Monday, October 13, 2014
Update on Luke
School continues to go well for Luke. He's got regular morning and afternoon bus drivers now, which is nice. At the beginning of the year, he had lots of different drivers until they got the routes figured out and assigned.
At his appointment at the MIND Institute last month, it was discovered that the genetic test his neurologist ordered didn't get put into the system correctly, so the results we thought we were waiting on never even got tested for. I have to wonder what they did with the blood they took from him...
We're now waiting for insurance to authorize the genetic test. 16 months in, and sometimes I feel like we're no closer to an answer to the "What's wrong with him?" we get asked whenever we take him out. I haven't yet developed a comfortable answer to that question. I usually admit we don't really know and end up launching into a big old explanation. But I feel that taking the "easy" route and throwing down the autism card isn't really accurate, either. Yes, he meets the criteria for an autism diagnosis, but we don't know what's causing his symptoms. If I say, "He's autistic," people make assumptions based on the autistic person or people that they know, and those assumptions don't line up with Luke's issues.
Like the time I was holding him while he was throwing a fit, and someone told me, "He wants to get down and run around." I don't think smoke came out my ears, but if there's a less helpful thing to say, I haven't heard it yet. I would love to have him "get down and run around," believe me! But if I put him down, he's going to start slamming his head on the floor, and then you'll really look at me funny.
We finally started Luke on anti-seizure medication. When we first noticed them, we had to really wait and watch to see one. But they've gotten more and more frequent in the last few months. His school called, concerned, because he'd had 17 in a row one day, and they wanted to know if that was normal. 17 seizures (during a 2 hour class) is not normal for anyone, but it can be typical for Luke these days. We decided he can't possibly be learning with the constant electrical storm going on in his head, so we're easing him into medication. We started a week ago, and today we up the bedtime dose. Next week, we'll up the morning dose, too. We're still seeing seizures at this point, but I'm hopeful that this, or one of the other drug options, will help us manage those.
Paul took Luke in for another MRI Friday. It's been over a year since his last one, and the neurologist wants to see what's changed in there. I'm anxious to hear, too. This should give us some indication if Luke's is a static condition, or if something is deteriorating.
Paul said he did well coming out of anesthesia. Next week, he sees Genetics, and they may have additional tests that they want to run when we do the bloodwork for the genetic test that UCSF recommended in February.
The following week, Luke sees his Primary Care doctor. Who is leaving the practice. So we'll have to choose a new one. I'm hoping she'll sign the paperwork for a handicap placard for Luke, since his neurologist wouldn't. When we're out with the girls, we can use their placards, but Luke doesn't have his own yet, even though he's the one with the wheelchair, so for appointments where it's just him, a placard would be helpful. Had I known we'd be eligible for 3 of them someday, I would have just gotten handicapped plates on the van in 2010 when I was given the choice with Hannah.
Still trying to get the spinal tap and muscle biopsy scheduled. Hoping to have those done by the end of the year.
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