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He wobbles, but he doesn't fall down. Mostly.
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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.
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I understand how disappointing this must be, and cannot imagine how you are dealing with it so well.
ReplyDeleteI did a little research on this today, and read a few articles in the medical journals about ACA. The good news is just what you have said - study after study finds that the vast majority of cases resolve on their own without treatment. The bad news you also already know - the road to recovery is non-linear, and while PT can help, mostly you have to endure an excruciating wait while he recovers!
Hang in there Jacquie, and don't hesitate to call on your Manchester community for help!
Drew
Says it all, dude.
ReplyDeletexxEllie