This year for 31 for (T)21 I am going to attempt to do an A-Z theme. The letters of the alphabet will have to do with Down syndrome, disability, or Kayla. I'm not sure how well I'll be able to pull this off because there are several letters I have no idea what topic to blog about - Z is one in particular that I have no idea what to blog about yet.
The first thing that came to mind for "A" were things like "awareness" "abilities" "acceptance" "advocacy" But I blogged about those before.
I thought about ADHD, but I've blogged about that before, too, and nothing much has changed.
The next thing I thought about that has to do with Down syndrome is Atlantoaxial Instability, or AAI.
AAI is on medical lists as something that people with Down syndrome have an increased risk of having, but it does not mean all people with Down syndrome will get AAI or that AAI only affects people with Down syndrome.
So what is AAI? Is is "...excessive movement between C1 and C2 as a result of either a bony or ligamentous abnormality..." It can happen because of congenital conditions like Down syndrome, Larsen syndrome, osteogenisis imperfecta, among others; but is also seen because of acute trauma or degenerative conditions.
When Kayla was born the medical guidelines where that kids with Down syndrome should get an x-ray to check for AAI around 3 years old. This is important especially if they are going to be playing sports. Actually the Special Olympics medical form has a box to check if the athlete has Down syndrome that they are cleared for an AAI. We tried that when she was 3, but kids at 3 years old don't exactly stay still enough for x-rays. They said it was clear, but with a few inconclusive spots because she wasn't still. We had the x-rays done again when we moved to SC, so when she was 7. Thankfully that also came back with a negative for any instability.
Guidelines were released stating that the x-rays didn't need to be done as a routine screening and if the person was asymptomatic. That seems to be controversial though because a child can have AAI without showing symptoms. (The guidelines also say the same about Celiac disease - that there isn't a reason to have the screening done if there aren't any symptoms. We found out Kayla has Celiac disease because of routine screening that we did every year, not because I was concerned about any symptoms.)
The National Down Syndrome Society has an article with more details on AAI and the controversy surrounding the guidelines as well as commentary by Dr Siegfried Pueschel.
If you have a child with Down syndrome it's important to have a discussion with their doctor about a course of action to take regarding the AAI x-rays and guidelines.
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