Monday, January 30, 2006

More on meds...

Thanks in part to Zilari's comment to my last post (which I entirely agree with), I realise that I need to explain a bit more about our decision to use medications with B- how it all came about, some personal history on the subject, & our philosophy concerning the use of medications with our child.

B was "officially" diagnosed by a pediatric neurologist as having Asperger's Syndrome when he was 6 years old. This diagnosis came one year after he was first evaluated for severe developmental delays, & we sought the neurological evaluation because his psychologist & his visual/perceptual therapist had mentioned that B seemed to them to be on the spectrum. At his neurological examination, B was given a few possible "diagnoses", including Tourettes, non-verbal learning disability, & something not yet in the DSM, called "multisystem developmental disorder" (which refers to autism-like symptoms which develop later into psychiatric conditions). The neurologist stated clearly, however, that B's educationally handicapping condition was autism & should be his primary diagnosis for CSE purposes. We have since started using classroom & home strategies used for kids with non-verbal learning disabilities with B, & the Tourette's diagnosis was officially put into place last summer after his long-time perseverative behaviours coalesced into classic Tourettes tic-behaviour. At the time, my brain just sort of skimmed-over the "multisystem developmental disorder" part- more on that later...

At this time we were offerred the option of putting B on medication to help with the behavioural part of the Aspergers symptoms. I don't even remember what the drugs were, I was so opposed to the idea. I explained that we tried to use herbal medications as much as possible with B, & the neurologist was able find us information on alternative medications. The best information seemed to be on the use of vitamin C to help with tantrums/meltdowns, so we began a mini-trial, using it for a few weeks & then stopping it. We found that we did notice positive behavioural changes on the vitamin C (1000 mg. daily- which meant we had to be careful not to give him anything else fortified with Vitamin C lest we overdose him...). We continued this for 2 years, when the OCD took over everything (including behavioural charting) & threw them out the window.

The reason I have such strong feelings against medications that cause brain chemistry/behavioural changes begins with my childhood. My father, who was also my abuser (see "History pt. 1" in the January archives), was bipolar (manic-depressive) & had been since before I was born. He was a very intelligent person, but his mental illness & the way it was (& wasn't) treated in the 1950's- 1970's made my whole family's lives hellish. I remember vividly the handfull of colourful pills daddy took every day. I was fascinated by them, but never knew what they were for until I was an adult. When I was a teenager, in the early 70's, my father found a new psychiatrist who admitted him to the psych unit of a local hospital to "dry-out" so that he could start newer medicine for bipolar disease. This was the first time I knew that my father was mentally ill, & although this did signal a positive change in my father's ability to cope with life in general, it was too late for me to have any trust in him. My experiences with his out-of-control behaviours are strongly intertwined with the colourful little pills he took, & are the basis of my aversion to psychiatric meds. I went through my own recovery from the incest with no medical intervention because I was afraid that if I took medicine then I would be like him... It wasn't until I experienced severe postpartum depression (made worse by having developed thyroid disease as a result of my pregnancy) that I agreed to try antidepressants. Once B had weaned himself, I had tried every herbal remedy I could find & nothing was helping. B was around 15 months old, a high-needs child, & I was not coping & knew it. I contacted my therapist & she strongly urged prozac. I agreed to try it... & the evening I was to begin taking it I just freaked-out. I was terrified that I was becoming my father by taking that pill. C called my therapist & she talked me down & made room for me the next day in her schedule. I took the pill. I slowly came to terms with it... but I didn't like the side-effects, nor the feeling of observing the world through a plate-glass window. The side-effects caused me to switch to zoloft, which I tolerated better. I finally began to engage in life again & take on projects, although the sense of being somewhat removed from life made me sad (but not depressed- !). Nine months into my anti-depressant life, in the middle of participating in the planning of a continent-wide church conference to be held in our town that summer, I began experiencing strange twitches & full-body spasms. C felt me go into spasm one night, in bed, & realised that I was experiencing serotonin overdose symptoms. It was his turn to freak (a bit- he's calmer than I am :). He had me contact my doctor & the news was that I had to stop the antidepressants... I panicked because I had taken on a big responsibility & was not sure I could go through with it without them. C assured me that he'd fill the gaps & do the things, like making phone calls (the first thing that goes when I am depressed), that I couldn't. I also researched the herbal solutions more in-depth & decided to try St. John's Wort capsules as soon as the zoloft was out of my system. Thanks to C's support, I got through the transition, and the conference, & found that the St. John's Wort capsules did help with the depression. The added bonus was that I wasn't living behind the plate glass window any more.

Fast-forward to nearly two years ago ago...
Right before his 8th birthday, B began having trouble making simple decisions, worrying excessively about outcomes, melting down when faced with too many choices. With Dr. M's (B's psychologist) help we tried different strategies to help him cope, but things just kept getting worse. A classmate that B had had a falling-out with the previous autumn became the focus of alot of B's anxiety at school. He couldn't sit where he could see this kid, sometimes couldn't be in the same room. B's anxiety started to interefere with his ability to do his school work, no matter how creative his teacher was in trying to keep him engaged. There was a new adult in the room, a personal aid for another classmate, who seemed to intimidate B, too. B was losing control over impulsive behaviours, too, & would do bizarre things like cut the cords to the computer mice at school. We were completely flummoxed by this. Then one day I got a call from the former special ed. co-ordinator at school: B had tried to "zap" himself by putting a paper clip in a wall socket. B wasn't hurt, but the teacher was in tears along with me, on the phone. When I got to school & sat down with the teacher & B, he said that he didn't want to exist... I don't think I'd ever been so frightened as a parent. We got in to see Dr. M, who suggested it was time to get B in to see a psychiatrist, since this seemed beyond our attempts to handle with behavioural therapy. With Dr. M's help, we were able to get B in to see a very well-respected child psychiatrist (with very efficient trolls guarding his doors :). After evaluating B, Dr. E thought prozac might help. Since this was the most benign drug on the list of possibilities, we agreed. B's behaviours were getting more bizarre & he was clearly not enjoying any part of his life. He tried to tolerate school, but some days had to call me to come & get him because he was so overwhelmed by anxiety. He stopped progressing in his school work & it shows very clearly in his 2nd grade portfolio- you can pretty much tell when the OCD began by looking at his work. He started using paper clips to poke himself, sometimes drwaing blood. He also began to have trouble with people touching him, or touching things others had touched. He couldn't sit in chairs at school, use pencils anyone else had touched, & would sometimes scream & run out of the room if someone bumped into him. I bless the kindness & creativity of his teacher & the other adults at school- B's classmates never ostracised him for these behaviours & he was never made to feel any worse about them (than the feelings that caused them in the first place...). All this while we were slowly increasing B's dose of prozac to the weight-predicted optimum dose. Unfortunately, when we finally got there, the prozac caused him to go manic/psychotic. The anxiety became so acute that he was hitting himself & needed constant watching. I remember trying to restrain him from hurting himself & realising that we had to get a handle on this problem before he got too big for me to sit on! Dr. E suggested trying seroquel, a mood stabiliser, & withdrawing B from the prozac. Although we had reservations about the side-effects of the seroquel, we needed to do something, so we did both simultaneously & B's behaviours started to calm somewhat. He was still over-stimulated out of the house & couldn't walk down the street without twirling every time a car went by. There were certain stores that he couldn't go into, & luckily he was beginning to understand what was going on. When I asked him why he got so agitated in certain places he could articulate quite clearly what was bothering him, which made it easier to know where I could & couldn't take him. During this summer, B developed a morbid fear of spiders, which caused us to cancel one of our planned vacations, to our church family camp, since most of the buildings there are infested with spiders. B developed an aversion to his thumbnails & wouldn't use his thumbs to do anything. I found that taping them with surgical tape helped some, but he would get hysterical when the tape fell off. B also got to the point where I was the only person who could touch him. Dad could tap B's foot with his own, but that was it. No hugs for or from Grammie or anyone else...

Slowly, through the summer, B started to respond to the seroquel. By August dad could touch him. B was able to stay with a sitter- only Paula's son C, though, but we started getting out again. The worst part of the seroquel was the effect it had on B's body. B gained 15 lbs. in just the first few weeks & developed breasts, which he still has. I looked for clothes B was comfortable in & that gave him good coverage for his new girth, since we didn't want him being teased on top of everything else. Before the school year started, C & I researched the OCD & arrived at our pre-3rd-grade meeting with B's new teachers armed with strategies for coping in the classroom. The consultant teacher assigned to B's classroom bonded quickly with him, & his classroom teacher, Jen, had a good mix of flexibility & boundaries which fit B's needs very well. When it became clear that B's fine-motor skills would interfere with his ability to write his work, they brought one of the media centre computers into the classroom for B to use. To help B's self-esteem during this crisis, C & I had given B our old Mac Performa computer as his very own, so he was "Mr. Computer" & happy to show anyone who needed it how computers worked :)

Although B's behaviours have never since regained the "normal-for-him-ness" of pre-OCD, with the medication he has been able to get his life back on track. He has the normal 9-year-old fascination with farts & burps & other gross things :) His reading has progressed from 2nd-grade level to 7th grade level in just 2 years (yikes!) & he's at grade level in his other subjects, & enjoying learning. B knows that the seroquel is responsible for his weight gain & need for occasional blood tests (it predisposes him for diabetes), but also understands that we feel it's essential for his functioning. Because of the seroquel we've become much more aware for the need to eat healthy foods & have worked to change our eating habits accordingly, with the result that both C & I have lost weight- yeah!! In all, B has a zest for life & enjoys many activites.The only times that this changes is when he's "outgrown" his meds & needs to have the seroquel dosage increased.

I have learned a great deal in the past 2 years. I have learned not to mind having a child who's behaviours make him stand out in a crowd. I have learned to be grateful that I dealt with my main hang-ups about psychiatric medications before my kid needed them. I know that B needing anti-depressants makes him no more like my abusive father than I was when I needed them. The "multisystem developmental disorder" that I mentioned earlier does make me wonder if what we're seeing is early manifestations of the psychiatric problems associated with this, but whatever the label put on the OCD/anxiety- psychatirc or behavioural- what really matters is how well we help B deal with it. I have developed a strong sense of B as a whole person. Even though I wish he didn't need medication to function, I wouldn't change any part of him lest it change the person he is, deep down. I love that person very much & B knows that I wouldn't change him for anything. I just wish I could come to terms with the changes seroquel has made in his body, It's such an obvious difference, a constant reminder that we have made this choice for him...

Writing today, remembering what it was like when B's OCD changed our lives, has helped to remind me of just why we made this choice, though. I have seen him grow so much just in the past couple of months, taking responsibility for finding tools to help himself overcome the OCD & anxiety. As scary as days like last Friday are, I can't help but feel hopeful. At essence B is a capable, bright, & creative person. The seroquel does not diminish this. It gives him the opportunity to be who he really is, without the crippling anxiety, & I just have to remember this when I struggle with my feelings about the side-effects. Certainly my ambivalence about it does not help B, any more than unquestioning, blind faith in what medicine can do would. I guess I'll have to develop "wide-open-eyes faith" in this scary-helpful stuff. And deeply enjoy the times when my kid can be the whole, loving, growing person that he is...

3 Comments:

At 10:50 PM, Blogger Zilari said...

Wow...it definitely sounds like B is doing better with the medication than without, and from what you describe he sounds happier, less distressed, and better able to learn. Those are all very important. Also, since you say the whole family is eating better now, then there is probably less health risk than there might otherwise be. I really am curious about the mechanism by which such medications can cause weight changes...if energy expenditure is greater than or equal to caloric intake, it seems that it should not be possible to gain quite so much, but it is. Metabolism is a very tricky thing, apparently. I was reading an article today about how animal metabolism does not work in the same manner that, say, a car burning fuel does...it is a more complex process, which is why some people can eat very little and still gain more weight than another person who eats a lot.

I can actually identify with some of what you describe of B's behaviors...though my anxiety levels were not quite near that level and I do not have Tourette's. I have wondered at times if I had OCD as a child as well, or whether it was just an anxiety response related to the Asperger's. When I was little there were certain stores and buildings that I absolutely refused to go into because they gave me a "bad feeling". Sometimes this was related to a smell, or certain types of decorations...and I recall being afraid of the library for a while due to the fluorescent lighting. I was also very germ-phobic and once got in trouble for putting on a paper-towel mask and running around with plastic Baggies on my hands when my brother was sick! (My parents told me I was going to hurt my brother's feelings, and I did not understand this, since I thought that meant they didn't care if I got sick too).

I also to this day will occasionally scream and run out of the room if someone bumps into me, though usually I just warn people in advance that bumping into me or sneaking up behind me, etc., is a very bad idea. I severely dislike being touched by anyone unless I know them very well and they are only permitted certain types of touch and at certain times.

So, this is rather a tangent I suppose, but from what I have observed there does seem to be a very obsessive aspect to AS. I think that this is a function of feeling overwhelmed and confused by one's environment, and feeling the need to control little things to reduce the sense of chaos. In B's case it sounds as if he definitely has some sort of neurotransmitter issue as well, since just adjusting his environment did not work well enough for him to function and be happy. At any rate, I do hope he continues to do well with the regimen that seems to be working. He sounds like a very neat, bright kid.

 
At 6:17 AM, Blogger not my blg said...

Hi, I was interested in your phrase "looking through a plate glass window" when you were taking prozac. I think I know what you mean but I'm not sure. Since being on prozac, Alexander doesn't answer some questions he use to be able to answer during his verbal behavior sessions, sort of like he is daydreaming.

 
At 11:26 AM, Blogger Lisa/Jedi said...

Thanks Zilari & allexander's daddy for your thoughtful responses. Writing this all down really helped me to focus on what we're doing & understand our reasons & history from a new point of view.

The "plate glass window" thing- I don't know how it would affect a child. Certainly B doesn't seem to hear me all the time (he's been on zoloft for nearly 1 1/2 years now) but that seemed to be a characteristic from before he began taking prozac & then zoloft. Between the Aspergers & the OCD, he's intensely "up in his head" a lot of the time & I often have him repeat instuctions he's been given to see if they've gotten through. **sigh** My experience was more of feeling not quite engaged with life, as though I was in part observing as well as experiencing it. I hope this was helpful...

 

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