July 12th, 2009

Family May 2012

More Than Meets The Eye



J has been doing pretty well on the Clonidine patch/Daytrana patch combination for the past couple months.  It's not perfect, and the mornings and evenings are pretty atrocious, but at least he can function during the day at school or camp and we know he's safe.  But the problem with it was that even without the Daytrana, J's anxiety levels are really debilitating, and the Daytrana is especially bad about heightening his natural propensity for anxiety of any kind.  For example, he has such a severe phobia of bugs that he got to a point that he literally could not walk out of the house at times, could not go to sleep in his room by himself, and could not be left alone in his room, for fear of being over taken by bugs, real or imagined.  (this is but one example).

We have, in the past, tried one medication to help control the anxiety - Remeron, which has the advantage of helping with insomnia and also tends to work as an appetite stimulant - which J needs (his appetite is seriously suppressed on the Daytrana, so we work hard to get calories in him, and, in fact, have started even supplementing his calories with calorie boosters).  Unfortunately, the Remeron backfired and the side effects were awful, so it only lasted a couple days before we had to nix that trial.  That was a few months ago.

But we realized we needed to try something new, because we couldn't be moving into summer with a child who was petrified to go outside - particularly with summer camp starting.  And so Ye Olde Developmental Pediatrician recommended starting him on an SSRI, which might have the added benefit of helping him with mood regulation - another much needed area for attention (but secondary to the ADHD and anxiety, so we just hadn't gotten there yet).  I was skeptical that we would be successful with the SSRI solely on the basis of getting him to take it.  After all, we've got kind of a sketchy history of getting J to take medicine for more than a couple weeks at a time.

To my great delight and surprise, despite the fact that the medicine tastes revolting, we have successfully disguised it in about 3 ounces of CocaCola (aka Nectar of the gods) for about three weeks now, without any complaint from J (he knows he's taking medicine - we're not tricking him about that - but he has consistently told us that he doesn't taste it in the coke).  We started at laughably tiny doses and have gone up in teeney tiny increments (and are still below a normal starting dose for children), but it has, so far, been a real miracle for him.  His anxiety level has gone down significantly and he is completely functional now.  The only remaining anxiety he seems to have on a regular basis is social anxiety based around camp/making friends/etc and we're working with him on that. 

Another interesting side effect is that he's been more willing to take oral medication in general - a day or two after starting the SSRI, he started getting some allergy symptoms and was having difficulty sleeping and Seth suggested to him that he could take some Claritin.  We were both laughing inside knowing full-well that J would never take him up on such an offer, but J said, "Okay, I'll take the medicine."  After we picked ourselves up off the floor from our shock, Seth gave J the Claritin (which he took without complaint) and J went back to bed.  Twice, we've even been able to give J a short-acting ADHD medication when we've needed to extend the life of his ADHD medication into the evening hours - something which we never thought would be possible at this point in time.  Ye Olde Develpmental Pediatrician's hope is that once we get some stability on the SSRI dosing (which should be any day now), we can start working on transitioning J to taking a short acting ADHD medicine each morning to help make the mornings much less difficult for all involved.  I'm hoping this isn't too optimistic a goal.

But we do walk a fine line with the SSRI.  The number one side effect with the kids who take it is hyperactivity/overactivation of ADHD symptoms.  Which is funny, since the ADHD medication can overactivate anxiety symptoms.  It's like putting a dehumidifier and a humidfier in the same room and letting them duke it out.  And people wonder why I say it feels, sometimes, like I'm walking a tightrope - always an impossible balancing act.  For the moment, we seem to have found a reasonable balance, but the balance, of course, gets thrown off as he grows, and we have to continually adjust. 

None of this is perfect, or easy, but I must say - it is so nice to see something working for once.  It makes it so much easier to want to get through each day.  Really. 

Interestingly, J is delighted to be taking oral medication again for one reason - because we're back to his reward chart for taking medication.  He gets X's on his chart for taking his medication.  Each X is worth $0.15 and when he fills up his chart, he gets to go purchase something with his money.   Yesterday we helped him out a bit since he's been so great about taking it and we got him a new Transformer (a metal one in hopes that it won't fall apart as quickly as his plastic ones tend to do).  AND as a special treat from us to encourage him to keep up the good work... we got him the Transformers movie, which he's been begging to see. 

He is in little boy heaven.

What he doesn't know is that we have Star Wars waiting in reserve for him, for the next time I need a motivational treat for him.  He's been begging to see that, too.  :)