Anybody's child have scoliosis??

[Jimmysmom]

Hi

My son has had scoliosis from birth but they just now gave us a brace for him to wear when sitting up. Jimmy really has a time with the heat in the summer and we explained this to the drs. so their fix was to drill some extra holes in the vest for ventilation. I'm not convinced that this will help much and wanted to know if any other trach families had any advice.

Thanks

Anne, mom to Jimmy, ( 2 1/2) GBS, trach, vent dependent, g-tube

[Jimmysmom]

Hi Carrie and Stephanie, thanks for responding.

Jimmy's curve has remained at 40 degrees for a year and a half with no treatment. But as he gets bigger he is slumping more now when he is in his stroller. He has Guillian Barre Syndrome and is hypotonic which causes his trunk muscles to be very weak as well as leg and arm muscles the GBS also paralyzed his right diaphragm so that is the reason for the trach and the vent.

He is getting stronger in other areas of his body, within the past two weeks he has started using muscles that he hasn't used for two years. He now has head control when sitting up. So as of right now the spine itself is o.k its just he does not the muscle strength to keep it straight. So he will wear the vest when sitting to maybe help strengthen the muscles. He spends most of his time on the floor rolling from his back to his side. He is still unable to sit independently, crawl or stand. He does have a standing table and just recently a gait trainer.

Carrie- since your son only wears it three times a day, what does he wear underneath the vest. They gave us three really tight t-shirts but they make him so hot I hate to have him wear those everyday. He likes to get up and down a lot during the day, somedays that's all we get done it seems.

Thanks for your suggestions

Anne, mom to Jimmy ( 2 1/2) GBS, trach, vent dependent, g-tube

[Ann]

Stephanie,

Thanks for the explanation! I was so worried about whether my son would grow once he had a rod inserted. I think we are still a few years away from having to worry about it. He doesn't wear his body jacket like he should because he gets so stressed out in it. Right now he only wears it when he is in his stander and I'm trying to make him wear it all the time when he is in his wheelchair. http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/smile.gif

Thanks again
Ann