AA1/ cervical Gap Help Just Told

September 24, 2008

Just went through the cervical xray screening when the radiologist

stopped after one picture in the neutral postion..thinking he was not

wanting to give her the time for the full three xrays... " No more

pictures, I need to research and study this more. " I was ready to

pounce thinking this was another doctor who was pulling the

prejudice " down syndrome kids card " . I pushed:wait a minute she can

look up and down. WHat is the problem? She is a very capable child!

Finally he told me he already found something in the xray that he is

concerned with and is uncomfortable even asking her to look up.

Needless to say, the world fell out from under my feet.

Tessa is a very bright ACTIVE 4yr who is in gymnastics, playing soccer,

in preschool, strong willed and totally keeping up with her peers. She

is taking speech for some articulation delays. The only area we watch

carefully is low muscle tone and loose ligaments(being super

flexible!).

My family doctor called to say she has a 4mm gap between her c1

vertabre and that is not normal. Infact, this is very VERY dangerous

and !!!!!! restrictions. You can imagine.... She doesn't know who to

send me to since this is all new to her. So I said downs clinic who

deals with pediatric cervical problems at the University Hosiptal in

Michigan. Now I am in a waiting pattern worried and going out of my

mind. I sit searching on the web only to scare myself even more.

I looked over the old messages here on the AA1 screenings and websites

reccommended in the past. THis is a scary prognosis. The future of the

gap widening in most sitations is disheartening, narrowing in a few? I

was looking for some guidance, direction, someone out there who is

going through this now, maybe some sanity too???

What type of doctor am I looking for? Speciality in Downs or

Cervical/neurology?

Do you push for surgery- fusion?

How do I even keep a very active child who sees her brothers and

sisters in sports- away from that lifestyle?

HOw do I stop worrying everytime she looks up at her 6ft 3in dad?

OR Stop looking in at her sleeping in the badly neck bent postion in

the middle of the night and not worry about spinal cord compression?

Okay, so you have a gap, fix it or not? why not fix it?

Has anyone had the surgery????

Thanks for hearing me out!

Totally A Wreak

Antoinette

Recommended Posts