United Brachial Plexus Network, Inc.

I am looking to find parents who's children were evaluated and did not qualify for surgery. What was the reasons they did not qualify? What compensations do they have? CW can you speak to your child's experience as she is 9 and has not had surgery. My daughter is 21 months and both TCH and BCH say no surgery so far but she still has her elbow out and winging. I am wondering as she gets older what things to watch for. Also anyone who's child qualified later in life or lost function and then had surgery would be of interest. I used to think with enough therapy she would get everything back or need surgery now I am realizing she may not get either. I am grateful for all she had but worry so about the future. Thanks!

Hi Carole, I just checked the board and I will respond as soon as I can. Tonight is movie night so I have to go right now - just wanted you to know that I saw your post and will reply soon. Christy

Carole.....I have a son, Kyle who will be 4 yrs. old in Dec. He was evaluated at 21 mths and 28 mths by TCH. Both times he did not qualify for surgery. He had made a remarkable and steady progress up until about the age of 3 yrs. Then he hit a platue and did start to lose some function. Actually he started to develope a contracture in his shoulder which is hindering his range. He has winging real bad (especially when he supinates) and lacks external rotation. He recently had x-rays done which showed he has sublaxation in his shoulder joint. His doctor has advised we look into the mod quad surgery at TCH. We are waiting to hear back from TCH after they evaluate his video. It looks like we may be facing surgery, even though Kyle had always shown such great recovery. You never know when or how this injury will effect them longterm. We thought Kyle was doing so good. He functions really well, most people still cannot tell he has anything wrong with his arm. But still we may be facing surgery. The best thing I can tell you is to make sure your child is being evaluated by a BPI specialist. You can send a video to TCH and they will evaluate it and give you their opinions. Hope this helps.
Karrie

karrie- thanks we are in video contact with TCH and have seen them in person as well as Dr. waters. I really was just looking into that crystal ball LOL