DS and Chiari malformation-and other ramblings

[kg91207]

Just wondering if anyone else has heard that people with DS are more likely to have Chiari malformations? Kaelyn's OT mentioned this week that they can, and since Kaelyn can start hippotherapy when she is two (YAY!!!) she will have to have x-rays beforehand to rule this out. Fortunately, I work with a woman who's daughter has Chiari, so she gave me more insight-like they actually need an MRI without contrast to diagnose this, x-rays won't pick it up, so now I know what to ask for from the pediatrician. And I want to get this done before the fiscal year runs out since I've met my out of pocket max with her procedure and all, so we won't have to pay a lot for it! Money is tight.

But I had complained recently about our OT and that I am frustrated that Kaelyn is not crawling or walking at 21 months, and this week she came out and still did nothing with her, except tell us about the hippotherapy, and set up a play date for her.

Speaking of the play date, I'm very excited! It's today at 2. It's with Olive, about a month older, and Adia, about 3 months younger. They both crawl and walk, so I'm hoping Kaelyn will model some of that! ha! Anyway, these two were on the cover with Kaelyn of this year's guild calendar, and we've gotten to know both their parents pretty well, so it will be fun! They both have been emailing me about doing a play date with Kaelyn. Olive has a twin brother, so he'll be there too.

Kaelyn continues to thrive since her procedure. She's gained 2 pounds since then, and eats like there's no tomorrow. Her follow up with her pediatrician here went well. She's picking up more sign language and tries very hard to say new words. She is kind of army crawling, but she stays on her butt with her legs straight out to the sides, and pulls herself along on the floor. ECI said that is strengthening her leg muscles, so they are not too concerned. I hope that's true.

Ok, I will quit rambling, just had to brag/share all the fun stuff about her! ;D

[Jackie]

ok..what IS this malformation?

Jackie

[kg91207]

to be honest I don't know the medical side of it, it's in the brain stem, and I think the skull can be smaller. I do know it can cause delays, sensory issues, migraine headaches, is affected by weather changes, people can have it and not have symptoms until later in life or after a car accident or something. It's very rare!

[laurasmom]

Here is a website about chiari.
www.conquerchiari.org/index.htm

I am going to go out on a limb here...........I think your OT might have confused Atlanto-Axial Instability (AAI) with Chiari Malformation. I can't find any information linking DS and Chiari, and when I read about Chiari, I immediately wondered if she had the 2 confused, somehow.

Just a thought.
Sharon

[Jackie]

I agree Laura...Brandi I think she might have gotten it wrong. I knew it sounded familiar and I think I have two friends who have had this surgery...their symptoms included severe unremitting headaches...and yes its very dangerous surgery.

Jackie

[Googsmom aka Jennifer]

I too thought of AAI. Ask the OT again and see if just maybe she has the names mixed up. All kids w/ Ds need tested around their third b-day and then again at school age or before sports activities.

[kg91207]

Knowing this dingy and weird OT, she may have gotten them confused. What test is it they need to have done? Chiari can have the severe unrelenting headaches too, are they pretty similar?

[laurasmom]

For AAI, which is very common in people with DS, a simple x-ray can diagnose it. Then, according to the results, your doctor will give recommendations about various activities, such as gymnastics, horseback riding, etc. Special Olympics used to have some good information at their website, and parents of kids with DS have a special area on the SO release form regarding AAI. There are severe cases of AAI that do require surgery.
This is a link to Dr. Leshin's article
www.ds-health.com/aai.htm

I don't consider them very similar. From what I have read, Chiari can be very dangerous, there is even a type that accompanies spina bifida. I did another search today, and can't find the connection between DS and Chiari. However there is a definite link between DS and AAI.

I really think your OT had them mixed up. If you are concerned, just talk to your doctor about this at your next visit. X-rays for AAI usually are done at around 3 years of age. At Dr. Leshin's site, you can also check out the health care guidelines.


Sharon

[kg91207]

Oh thank you so much guys! I'm glad I said something. I should have known not to trust her, I've had several issues about her and have complained and it hasn't changed, so I am going to start going up the chain of command!

[CC]

YES I am sure she meant (AAI)

Do you mean hippo-therapy with horse back riding?

In my area they don't do the X-ray for AAI till one is at least 3 years old and honestly they recommend one be at least 3 years old to start the horse back riding. Why I have no idea maybe cause thats when they do the X-ray. Chris has actually had this X-ray done 3 times now but he is 16. I know Special Olympics you have to have had the X-ray done also.

Honestly in all of Christopher's 16 years I have never heard of Chiari malformations

So how did the play date go?

CC~

[kg91207]

Yup, she said she would "qualify" for hippotherapy at 2. Maybe she was wrong about that also! I have a friend who is a speech therapist and does some hippotherapy, maybe I will ask her.

The play date went great!! She did throw a toy she was holding and hit Olive right in the head! I felt so bad. But she didn't mean to hit her, she just likes to throw her toys! She was really shy at first, but eventually I was able to sit on the other side of the room. I think it's just a coincidence, but since the play date she has picked up several new things-signs, words, and can scoot herself all the way across the living room!

[Jackie]

I could be wrong but isnt the Chiari malformation what Denise...Stevies mom had surgery for before her death?

Jackie

[Jackie]

ok...thought I was right...got this email from my friend who had the surgery because of headaches worse than migraines and almost constant.

Yes..chiari was wht I had corrected..decompressive laminectomy and craniotomy done by dr. Cone

I am sure this is not what you are dealing with ...better correct that OT...

[kg91207]

Yeah, well, today when I brought it up, it was like "yeah yeah whatever" and she went into all this detail about it. I wanted to say, right, but you need to tell me the correct things!