Saturday, January 28, 2006

Life at the speed of B...

As I had hoped, B's psychologist, Dr. M, was pleased with the "toolkit" we are helping B create to deal with the OCD. We met with him yesterday morning & he & B seemed to have a good session. Then the 2 of us went to our favourite Japanese restaurant for lunch, which was lovely. All seemed mellow until B had been playing on his own for a bit with his newest lego, a spybot with programmable missions. B adores this sort of thing, but has the habit of assuming that he should know every little detail of how it works intuitively, so rarely spends much time with tutorials or FAQ's... with predictable (to any parent) results. The frustration level often rises until he's screaming with fury, ready to throw it all in the trash & cursing the day it arrived in his life. Usually we can sit with him, & in the guise of him teaching us how the thing works, he'll learn what he needs to work it right... but yesterday was different. After the angry explosion from his room, I found him on the floor in tears & could not move him. He was distraught. I sat & listened, questioned, repeated back to him what he was saying, all in an attempt to figure out what went wrong... the mission was too difficult & he'd never get it right... well, what was the mission in the first place?... and so on. As far as I could tell, he was putting the spybot through a maze of his own making & making it too hard for himself to succeed. I was rather flummoxed by this & tried to suggest that he make it a bit easier at first, then slowly harder, but he said he didn't know how to do this. Bit by bit, I was figuring out that the mission wasn't the problem. I managed to get him to show me the programme, but there was so much that he didn't understand- I asked him if he couldn't just use the less-complicated missions until he learned more, but that was "boring". **sigh** None of my established methods for helping B were working. I couldn't micro-manage it, macro-manage it, or learn how to do it myself. I wondered out loud if maybe he should take a break for a snack & then come back to it, which resulted in another descent to the floor in tears, This time I lost patience & hauled him into my lap, none too gently, rather than joining him on the floor. I don't know how long we sat, him crying inconsolably & me just hugging- it felt like at least an hour. My legs fell asleep & so did his. I was finally able to distract him with humour (couldn't feel my legs & told him so, then did an imitation of B jumping around to get the circulation back- I always think he's doing the "potty dance" when he does this, which cracks him up). Then he agreed to sleep the computer & come down for a snack. He kept hugging me & telling me I was the best mom- I think he was relieved not to be lost in distress any more. The depth of his sadness scared me too...

We got by until dad came home, then Grammie came to dinner as she usually does on Friday nights. He usually finishes eating before we grownups do, & gets to play on the computer or chat with us until dessert, but he was distractable at the table & couldn't sit very long. He had no interest in the computer, & requested that he be allowed to watch a "Jeeves & Wooster" episode, so we said ok. He was able to stop for dessert, but then had to go right back up to finish. Clearly he needed distraction... Grammie & C joined him, instead of playing a game as we usually do after dinner. B was ok until Grammie went home, but got "stuck" after getting jammies on & couldn't/wouldn't use his fluoride rinse & finish getting ready for bed. We tried to get an extra seroquel tablet into him (which the psychiatrist has ok'ed for emergencies) but he refused, which really upset me. He refused reading time too, just sat rocking on his bed in deep distress. I was at my wit's end, wondering if this was the night we'd have to take him to the emergency room. C decided to get him back in front of the tv & succeeded by enticing him with one last look at the Pokeman tape from the library that was due back today, & after watching a couple episodes, was able to get him into bed without a fuss. C came down & said B requested I go up for another kiss goodnight. When I went up, he apologised for being unco-operative & asked for a "quick minute". As I lay there beside him, I explained that I got upset because I was afraid. He said he understood. I left after a bit & he fell asleep...

C said that he had also been ready to take B in to the emergency room for something to calm him down, if he hadn't responded to the video. I told C that I believed B had outgrown his seroquel dose again &, after discussing it, he agreed. This is the third time in 1 1/2 years that B has outgrown his meds & it seems like we never learn... he always freaks out in some way, then we consult with the doctor, & up goes the dose. I hate this yo-yo-ing, but how else can we keep him on the minimum dose he needs to function? I have such deep ambivalence about B being on the seroquel in the first place. It changed him terribly- turned my skinny kid into a blimp (like he needs more social issues?) & puts him at risk for diabetes. On the other hand, without it he literally could not function. He would not be the sweet, loving boy he truly is. This anxiety/depression turns him into a brooding, snarling monster & the seroquel is really the only thing that helps him. I've had to get over so much in the past 2 years- get over the how the OCD behaviours look in public, the tics, the looks on peoples' faces when they see my cute kid jerk or twirl. I've done that, ok, so why can't I just get over the seroquel? He needs it! I can't bear the person he is when he doesn't have enough in his system- why do I feel like I'm feeding my baby poison?

Today started out rough, with B waking me up at 6:45 am because he was obsessively playing with & then dropping things while watching a dvd... Dad was at work (he goes in at 6:00 am on Saturdays just to do paperwork, then comes home around 8:00 am). B & I were pretty fed-up with each other by the time dad got home, & I was exhausted from the day before & getting up too early. Fortunately, with 2 of us to keep track of him, we got through the day without any more meltdowns to despair. We increased the dinnertime dose of seroquel, too. Since we're seeing B's psychiatrist this week, plus we know that he's had a significant weight-gain since before the holidays (& dad the doctor knows how much B can have based on his weight), plus it's the same pattern we've dealt with in the past, so we're quite sure that she'll be fine with it. I feel confident that life will be back to "normal" soon. But I feel so afraid when we have these "blips" in the "normal" routine... what if he develops diabetes & we have to take him off of the seroquel? How long can he safely take it? Will he ever be able to get his real body back? How can I continue to find clothes that fit him properly & allow him to feel good about himself? What will I do when he's too big to restrain/hold in my lap? How do I get him successfully to adulthood & beyond when his brain chemistry is so wonky? I am grateful for the long periods of relative peace- when we can help him find the tools he needs to be the best he can be & feel hopeful about his future. We've found the resources to cope so far... & we know that if we have to take him to the hospital, we will, & we'll survive it.

3 Comments:

At 3:43 AM, Blogger Zilari said...

It is my impression that humanity is still in the Dark Ages when it comes to healthy and appropriate treatment of mental / psychological issues with pharmaceuticals. Some people get lucky and find something that helps them with minimal or no side effects (I respond rather well to Concerta, which is an ADD medication) but others are less fortunate. I am actually really frightened from what I have read of atypical antipsychotics (such as Serqoquel, Risperdal, Zyprexa, etc.), as well as my own experience.

Risperidone was actually the first psych medication I was ever prescribed (as an adolescent), and I had a really terrible reaction to it (irregular heartbeat, zero emotional response to anything, severe detachment from reality, etc.). I learned later that some people, especially those on the autism spectrum can actually have serious health reactions to these drugs, and the fact that my heartbeat slowed down and became irregular meant that I should never get anywhere near a drug in that class again. It sounds as if your son is not experiencing this sort of sensitivity, which is of course good if the medication is helping him so much. However, the weight gain and predisposition to diabetes you mentioned is something to be concerned about.

Here is a link to a discussion of weight gain and medications: http://www.crazymeds.org/WeightEffects.htm

I think you are right to be concerned...after all, if a child is better behaved and happier but then becomes extremely unhealthy and at risk of serious physical illness, then any parent would wonder if they were doing the right thing. What other medications has your son tried? It is possible that there is another medication that could counteract the metabolism effects this medication seems to be causing? Basically, I see such meds as a "brute force" approach...almost like chemotherapy, but for the brain. That is, they knock out the major life-disrupting symptom but do not leave the rest of the person untouched as they would in the ideal case. It looks as if medical science needs quite a bit more advancement before being able to offer personalized and specific treatments.

 
At 7:21 AM, Blogger not my blg said...

Has the psychologist discussed with you a mood stabilizer. My 19 year old nephew has Aspergers and he is on a mood stabilizer which he says really helps him to "even" out.

 
At 1:24 PM, Blogger Lisa/Jedi said...

Thanks for your feedback, Zilari. You have inspired my more recent post, giving more of the back story of how B came to be on medications in the first place. Thanks also for the link!

Thanks, also, alexander's daddy. The seroquel actually is a mod stabiliser & that's just what it does for B :) I am reminded of a funny story about this phrase- B was at the pediatrician on an emergency basis, having bashed his head on the side of a counter while doing an OCD ritual for going through doorways. He had not seen the pediatrician who treated him before, & during the routine "what medications are you taking..." part of the visit, B listed them (we let B do as much explaining as he's comfortable with). The pediatrician asked what the seroquel was for & B calmly responded "it's a mood stabiliser". C says the look on the doctor's face was priceless, as he was clearly trying to wrap his head around this 8-year-old's ability to lucidly explain his complicated meds...

 

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