Monday, October 27, 2008

No Riluzole Miracle For Jonah

It's official: Jonah's Riluzole trial is over. The new, $13/pill drug that so drastically transformed two other patients on the unit had virtually no affect on Jonah's lingering irritability and SIB (self-injurious behavior; Jonah often bites his hand when he's agitated).

It's pretty disappointing news. It took half a bag of chocolate chips and an afternoon of mindlessly trolling the internet before I felt like talking to anyone again.

To be fair, Jonah was not in the same kind of desperate predicament those other children were in when they were prescribed Riluzole. Jonah's behavior, since he was placed on lithium shortly after his admission, has been pretty good - much, much improved over how he was before he left home.

But Jonah's doctor feels she can do better.

Which means another new drug, another trial - another few weeks, at the very least, until Jonah can come home. And it's hard to get excited about the new drug. Instead of something cutting edge, something experimental, Jonah's doctor is going old school, prescribing a tricyclic, which is a family of anti-depressants developed in the 1950s whose popularity with doctors has been eclipsed by the development of SSRIs.

On a more positive note, Andy and I had an amazing visit with Jonah this weekend. It was just us and him, no other kids, and he loved having our undivided attention. We went to Target, as he's been asking to do the last few weeks, and stocked up on markers. We had dinner at Chili's, where he was perfectly well behaved. (I can say with absolute certainty I would much rather take Jonah to a sit-down restaurant than I would Aaron or (especially) Gretchen.) We even got his hair cut, without a single protest - although, historically, haircuts have often required martial-type headlocks from Andy in order to get through.

So, our weekly treks down to Baltimore will continue. I have to say, I am so weary of making the trip. It didn't bother me that much for the first, oh, say, eight months of Jonah's admission. But all of a sudden, I started hating it. I can't wait to be done spending four hours in the car every Saturday, splitting up the family for the day (or listening to the twins scream in the car, which we do about a third of the time), feeling more exhausted on Monday morning than I did on Friday night.

But I guess I'd rather Jonah spend a few more weeks in the hospital, if it enables his doctor to find the perfect pharmaceutical cocktail. Because this is something I never want to go through again.

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