Monday, February 6, 2012

Atlantoaxial instability {advice needed!!}

Needing advice T21 friends...just got notice from Children's Hospital that Logan is due for his yearly neck x-ray. We checked for Atlantoaxial instability when Logan was about 3 years old. At that time we had a scare that he had it due to a misread x-ray, but through further testing it was found that he did not have it. BUT Children's recommended that he have an x-ray repeated every year because "kids with DS can develop the condition later". I think they said they wanted to repeat until he was around 10 or 12?? I can't remember now. Anyway! I think this yearly x-ray is unnecessary! Anyone else hear of this new recommendation?? We were also told that he should NOT do anything that puts pressure on his neck! NEVER! Like forward rolls (summer saults). I think this is a little extreme! He doesn't have AAI and he LOVES gymnastics! Is this neurosurgeon just being too extreme??! He says this is the new recommendation for all kids with DS!

5 comments:

RK said...

From the most recent guidelines released in July 2011....

Plain radiographs do not predict well which children are at increased risk of developing spine problems, and normal radiographs do not provide assurance that a child will not develop spine problems later. For these reasons, routine radiologic evaluation of the cervical spine in asymptomatic children is not recommended. Current evidence does not support performing routine screening radiographs for assessment of potential atlantoaxial instability in asymptomatic children.

Here's the whole thing... http://pediatrics.aappublications.org/content/early/2011/07/21/peds.2011-1605.full.pdf

And an article touching on the highlights... http://www.medscape.com/viewarticle/747147

Hope that helps with the facts on the guidelines.

But from an opinion standpoint, IF my insurance covered it and IF the doctor recommended a yearly x-ray and IF he was active in things like gymnastics that can be dangerous if things were to change without notice, I would probably go ahead with the yearly xray anyway. That's just me... But in our case, Braska's not doing any high-neck-impact activities and had a clear x-ray at 3, so we're not repeating until just before kindergarten this fall, and maybe again in a few years after that unless symptoms arise or she decides to do something more physically involved for her neck specifically.

Just my 2 cents! :o)

Jill said...

I don't have any advice as you've been walking this road much longer than me, but someone had linked to this post which I thought of after reading your post here.
http://www.myspecialks.com/2011/08/down-syndrome-and-aaiaoi-and-aap.html

Jen said...

My son had an aai x-ray at 3, per my request. However, our pediatrician (chief of peds @ Marshfield Clinic) said the recommendation was recently loosened and that he wouldn't need another for at 3 years and only if he wanted to get involved in contact sports or gymnastics. With 4 older siblings every day is filled with gymnastics. Anyway, our pediatrician also said that the x-ray doesn't always tell the whole story. I tend to be a less is more kinda mom and so if the doc gives me the option of doing nothing I will usually go that route.

Anca said...

Hi Melanie,

we are in Canada so the "x-ray standards" might not be the same but we too went trough the AAI testing last summer when our Alexa was 3 and a half. We ended up seeing a neurosurgeon at the Sick Kids hospital in Toronto. He did not see any symptoms (made her walk, tip toes, bend, jump). The x-ray showed that her two vertebrae are a bit loose but he said that it is common in kids with DS and she should continue doing what she loves doing with no restrictions. He recommended another x-ray only in 3 years.

http://hopelovejoyandalittleextra.blogspot.com/2011/08/atlantoaxial-stability.html

Take care,

Anca

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