Tuesday, June 13, 2006

Abilify update...

About a month ago B's psychiatrist recommended that we begin transitioning him from Seroquel to Abilify because it appeared that B was beginning to have some side effects from the Seroquel, which he has been on for about 2 years. He takes the Seroquel to help him cope with the OCD "thoughts", which are so intrusive that he has psychotic episodes from the anxiety. We do not like the idea or reality that our son needs neuroleptics & are very much aware of the potential, long-term effects, but B would not have a functional existence without the Seroquel. He would not be able to cope with school or any of the other growing & learning things that kids do (we recently reconfirmed this opinion with B's psychologist). As it stands, B is doing very well, considering his high level of anxiety even with the meds (he's also taking Zoloft). The side effects issue with the Seroquel is weight-gain & also that his triglyceride levels have been creeping up over time, which made his psychiatrist uneasy. When we saw her last month his most recent fasting blood test (from mid-April) showed his triglycerides to be over 300, so she asked us to repeat the test that week (mid-May) & strongly recommended beginning the transition to Abilify, which does not appear to have as much of a weight-gain or effect on cholesterol. We added 5 mg. Abilify on top of his regular Seroquel dose because he had been experiencing increased anxiety at the time. The immediate effect was to mess-up his sleeping routine by causing him to fall asleep earlier & then wake up earlier (which for B is not a good thing, since he rarely sleeps past 6:00 am as it is...). So, we reduced the Seroquel by 25 mg. 3 days after starting the Abilify, which took care of the problem. Over the next 4 weeks things were pretty stable, which was great, considering that it was the last weeks of school, with all of the attendant stress & transitions. As I had hoped, this was the first time since first grade that B did not try to hurt himself (by zapping himself with a paper clip in a wall socket) at school during the last few weeks, & that felt like a major victory.

Then just a week ago, B began having sleep disruptions again. He was waking up at 2:00 am & not being able to go back to sleep on his own. C would go in with him & try to get him back to sleep by just being with him (which usually works), sometimes successfully & sometimes not. The third morning this happened, B seemed to be having major leg spasms, & when B pressed his face into his dad's arm, C realised that B was having facial spasms, too. Thankfully, being a physician, C realised that the Abilify was causing these spasms & we discontinued it that morning. B slept through that night without any problem & the spasms have not made an appearance since. C called B's psychiatrist that day (last Friday) to let her know what was happening, but she didn't get the message until today which was our regularly scheduled appontment, anyway (today she told me that we should just ask the secretaries to page her in these situations, so now we know...).

Some good things (so far) have come from this situation... although I'm still feeling guilty as heck for B's having to deal with the spasms at all. We have not returned B to his previous Seroquel dose & he's been doing fine (it's been 5 days, which has usually been enough time to see any adverse changes), which means that this could be our first successful dose reduction ever- & we've tried at least twice in the past 2 years to reduce the dose. My thinking is that the increased time with Dr. M, B's psychologist, over the past 3 months has contributed to B's ability to handle more anxiety with less meds. He is much better at articulating what is causing the "thoughts" these days, which means that we can do our best to either modify his environment to minimise the triggers for the thoughts, or we can work on desensitisation. Either way, there's been a lot less head-banging & a lot more creative problem-solving, & it feels good. It also turns out that B's weight is down 2 lbs. from last month & his triglycerides have dropped to nearly a third of the worrisome figure from 2 months ago- hooray!! B was wondering if being more physically active would have had an effect, so we asked dad the doctor when he came home from work today & he said that increased physical activity would most certainly cause the numbers to be lower. This is wonderful reinforcement of B's recent efforts to be more active. He's had fencing lessons every week, plus has been learning to mow the lawn (we have a push-mower & postage-stamp-sized lawns, which are perfect for him :), plus has been swimming, & to top it off he's been digging a hole in the back yard & hauling out huge rocks with much sweat & excitement. :)

We are leaving for a family vacation to Washington, DC tomorrow, & B is psyched for the trip. Not specifically about going any place in particular (except the Spy Museum :), but just looking forward to going on vacation. I have a new Fruits Basket messenger bag for him, packed with goodies for the trip, like Pokemon activity books & plenty of gum. We found his spell-checker, which has never really been used as such, but has some great games like hangman on it, & are great for killing time in lines & restaurants. We have plenty of dvds & a new cigarette-lighter power converter for the laptop. And... drumroll please... I found the UK audio-book version of "Harry Potter & the Half Blood Prince", with Stephen Fry narrating, on Amazon.UK & purchased it to arrive in time for our trip. We love Stephen Fry & just can't wait to pop the first tape in tomorrow :) Makes me just about look forward to driving 8-ish hours... I hope to put up some of B's travel journal observations in the blog over the time we're in DC, so stay tuned.....

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