Thursday, June 06, 2013


Today is the last day of school.

It's also the day we started the process of weaning the boys off the Arbaclofen.

I know I was supposed to start sooner, but I didn't get the titration packet until Monday, and by then I thought, what's a couple more days?  This was the last week of school, and it didn't feel like a good time to take away the anxiety medication.
The bookmark I made this year for the teachers and aides.

Other parents, whose kids are in the process of coming off the Arbaclofen, are reporting that while their kids don't seem to be losing their verbal skills, the anxiety level is hitting the roof.

It makes me think about last weekend, when we were at a park and there were a couple of other kids there, and Zack was within reaching distance of those kids several times and didn't once need to reach out to pinch or bite.  He wasn't at ease, but he wasn't defensive, either.

I wonder if that's going to change, now.

I think about how AJ has been so excited to spend time outside in our neighborhood with the other kids.  He doesn't care what they are doing, or whether they even pay any attention to him.  He just wants to be around them.  It's so wonderful to see that.

I wonder if that will change.

I am remembering 20 months or so ago, in September of 2011, when we gave both the boys their very first dose of Arbaclofen, in the little exam room at Rush.  We were so excited.  We watched them with such anticipation.

Today I'm watching them with a very different kind of anticipation.

Oh, this is so not how I saw this research trial ending!  I thought it would be approved.  Because I'd heard nothing but amazing stories.  I thought that, come spring of 2014, it'll be approved and we'll receive a prescription for it, and then I'll probably have to fight with our insurance company, because they won't want to pay for a new medication.  I was ready for that fight, though.  I was ready to insist that while it was new, it wasn't new to Zack and AJ.  They would have been on it for two full years, by then.  I would have argued that one to the CEO, if necessary.  If they won't pay for this medication, why did I bother to enroll the boys in the trial?  Why did I work so hard to get it approved only to be denied access to it?  Where's the incentive for anyone to enroll in drug trials, if they are only going to be denied the drug once it's approved by the FDA?

I was ready for that.

I wasn't ready for the abrupt termination of the trial.

I don't KNOW that the progress the boys have made in the past couple of years has anything to do with Arbaclofen.  I don't know.  But I'm afraid of what I might see, now that we have to remove it from their systems.  I will provide updates.

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