United Brachial Plexus Network, Inc.

Three weeks ago we posted a messsage about our 11 yr. old son, Will, being injured in a rock wall accident. It has been a long 3 weeks, but thanks to this message board and Francine's website, we have made the decision to take our son to TCH - have an appointment for June 3rd. Our local doctors in Upstate New York don't seem to have a clue how to treat this injury - we've received an amazing array of medical advice ranging from slightly helpful to totally ridiculous. It seemed to us that the best choice was to take him to a speicalist as soon as we could. We wouldn't have done that without the knowledge we have gained from all of you. Just wanted to say thanks! Will is doing well, by the way. His arm is mostly paralyzed - he can move his pinkie and thumb. He trys to do everything for himself and refuses to slow down. He has pain on and off, but it seems to be bearable. He's looking forward to going to Texas - wants to see the Space Center in Houston! 11 is a great age!

Hi again, glad to hear your son's fingers are moving a bit, at just 3 weeks into injury that's a great sign, hopefully he won't need surgery. I did find a good site from the Beth Israel hospital in NY, did you check them out? The info on the site is handy whether you go there or not here's a link http://www.nyneurosurgery.org/cfr/brachial/plexus.htm
anyway, keep us posted with your son's progress, it's so nice to see the kids do well

Thanks for your good wishes, Jenny. We did check out specialists in the Northeast, including Beth Isreal. Just felt better about TCH, especially their experience treating children with tbpi. Seems like a lot of places have experience with children with obpi and/or adults with tbpi, but not a lot of places have significant experience treating children with tbpi.

Hi Sharon & Al

I don't know where in NY you are located but I am from Rockland if I can help in any way please e-mail.

We are having our first meeting to form a local support group on the 22nd of May at my home. It is just a start and some of the parents have children from the age of 10 down to 3 months. So far it is all parents of birth injured but my PT just gave my name of a young adult/tbpi and I am waiting to hear from her.
Not all of the parents have been involved with surgery some I spoke to have and some will never. But there will be parents there who have used Texas and will possible able to suppot and help you...

I am right obpi - and would be glad to have you join us if you are close enough.

Kath