near normal functioning.

We decided to stay in Memphis. We slowly began to rebuild our lives. We got new jobs, the kids began to adjust to their new school. Everyone learned to be happy and secure again. E was in 8th grade at this time and she was making friends and welcomed by the Memphis kids. Still doing really well in school, she had an active social life and was well-liked.

Then things began to fall apart for her....

4) The Magic Ketogenic Diet

2009-12-24T15:01:00.000-08:00

It was back to our local neurologist to try and get some answers.

She told us about a new drug called Felbatol. She was a little reluctant to try it, as it had not been tested well in children, especially children as young as E, who was 18 months old. It also can cause aplastic anemia, which is fatal. Felbatol, even today, is severely limited in its use.

There was also no way to know if it would treat infantile spasms. There was no way to know what the side effects would be for E.

I had a wonderful book in my arsenal of epilepsy books, Seizures and Epilepsy in Childhood by Dr. John Freeman. He's a doctor at Johns Hopkins hospital and they had a program that used a diet called the ketogenic diet. The book contains one chapter on the diet and it sounded really intriguing.

I went to the medical library at our local hospital and read all I could get my hands on about the ketogenic diet. The diet was a very old treatment and had fallen into disuse somewhat. The books I was looking at were from the 1920s. It definitely didn't seem mainstream treatment any more.

But the more I read, the more I wanted to at least give it a go. Did we have anything to lose?

Armed with information, I returned to our neurologist. "I want to know if we could consider a rather unorthodox treatment?" The doctor was willing. That was a blessing. I found out later many doctors were very reluctant to try this diet at the time.

We arranged a date for E to be admitted to the hospital. We were getting good at this hospitalization routine. E was eighteen months old and had seen more doctors than I had seen in my entire life.

The ketogenic diet mimics a state of fasting in the body. E would basically be starved for a period of time until her body began to produce ketones which could be measured in the urine and blood.

After the initial true fast, the effects would be maintained by carefully limiting her carbohydrates and protein and feeding her large amounts of fat. Her body would treat the fat as if it was burning its own fat, a metabolic state known as ketosis.

Most of her calories would come from fat, in fact. Everything would have to be carefully weighed and measured. Even her water intake was to be limited. Any deviations could throw her out of ketosis.

I had to buy a special scale that measured to the nearest gram -- a difficult piece of equipment to find. At one point T said "Right... E cannot have food anymore, she can only have grams."

Everything had to be fine-tuned to find the perfect balance. It took us approximately a month of working with the doctor, nutritionist and E's food preferences until we got it right.

We had to wean her off Tegretol because it contained sugar. Even toothpaste could be a problem. And we had to learn which high-fat foods she would actually eat.

For babies on the ketogenic diet, heavy cream makes up a large part of the fat intake. E was weaned from the breast and started taking cream in a bottle. We learned not to leave a cream-filled bottle in the car unless we wanted butter. One time I was buying her cream supply for the week and the cashier at the supermarket said to me, "You sure like dessert!"

Weighing and measuring became a daily fact of existence. E was on a 4:1 ratio. She ate four times and much fat as protein and carbohydrate combined. This was long before low carb became a national trend. How much easier the diet must be to administer nowadays. We had to become experts at reading food labels.

My parents were visiting from Europe after E had been on the diet for over a month. We were all sitting in the living room when suddenly my father said, "I haven't seen E have a seizure today."

We looked at each other, startled.

"J, have you seen her have one?" "No," I said. "F, how about you?" He had not. Mom had not either.

We barely dared to breathe. Could this be the miracle we had been hoping for? Was E really seizure-free?

3) We Begin To Get Some Answers

2009-12-24T15:00:00.000-08:00

About the time that E was 8 months old, I heard of a doctor in Los Angeles who specialized in infantile spasms. I was desperate to see him, but I was looking at spending a lot of time in L.A. and we were not exactly rich.

How on earth were we going to pay for airfare, medical bills, and living arrangements? Our older daughter was still very small. What was I going to do with her? The odds seemed stacked against us.

But things worked out. Grandma from Florida came to take care of T. Our Rabbi raised money for our airfare and the Los Angeles Jewish community opened their homes for E and me. We were on our way. I encountered much kindness, including the flight attendant on the flight over who offered us her house when she heard why I was going out there.

We ended up staying with a lovely family. There were four kids in the family (which seemed like a huge number to me at this point) and the youngest had both Down syndrome and infantile spasms. Marcia R. was an inspiration to me. She was a wonderful mother and her son was thriving. She was an extremely upbeat person and she refused to let me give in to my sorrow.

In Los Angeles, I went to see the doc. He was a little hard to deal with -- abrasive and cold -- but he was an excellent doctor. The first course of treatment he used was to our E on a DOUBLE dose of ACTH.

TWO painful injections every day. Twice the screaming, twice the symptoms. More trips to the ER for even the most minor cold. It was horrible.

I almost gave up hope completely because it didn't even work. She continued to seize, she was miserable, she was still not developing skills. I was in a strange place away from my family.

Our doc decided that E could benefit from a PET scan. Since one side of her body was weaker, it could indicate a focal point from which the seizures were originating, making surgery a possibility.

The PET scan involves injecting a radioactive dye into the body. The machine detects radiation from the emission of positrons and a diagnostic image can be acquired. It sounded all very high-tech and futuristic.

The morning of the PET scan, we arrived at the hospital and E was prepped. All was going well until we heard sirens and saw helicopters circling overhead. Down in the ER, a crazed gunman had taken some doctors hostage and was demanding drugs. We were locked down in the hospital. The test was disrupted and we had to have it rescheduled.

After all that, the PET scan was inconclusive. Another hope dashed -- surgery did not look like an option.

The doctor decided to try a slightly unusual drug to treat the infantile spasms. Even though Tegretol is a common anti-epileptic, it is not often used for this particular type of epilepsy. We were going to slowly wean her off ACTH and add Tegretol at the same time. I remember the sticky, orange liquid that E gladly opened her mouth for. Such a pleasure after blunt needles and her poor pincushion legs.

Tegretol began to work really quickly. Within two weeks of admission, E stopped having seizures. The doc said he had never seen it work so fast. Then the abrasive, somewhat cold doctor made a joke: "I believe the medical term is 'weird'!"

Marcia and I laughed later at the neurological joke. Another thing makes me chuckle all these years later. E had at least 15 EEGs during her treatment. Once I was in the hospital cafeteria getting a salad. There was a bowl marked 'EGG' on the salad bar. I stared it for ages trying to figure out why they had named a salad ingredient after a medical test -- one-track mind, I guess.

After 13 weeks in Los Angeles, Tegretol was working so well that we were able to go home.

T, grandma from England, and Daddy had been able to spend a few days with us in Los Angeles right before we came home. We spent a wonderful day at Universal Studios. Wonderful except that one man decided that it was worth his time to get out of his entrance line to come over to ours and comment on E's appearance.

Still, that barely marred the day. Tegretol was working, E was happier, the sun was shining, and my family was with me. There was hope. I remember that day as extremely happy.

We had four blessed months of seizure-free days. The EEG still wasn't normal, but things were better. Then on the morning of my older daughter's third birthday, E had a breakthrough seizure.

2) Progression-Things Are BAD

2009-12-24T14:58:00.000-08:00

Infantile spasms is sometimes called West syndrome, especially in Europe. What is tragic about that name is that Dr. William James West was describing the progression of the illness in his own child.

The drug of choice to treat infantile spasms is a corticosteroid called ACTH. It's very expensive and hard to find. I would find myself going to 10 different pharmacies -- one vial here, one vial there.

The drug is a thick gel that has to be administered by injection. In the hospital, I had to learn how to give the injections by practicing on an orange.

The needles were very thick and difficult to insert, and a baby wiggles and cries much more than an orange. Sometimes the needle would be blunt and I would end up jabbing E's poor leg.

ACTH has some pretty awful side effects. It lowers immunity. Any normal childhood illness thus became potentially life-threatening. While E was on ACTH, chickenpox went around my older daughter's school. Neither child caught it. We were lucky. The lowered immunity did make her a target for thrush so bad that it completely covered the inside of her mouth and most of her face.

Along with the lowered immunity came an extremely Cushingoid appearance. The face swells. E's eyes were barely visible. Along with the thrush this altered my beautiful baby's appearance quite drastically. People felt compelled to tell me that she was ugly and too fat and that I was a bad mother. Incredible -- they knew nothing.

I have heard that parents of children with autism deflect cruel remarks by refusing to engage ignorant people in conversation. Instead, they have pre-printed cards that they hand out that say My child has autism. If you would like to know more call the Autism Society of America.

I wish I had thought to do something similar; it would have spared a lot of heartache. I would break down in tears when the person was out of sight.

ACTH causes babies to feel miserable. E had steroid rages where she would scream as if in extreme pain. This was always completely unpredictable. Once I was accused of abusing my child while I was shopping for diapers and baby food for her. E was in the midst of a rage and there was nothing I could do to help her.

E stopped sleeping on ACTH, she wanted to nurse constantly and cried nonstop. Once she cried so hard that she lost her voice. She refused to make eye contact, she never smiled, and her developmental skills dropped to zero. We were all under a huge amount of strain. One night my husband came home from work and I just handed the baby to him and left the house. I had to go somewhere quiet.

The worst thing about ACTH was that it didn't really help the seizures much. They never stopped. The EEG was modified only slightly and her development seemed to be going backward. We were all miserable and there seemed to be very little hope.

Things were really bleak. F and I had been married for five years at the time and together for seven. In those seven years, I had never seen him cry. He sobbed in my arms about E. I didn't stop crying.

ACTH was supposed to work. Now what?

I had seen a story right when we were about to leave the hospital about brain surgery for babies with seizures. I had been frustrated that check-out was taking so long and had merely turned on the TV to pass the time. It seems I was meant to have heard the story.

It seems that babies' brains are resilient and if a radical hemispherectomy is performed, in which the half of the brain which causes the seizures is removed, then the other half can do a fairly good job of compensating. The younger this is done, the better.

So there we were seriously considering removing half of our daughter's brain, thinking that it was a better solution than the constant onslaught of seizures.

1) The Beginning-Infantile Spasms Invades Our Life

2009-12-24T14:50:00.000-08:00

Move back in time to 1992, a beautiful 4 month old baby:

I have always wanted to be the mother of a large family. My husband and I were looking forward to having a house filled with the laughter of many children.

Our second child was diagnosed with a serious, debilitating illness called infantile spasms, it seemed that our dream would be dashed.

E was born in 1992 and a sibling for her big sister, T, who was 2. E was a gorgeous, happy baby, and my husband, F, and I were over the moon enjoying her. She smiled early and gazed at us with her big, blue eyes. Her smile and her eye contact were two things we would lose in the coming months.

When E was 4 months old, she started to cry a lot. We should have known better than to write the crying off as colic. Colic normally ends at 4 months old, not starts. There is a strange phenomenon called denial. It could not be possible that something was wrong with our beautiful baby.

Those strange little movements she was doing were surely due to a baby's immature neurological system. All babies made odd little movements, didn't they?

We had no idea we were looking at something extremely serious.

At six months E had still not rolled over or used her hands. She continued to cry and scream and make the odd movements. Denial was over. Something was wrong. We could no longer say "She'll roll over tomorrow. Give her time."

The morning of her appointment with her pediatrician E was sitting in her baby seat and she had a series of the movements in a row. Her eyes rolled back in her head and she let out a shriek. This was the worst I had ever seen and I was terrified. My husband and I both went to the pediatrician. The doctor put E on the examining table and lifted her up by her arms. E's head flopped backward and the pediatrician said, "Her head control is terrible."

I heard nothing after that. I left the room and went into the hallway where I leaned against a wall and cried hard.

After a while I was able to re-enter the room and listen to more of what the doctor had to say. "I suspect cerebral palsy, but I am not sure. We need to admit E to the hospital so we can do extensive testing. We need to get to the bottom of this."

One of the tests recommended was an EEG. The doctor said the strange movements could be seizures. Seizures? I thought seizures were all-out convulsions. I never knew they could be as subtle as a head bob.

A flurry of activity ensued. Making sure our older child, T was taken care of, packing a case for a long stay in the hospital. One thing I did was to call my parents who then lived in France. They have always been my rock in difficult times. "E is very sick. It's serious. We do not know what it is."

That's all they had to hear. They drove through the night from Lyon to Paris and boarded the next plane for the U.S.

Getting a squirmy baby to sit still while a technician attaches a myriad of electrodes to her head is not easy. I nursed E while the EEG was being performed. It was to be the first of many EEGs. I became an expert at removing glue from fine baby hair.

The EEG results helped the diagnosis to cement. An awful diagnosis. E had a characteristic EEG pattern called hypsarythmia. The hypsarythmia, seizures, and developmental delay lead to the diagnosis of infantile spasms -- an innocuous name for a devastating disorder.

Bad as this news was, there was worse to come. Infantile spasms can either be a disorder in itself or a symptom of a larger disorder. It can be cryptogenic or symptomatic. We didn't know yet if she had the cryptogenic kind or the symptomatic kind due to possibly a brain malformation, tuberous sclerosis, Down syndrome or Aicardi syndrome.

Further testing ensued including genetic testing, a Wood's lamp to test for tuberous sclerosis, and MRIs and CT scans to check the brain structure and function.

E turned out to have cryptogenic infantile spasms. The cause will probably never be known. Was it the high fever I had in my first trimester? Something I was inadvertently exposed to? I cannot even begin to speculate.

Ironically, the diagnosis of 'not knowing why' meant a small glimmer of hope. Babies with cryptogenic infantile spasms tend to have a better outcome. Still, the prognosis was incredibly grim: severe developmental delay, difficult to control seizures, physical problems. "We do not know if she will ever walk or talk," the doctors told us.

E was admitted to the hospital during the Hannukah season. According to our tradition, this is a time of miracles. We were going to need a huge miracle.