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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.

Thursday, June 3, 2010

Thursday, June 3

Home from PT, he's making good progress. Walking back and forth across the room (wearing a belt for the person supporting him to hold onto). We were able to bring home the front wheel walker to practice at home, it's the best exercise we can possibly do to keep his legs strong, and the more he is upright the better. In my humble opinion. It's easy to forget that we are still not quite yet back to where he was during his "upswing", when I wrote those cursed words that jinxed us right back to super-wobble status.

In the car this morning, he told me a lovely little story about taking a header out of the wheelchair at the park yesterday while a friend was running and pushing. His biggest complaint about the incident was that his friend got in trouble. Can you imagine being the teacher? Hilarious.

All in all, things are encouraging. There's a big head game at play here, and it's not just his cerebellum. I'm thinking about asking for a few sessions with a counsellor so he can vent a little and express what must be complicated and intense emotions and fears.

Anyway, here's the letter I wrote to the dojo yesterday by way of explanation. Rita, you are so right about the "telephone" syndrome, I can only imagine the tales being told.


To our friends at USAFMA,

We want to thank you so very much for the opportunity to go and see the advance screening of the Karate Kid last night. What a great movie! It was good for Jimmy to see everyone again. It hadn’t really occurred to us that most of the kids had no idea why he stopped coming to Karate, and were surprised to see him in the wheelchair. I thought it might be helpful for you to have more information, which you can choose to share with anyone who is asking about Jimmy’s condition or prognosis.

We are working under the assumption that his diagnosis is Acute Cerebellar Ataxia.

From the National Ataxia Foundation:

"The word ataxia means without coordination. People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected. Ataxia may affect the fingers, hands, arms, legs, body, speech, and eye movements. The word ataxia is often used to describe a symptom of incoordination which can be associated with infections, injuries, other diseases, or degenerative changes in the central nervous system."

In Jimmy’s case, there is no clear cause for the onset of these symptoms, which is somewhat troubling. However, he has had every test in the book including a CT scan, MRI, Lumbar puncture, and exhaustive blood and urine testing and nothing has been found, which is VERY good news. They looked for tumors, strokes, nerve diseases, MS, and lots of other scary
stuff that I can’t pronounce. So, we assume that there was a viral infection at some point that triggered the Ataxia.

Ataxia usually goes away without any treatment within a few months. It is extremely rare that there are continuing or disabling symptoms. Jimmy's symptoms began on April 20, six weeks ago. He has had a few brief episodes of improvement, but has generally stayed about the same since he spent the night in the hospital on April 23.

Jimmy is under the care of a pediatric neurologist at Rady Children’s Hospital, and is undergoing Physical Therapy twice a week to keep his muscles strong and work on improving his balance. His legs work just fine, the area that is affected by Ataxia is his trunk, and when he stands or sits upright without support, he experiences what they call retropulsion, which looks like a sudden backwards movement from his trunk. As he tries to correct for this movement, he often lurches forward and because his sense of where his body is in space is impaired, and he falls. The wheelchair allows him to participate fully in school and most community activities, but what he really wants is to get back to karate!

That’s the condensed version! Please feel free to share this information as you see fit.

Jacquie and Bill Kennedy

Thanks for reading, and especially for commenting (hint, hint).
Better things.

8 comments:

  1. And, about the counseling idea... I think that's a great idea. We just finished up almost a year's worth of therapy with Alex for his anxiety issues and I am so glad we went. I was afraid at first of causing more trouble for him by taking him to see a therapist (worried that he might identify himself as abnormal and maybe that would compound the other problems), but once we got rolling I regretted not starting sooner. It helped him and it helped me (with the shrink reassuring us that we were indeed doing the right things as parents, or cueing us in on the fact that some of the behaviors that we found so alarming were in fact normal for his age and helping us better work with him on those issues). It was just a really positive experience for all of us and it did help him so very much.

    Plus, these days kids talk about going to the shrink in the same way they talk about going to the orthodontist. It has lost its negative stigma. Thank God.

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  2. hi Jacquie, I hope Jimmy's progress continues! our Julia has been on a long neurological/rheumatological journey herself, but thankfully she has been feeling well the past several weeks. Feel free to email me at hardimac@gmail.com
    Kara (McIntyre) Hardiman

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  3. I love that letter, Jacquie. I also love playing telephone.

    I really wish he could get back to ka-ra-te, too, especially if Sensei Willy is the instructor. Wheelchair karate?

    Ellie

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  4. Your letter is great, Jacquie. Glad to hear Jimmy's making good PT progress & using the walker. Hang in there! Love you, MB

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  5. I think counseling is a great idea. He's doing so well, but obviously must struggle with the whole shittiness of it. And the letter was very well written, J, as always. And Ellie, do you mean Dojo Willy? :)

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  6. Yes, excellent letter. As per.

    And I also concur about the counseling, especially if you can get it paid for somehow. I'm sure Jimmy would benefit. (In fact, I'm going to ask about it for Anneke when we meet with the neuro on the 14th.)

    And yahoo for the front-wheeled walker!

    beth

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  7. [One day at karate Autumn pointed to the quite handsome and alluring Sensei Willy and asked, "Is that the dojo?" Yes, Jacquie and I both replied, yes, that is the dojo.]

    Ellie

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