I have a 13 year old son with down syndrome and I could really use anyones help, please. My son hurt himself about 2 years ago. He broke his neck and was rushed to the nearest hospital where they did a rush operation to fuse his upper neck. His neck healed fine and is still this very happy and smiley little boy.
The problem is, that he has stopped walking. From the moment we left the hospital 2 years ago, we have taken all the steps recommended by the Dr. We did the physical therapy, nerve testing and everything. We tried bringing him to different Dr.'s but the issue with this is most Dr..'s find it hard to figure what is wrong. Partly, because he does not talk at all and cannot tell you where his pain is.
I feel most Dr.'s are not real familiar working with down syndrome children. We live near nyc, about 25 min away. I mention nyc because I thought maybe the best help might be there, but if nj or anywhere else happens to be the best choice...Please let me know.
I want to thank you so much for taking the time and hopefully helping out. If this post is in the wrong forum, please let me know the correct place, I was not sure where to post.
I'm sorry I don't know any place for you to go.He does not talk at all,not even to you? I would tell you that you should try to get him to show you where it hurts so you have an idea.And if it doesn't hurt give him an incentive to walk again.Sorry if I could not help. : ) good luck!~
thanks for responding so soon. Would it be better to post this in a different area? As for him talking...When he was a baby, started saying momma and dadda, but when he started having seizure it effected his speech. He moans and screams but does not say words at all.
There is no way he is going to point out where the pain is. We have tried using food as a way to make him do things and that doesn't even work...And he loves food more then anything...Really anything.
Its not so much as to finding the pain but its to finding a Dr. That works with ds children and is a neurosurgeon. He already had the fusion in his neck and we want to find a really good Dr. To look at his neck again and make sure if its ok...We are not sure if he cant walk because of the operation or if he is choosing not to walk.
We love him so much and want him to run around again...But is becoming so frustrating and we don't know where else to turn.