Atlantoaxial Instability and other Questions...

[lindy]

Hi.

I barely ever post here, since so far Jenna hasn't had many medical problems, but now she seems too...

I asked her pediatrician about the atlanto axial instability, and she gave me a perscription to get an xray. I told her that I thought the anesthesiologist (sp?) had her neck xrayed last year before Jenna's eat tube surgery and she told me to ask the ENT about it.

We went to the ENT last Wednesday and he looked in Jenna's files and turns out she did have the xray done and Jenna has significant ligamentous instability... And then it says CT scan recommended. That was a year ago and no one ever told me. So I need to talk to her doctor and get the CT scan done now. What takes place with that?

Also Jenna has been kinda congested and snoring at night. I told her ENT about it and he ordered a sleep study. What goes on during that? I tried searching for it on the internet but I couldn't find anything. I would rather hear what takes place from a Mom or Dad that knows than a medical website anyway.

I think that is all the questions I have right now. Jenna is doing really well besides these things. Summer break has started and I am already having a hard time keeping her entertained. She always needs something to do. Not the kind of kid that would sit in front of a tv all day! We have been having a lot of fun though!

[justinsmom]

Hi Lindy, for the sleep study the hardest part is trying to keep the kiddos from pulling off the electrodes , Justin was 2 when he has his and in the midst of the terrible 2's, the tech monitors breathing, heart, and brain activity during sleep. We also opted for Justin to sleep in a regular bed with dear ole dad rather than the crib. We had to be there around 9pm and by 6am. The time depends on when the child falls asleep and if they have enough data during that time.
As for the Atlantoaxial Instability I can't believe no one bothered to mention this after a year . Don't have any experience with that one Justins' x'rays have been fine so far but a some here have and I'm sure they will post up soon.

[rickismom]

It could easily be that the amount of instability is really not all that much, and they saw no sign for concern. Since there is nothing to do for AAI other than surgery, no one is in a big rush to do things. What is suggnificant is NOT only the size of the gap, but (even more than that), if you have any neurological signs of problems. Barring real severe cases, there really isn't much to do....

[Emilysmom]

Lindy~ I'm sorry I can't answer any of your questions regarding what happens with each test. I just wanted to share with you that we went through a lot of AAI scares when Emily was 3. We too were very shocked and scared because she had always been totally healthy.....we simply had the Xray because she turned 3. Our doctor read the results and immediately sent us to a pediatric neuro surgeon. He acted very scared that Emily would make one wrong move and would end up paralyzed from the neck down!! He told me so many horror stories, and was prepared to schedule her for surgery within that same week!!! I asked for a second opinion, and he gave me the name of another pediatric neurosurgeon and he assured me that he would trust this doctor to do her surgery too. When we got to the 2nd opinion doc, he was VERY opposed to any surgery......said we should repeat the Xrays in a year and make a decision then because the results of the initial Xray are often unreliable. A year later, Em's Xray was FINE!!! She has had a couple rechecks since then, and all of them have also been fine. I know how scary it is! Update us when you can.
Susan

[momofjordan]

Hi there. Jordan had his x-ray done about a month ago. It was kind of scary because his ped. called and said that he had (i can't remember the number) but _ mm separation.. She was calling a specialist and would let me know. The specialist called her back and said "Wow that is great for a 2 year old" so we will have it re-done at 3 just to be safe.
Also... Jordan and I go in for a sleep study on the 24th of this month. They check for sleep apnea, O2 levels while they are sleeping, they also check to see if they are falling into deep REM sleep that they need... Stuff like that. Good luck...
Rene