PS to my post

[Guest guest]

After we talk to the neuro surgeon, I will post any info of value especially

regarding timelines for xrays.

My knee jerk reaction is to have them done annually (whicj was the original

guideline)

All the publications that I have found & read since October do state xray should

be done prior to surgeries (ie ear tubes, toncilectomies, dental work, etc)

Because DJ's 1st xray showed an abnormality that warranted an MRI, no dental

work would be done & because he required sedation for the MRI, this had to be

done in the hospital because of the unknowns regarding

any craniovertebral instability.

To add to our mix, unfortunately he was seen by a dentist in August who put him

in some major head locks. A special needs dentist at that. Ahem.

Then we had the xray done for school special olympics in October which came back

abnormal.

ALL his other xrays in prior years were normal. DJ is 16 (17 in May).

In the meantime he had been scheduled for dental surgery at hospital. I am not

making this up, we were there for over 4 hours, he had been mickey finned & I

kept telling everyone I saw about the upcoming MRI & original abnormal xray. I

was finally heard & director of denistry & director of anesthesia met with us &

mutally agreed that the risk was too great to do the surgery until results of

upcoming MRI were seen!

OK??!! Just letting all know so you have some info & can advocate as needed or

if needed.

And the ONLY reason I knew about the need for annual xrays for craniovertebral

instability in DS is because I was teaching in those ancient days when the need

was first discovered.