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He wobbles, but he doesn't fall down. Mostly.
info
At age 11 and out of the blue, Jimmy lost his balance. His diagnosis is Acute Cerebellar Ataxia. He is currently wheelchair bound and we are working hard to find whatever it is that we need to fix. Here's where I'll try to keep everyone in the loop about what's going on.
UPDATED: You might be wondering...
What's his diagnosis?
Acute Cerebellar Ataxia
Have you tested him for this, that, and the other thing?
Yes, yes, and more yes. Especially the other thing. He's had a head CT, a brain and spine MRI, a lumbar puncture, and many rounds of blood and urine. Nothing "remarkable" has been found, some of the tests will take several more weeks to come back. The consistently negative results lend weight to the general ACA diagnosis.
Is he dizzy?
No, he does not have the sensation of the room moving around him. His issue is lack of balance and coordinated movement. He feels fine when he sits down, but when he stands up, he lurches backwards and will fall over unless you catch him.
Is he in school?
Yes! He missed more than two weeks, but we kept up with all of his work and the school has made accommodations so he can be as independent and self-sufficient as possible. It is very, very good for him to be out among the tribe of like minded (weird) 5th graders.
What about work?
My employer has been incredibly supportive and I was able to work from home and on evenings/weekends when Jimmy was out of school. I've been at the same job for 7 million years, so the place is pretty capable of running itself with my amazing colleagues pitching in like stormtroopers. I'm now at work while he's in school, and able to get him to all of his appointments. We're not doing after school care for now, we'll see how it goes.
More questions??? Ask in the comments and I'll answer as best I can in this section.
Acute Cerebellar Ataxia
Have you tested him for this, that, and the other thing?
Yes, yes, and more yes. Especially the other thing. He's had a head CT, a brain and spine MRI, a lumbar puncture, and many rounds of blood and urine. Nothing "remarkable" has been found, some of the tests will take several more weeks to come back. The consistently negative results lend weight to the general ACA diagnosis.
Is he dizzy?
No, he does not have the sensation of the room moving around him. His issue is lack of balance and coordinated movement. He feels fine when he sits down, but when he stands up, he lurches backwards and will fall over unless you catch him.
Is he in school?
Yes! He missed more than two weeks, but we kept up with all of his work and the school has made accommodations so he can be as independent and self-sufficient as possible. It is very, very good for him to be out among the tribe of like minded (weird) 5th graders.
What about work?
My employer has been incredibly supportive and I was able to work from home and on evenings/weekends when Jimmy was out of school. I've been at the same job for 7 million years, so the place is pretty capable of running itself with my amazing colleagues pitching in like stormtroopers. I'm now at work while he's in school, and able to get him to all of his appointments. We're not doing after school care for now, we'll see how it goes.
More questions??? Ask in the comments and I'll answer as best I can in this section.
That is a beautiful thing. Fit for framing, natch.
ReplyDeleteEllie
Incredible! Just like that he's all better? So amazing.
ReplyDelete