Public service post re DS & Atlantoaxial Instability

[Guest guest]

Hi all,

It has been months since I posted & hope all are well with multiple heartsmiles

zapping your lives.

This will be a short post (shock!)

When I became DJ's mama, the guideline was for annual xray to check for

Atlantoaxial Instability. We did this faithfully from 1997 until 2008. Then

the guidelines changed to every 3 years.

I just got off the phone with our ped who called with the results of MRI done

12/30. A sedated MRI in the hospital because of abnormal findings on original

Atlantoaxial Instability xray.

I am now awaiting a callback from the director of neurosurgery to schedule an

appt asap (per ped orders)

I am posting this to remind everyone to have an annual xray done.

The issue of craniovertebral instability in Down's syndrome patients is a very

controversial topic. Multiple studies and editorials have been written over the

last two decades and much of the information is conflicting and confusing.

For conflicting & confusing & helpful info go here:

http://www.riverbendds.org/index.htm?page=aaiab.html

For IMPORTANT info on anesthesia, down syndrome & Atlantoaxial Instability go

here:

http://www.ndss.org/index.php?option=com_content & view=article & id=264%3Aanesthesi\

a-and-down-syndrome & catid=60%3Aassociated-conditions & Itemid=88 & limitstart=1

As a parent & an advocate, I urge all to have an annual xray done for life. DJ

will be 17 at the end of May. All his xrays prior to this one (? in the 2 gap

years)were normal.

Let others with DS know. Please.

Love & hugs from Kris who is freaking out