Re: atlanto-axial instability

[Guest guest]

Good going Marcia! Mothers instinct strikes again. Good luck with the next step and hope everything is fine with Sara.

Emma and Nicki are under the care of a Developmental Pediatrician who says she doesn't believe in neck xrays and doesn't trust the results. Basically what she is saying is to treat Emma and Nicki like they have the instability. We have an appt coming up so I will insist we get the xrays done. Afterall, the girls want to do some horseriding this summer and they won't allow kids with Ds unless they have a letter stating that their necks are fine.

CarolynMum to on, , Emma (Ds) and Nicki (Ds)www.geocities.com/nz_mom/sykesfamily.html

[Guest guest]

Thanks, Carolyn! I, too, hope Sara is just showing very mild instability and continues to stay that way! Hope your girls' necks are fine, as well, so they can get on those horses and ride. Sounds like fun.

Marcia

Mom to Sara (DS) and 6 and Lucas 10

[Guest guest]

We were going to start our son Mikey 2 (ds) this summer doing the

horseback program. We had the xrays taken, and they found that he

had a bifid dens, which they stated that his second vertebrae was

split into two. The recommendation we got was no horseback riding,

but for next summer, we are going to get a second opinion from a

pediatric neurologist. Sara, have you ever heard of this one.

Anne Mom to Jimmy 7, Danny 5, Mikey 2 (ds) and 2 weeks (ds)

[Guest guest]

Just my two cents....................I'm just wondering, Carolyn, why

your Ped doesn't believe in cervical spine X-rays? I'm an x-ray

technologist, so I can't figure that one? Maybe he/she means she can't

trust/rely on the Radiologists' reading/interpertaion of the films?

Gail

[Guest guest]

Karrie was dx'd with AAI when she was 5. She was x-rayed at 3, but dr. didn't

catch it until she was 5. She was on precautions (no jumping, tumbling, etc)

until she was 8. After being re-xrayed, it was discovered that she was no longer

in the critical stage. We don't even have to be seen by neurosurgeon unless she

has symptoms.

Sue mom to Kate 19 and Karrie 12 w/ds and mild autism

---- tjm64 <tammymccall@...> wrote:

> I am curious if any kids in the group have been diagnosed with AAI and what

treatment has been tried. Am trying to get an idea of how often this happens

and how urgently it is treated. Needless to say my daughter Hannah has been

diagnosed and they are discussing possible surgery. There really isn't alot

of info on it outside of basic precautions.

>

> Thanks,

> Tammy, mom to Hannah 8 ds, and Trystan 6

>

>

>

> ------------------------------------

>

> Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

[Guest guest]

Our girl was dx with it when around 3 years of age. We did not want to have

the surgery, because of the risks and the fact that surgery didn't look too

promising. We strictly followed all AAI precautions for years and somewhere

along the way, she moved out of the danger categoy into the " normal "

category in terms of separation between the vertebrate.

I would absolutely insist upon a second, if not third, opinion, and only

with honest to gosh peds ortho surgeons who really know their way around

AAI. No one else - it's too easy to screw up, and the literature is so

sketchy.

My very best wishes and prayers to you,

Eleanor

_____

From: [mailto: ] On Behalf

Of tjm64

Sent: Monday, March 23, 2009 6:08 PM

Subject: atlanto-axial instability

I am curious if any kids in the group have been diagnosed with AAI and what

treatment has been tried. Am trying to get an idea of how often this happens

and how urgently it is treated. Needless to say my daughter Hannah has been

diagnosed and they are discussing possible surgery. There really isn't alot

of info on it outside of basic precautions.

Thanks,

Tammy, mom to Hannah 8 ds, and Trystan 6