Thursday, January 26, 2006

B's "Toolkit"

Thanks to the energy input required to cope with B, I sometimes refer to him as "twins" (think Fred & George Weasley of Harry Potter fame- which would give B no end of delight, especially as they share birthdays :). It occurred to me today that "twins" is a good analogy for B & his OCD/Tourettes, as it sometimes feels as though B's OCD "thoughts" are another, very pushy member of the family. B developed the OCD symptoms right before his eighth birthday, nearly 2 years ago, and added the Tourettes diagnosis to his resume this past summer when his long-time perseverative behaviours transformed into full-fledged tics. At the moment, this combo requires a great deal of intervention & account for most of his difficulties at school & at home. Most of the OCD symptoms take the form of "thoughts" that are often triggered by specific things in his environment (for example, his left hand) that cause severe anxiety & limit what he can touch or do, or where he can go. Sometimes the anxiety revs him up into such a state that it's extremely difficult to calm him- we've nearly taken him to the hospital 3 times in the past year & a half but were finally able to find some way to help him calm down & go to sleep (this extreme anxiety always hits him at bedtime). When B is in a state of anxiety the Tourette's kicks-in & the tics sometimes look like he's having a seizure. B is on a combination of medications (seroquel, zoloft, & buspirin) which allow him to function well enough to go to school, but take constant fine-tuning as he grows, gains weight, & as his brain/body chemistry changes. The seroquel, which is a mood stabiliser & the main drug that helps B, predisposes him to diabetes, so he needs semi-annual fasting blood tests. It also has caused him to go from 50th percentile for weight to over 95th, puffing him up like the Michelin man. The zoloft, which is the drug that helps with the OCD anxiety, has been reported in the medical literature to cause an increase in suicidal thoughts in children, so we watch him carefully. The buspirin was recommended by B's psychiatrist when his anxiety started to get out of hand again last fall, & we were reluctant to switch B to clonipin (which has even more severe side effects than the seroquel). The busepirin seems to have helped some, but to be honest, I can't tell if it was really due to the anxiety letting-up on it's own or our adapting & coping better with B's anxiety, or a combination of the 2...In addition to monthly visits to Dr. B, the psychiatrist, B also sees his psychologist Dr. M at least monthly, & then C & I see him as often as needed, to help us find coping strategis so we can stay sane. Dr. M has been on the team since B was in kindergarten & is a wonderfully skilled, personable, & resourceful person. He has most recently been working with all of us on the behavioural/cognitive methods that can help B learn to control & eventually overcome the OCD.

When B went back to school after New Years he found that some of the OCD thought triggers at school that he'd overcome before the break were back in full force. He started tic-ing in the car on the way to school one day, in anticipation of these triggers, so I tried a new approach... I suggested that he think about learning a "special sense" that would help him tell the difference between OCD thoughts & his "real" thoughts. We discussed ways he could do this & he suggested asking someone he trusted to help him tell the difference. We compared some of his OCD thoughts, like the thought that makes him think the batteries in his talking Pikachu are going to catch fire, to reality, trying to figure out the chance that something like that could happen, taking toy safety standards into account, etc. He concluded that this fear was definitely an OCD thought & filed it for future reference. I also shared with him that I have had some difficulty with OCD over the years (on a sub-clinical level, I believe it to be a coping mechanism I developed for dealing with my childhood abuse). I told him that sometimes I have a thought when I leave the house that the door isn't locked & I have to go back & check. To stop this, I started wiggling the doorknob every time I leave the house to see if it's locked, so that if I get the thought, I can immediately answer it without going back to check. B & I shared some of these new strategies with Cherie, his consultant teacher, so that she could follow-through with them at school. Since then, B has regularly checked possible OCD thoughts with us &, so far, accepts when we confirm that they are OCD, so that he can move on & not get stuck with the thought. Today, after another difficult arrival at school, I introduced the idea of adding a new skill to his "toolkit" of coping strategies- that of developing laser-intensity (he loves lasers :) concentration so that he can distract himself from disturbing thoughts. He had taken refuge in the special ed. resource room & sat slumped in a chair, unable to even buckle his shoes, & was not terribly receptive to this idea. I swallowed my frustration & calmly reminded him that one of the advantages of having Aspergers was his ability to concentrate, & told him that I really though he could learn to do this. Cherie came in while I was talking & chimed in, mentioning that he barely tics when he's concentrating hard on his schoolwork. He remained non-committal, but was willing to be jollied into putting his shoes on & was in a pretty good state of mind by the time I left. When I came to pick him up at the end of the day, Cherie said that he'd had a good day. In the car on the way home from school B casually mentioned that he & Cherie had gotten online & researched Tourette's Syndrome. He said he wasn't sure if any of the information would be useful for his "toolkit", but he had learned that one of the characteristics of people with Tourette's is a good sense of humour, which cheered him up. Bless Cherie! It's such a wonderful thing to have the other significant adults in B's life echoing the positive messages that we're trying to get him to hear, plus empowering him to look for information he can use. B & I see Dr. M, his psychologist, tomorrow & I am looking forward to giving him the progress report that B is actively looking for strategies to help himself with the OCD. I know we have a long haul ahead of us, & sometimes it feels like we're barely keeping ahead of B's anxiety, but progress feels good, no matter what happens tomorrow!


At 7:37 PM, Blogger Mom to Mr. Handsome said...

Those are some great tools for your son! It sounds like you are working really hard to help your son cope with some difficult challenges. Keep up the great work.
Here's a cheer to his teacher for finding a positive admist a rough day!

Take care,

At 9:28 PM, Blogger Lisa/Jedi said...

Thanks so much, Kristin. We are so lucky to have such a great "village" to raise B in! :)

At 10:51 PM, Anonymous Anonymous said...

We have never been to this site, found it by Googling "seroquel positive experiences OCD tic" and was amazed to read you post. Out son is only 6 but seems sometimes on his way to a similar condition. Do you mind if we ask: What was B like at 4, 5 and 6?
Ours is adding different behaviours each week and month and it is only recently we are guessing at tourettes (with OCD, ADHD).
Great learnings from your post on positive messaging. IT's hard to stay positive and not get upset at him - but we so much want to do good by our son....
Thanks again.

At 5:37 PM, Blogger Lisa/Jedi said...

Hi Anonymous,
I'm glad you've found this helpful. I have posted some "history" posts really early on in this blog, which might give you some info on what Brendan was like when he was younger (check in the first few months of 2006). We were fortunate to have him evaluated by an exceptional pediatric neurologist when he was 6 & she generated a list of what she thought was going on with him, with Asperger's at the top of the list & the first to be addressed. Also on the list were Tourette's, OCD, & non-verbal learning disorder (so new that it barely had a name, back then). Although at the time we did not see day-to-day evidence of these, over the years they've shown up & needed to be addressed.

What I find interesting is that Brendan really didn't have many of the difficulties he faces now when he was much younger. His sensory issues were pretty minor, & the OCD & Tourettes didn't become difficult for him until he was 8 & 9 years old (respectively). He did have perseverative behaviours, some of which needed intervention, which is what sent us to the pediatric neurologist in the first place. We, also, struggle sometimes with ours & his frustrations, & we feel sad to see him in so much pain from the OCD. We have a wonderful psychologist on the team, & his school is great, so that helps enormously. Good luck with your family's journey!!


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