18 month old with congenital scoliosis

[shinesun7981]

Hello My name is Jill. I have a little girl that is 18 months that just brought home her very first Milwaukee brace for scoliosis. No other health concerns other then sever constipation. had MRI and ct-scan. She is going to be wearing the brace for 99months and then will undergo surgery. I really need any information on infant scoliosis and if there is anything I can do to make it easier for her. I am afraid of putting her in her car seat. IS there a special car seat you can buy? What about high chairs and strollers? Is there anything I should sign her up for to help us financially? Please I would really like any input you can give me. The doctor told me there is no pain related with the brace put I can't see how..did yours have pain in the beginning? :confused:

[Carmell]

Hi Jill,

I received your email. Look for a note from me soon. Take care and please know you are NOT alone! Best wishes to you!

[Mary Lou]

Hi Jill,

Have you considered taking your daughter to a Shriner's Hospital? All of the care you receive there is free and I'm pretty sure that would include the cost of her braces.


Good luck,
Mary Lou

[Jodi]

Our almost-three year old daughter, Isabelle, was diagnosed in-utero with VACTERL. In addition to a hemivertebrae, she also has a slight imperforate anus (her anus is slightly off-center from the sphincter muscle), dextrocardia (her heart is in the right cavity) and unilateral agenesis (she has only her left kidney). So far, the only anomaly that will require surgery is the hemivertebrae.

She has seen the specialist every six months since birth to track the curvature (as of last week it was 45 degrees), and we were always aware that surgery was the only option to permanently and definately stop the curvature, but the doctor (we take her to AI DuPont in Wilmington, DE) wanted her to be big enough to tolerate anesthesia a little better. We will be meeting with the him after the holidays so that he can walk us through the sugery and discuss what types of correction they will attempt in addition to the excision. He has asked us to have an MRI done before the office consultation to see what's going on internally (which requires sedation), and I've read a few on-line studies that say a 3D CT (any experience with this?) reflects more accurately the findings at sugery vs. plain films.

http://www.spineuniverse.com/displayarticle.php/article2423.html

I'm as okay as I can be with the surgery (I know that children heal much faster than adults and I know I want her to have as normal a life as possible), but I'm really worried about the recovery. Six months in a cast and another six months in a brace is a long time for a very active child. Also, what about pain management? And should we try to explain to her what they are going to do, or will that scare her?

Also, her doctors (two will operate) have only done a combined total of three of this surgery. Where can I get more information on who's done the most of these and who's considered "the best"? We are very happy with AI DuPont and have every confidence in the doctors, but the more knowledge we can get the better we'll feel.

Please feel free to email me at jodimcelwee@gmail.com if you can tell me what to expect during her recovery, or any other advice you may have.

[Carmell]

Jodi - look for an email from me! boulderfam@hotmail.com

My best,