United Brachial Plexus Network, Inc.

Every once in a while I feel like I should be paying more attention to my dd's injury.

I am a planner and a bit of a controller so it's really hard for me to leave this!!

My dd is 16 months old and has not had surgery.

Her right shoulder and elbow were completly paralized until she was 5 months old.

She has weak fingers and wrist (they've been pretty consistent) and can lift her arm up to chin-level now.

She falls badly because her reflexes are slow and her arm is weak.

She has almost no abduction or external rotation.

She has a 20 degree elbow contracture.

Does anyone have experience with a situation similar to this? I would LOVE to know how it is working out for you.

THANKS!
Bonnie

Frequent lurker, infrequent poster!

hey there Bonnie, I emailed you

Please do not take offense, but I am just curious to know why you are not having your child evaluated for surgery. I am not a surgeon; however, it seems to me with that limited return, he/she could probably benefit from the tendon transfer/muscle release. My daughter could only reach chest height before her second surgery and now can get her arm above her head.

Hello, I don't see where she said she had not gotten her dd evaluated for surgery. Just that her dd had not had surgery. The fact that she hasn't had surgery leading to the assumption that she hasn't been evaluated is a fairly disturbing insight into the mentality of this board (no matter how enlightened we seem to have become recently) Maybe she was evaluated by a less aggressive doctor who did not feel the need to persue surgery. maybe she was evaluated, but her parents did not feel comfortable persuing this particular route. or maybe the parents haven't persued a surgical evaluation because they are aware already that this would not be a choice they would make for thier kids in their situation. Honestly I think the tendancy to assume everyone wants their kids to get as much gain as possible regardless of the method or risks is pretty frusterating. While it may be the goal of many parents with this issue, it does not make anyone less than if their goals for thier kids lie elsewhere.

Bonnie Your dd sounds very similar to my ds at 16 months. We are not proponets of surgery for our children and have not had our ds evaluated (someone call CPS ;o)He is 3 now and is slowly but steadily making gains still. He now has protective reflexes, no elbow contracture, though he does have a slight internal rotation contracture. I was told by 2 neurologists that this type of injury platues after 2 years and we should not expect to see much more gain. However he has continued to gain even past his 3rd birthday. If you would like to know any specifics of his treatments, gains, or discuss anything else feel free let me know and I can email you. I am not sure, but I think the email I am registered under here is my old one. Need to check that I guess.
Pam