United Brachial Plexus Network, Inc.

I have a question about Texas Children's Hospital. Dr. Parks at St. Louis told Mat and I over an email that there was not any surgery that Kyle could benefit from now that he is 7, but recommend we take him to orthopedic doctor to see about his shoulder. When I emailed TCH, they said to send a video there was still alot of things they could do for him. I guess my question is this:
Could the doctor in St.Louis be wrong?
I know a lot of you have great praise for Texas children's Hospital, some of you do not.
It is almost a 18 hour drive for us. Not that I wouldn't go in a minute if there is help for Kyle, but I am just unsure about the video thing.
I would love you opinions on this to help us make the right decision.
I think we are going to keep our appointment with the doctor in St. Louis for next week and send in the video to TCH as well.
I guess I am just looking for some advice. Kyle has a good bit of rom in his arm. He suffers a Mild RBPI, but his arm is noticeable crooked and I would love to see him be able to straighten it out.
Thanks for listening everyone!

Hello,
I would definately send a video to TCH. When we were there with our son last April, there was a 17 year old having the mod quad done on his arm. I think they are doing procedures that can be done at any age - obviously the nerve damage is a timed issue - but muscle and repositioning procedures can be done at various ages (this, of course, is just my understanding). I think it would be worth your time and effort to see what TCH has to say.
Best wishes...
Sheri and Joshua

Well if you have any doubt about age and whether or not the docs at TCH can do something when they say they can - ask Nancy Birk who had a mod quad at age 47 and can now supinate for the first time in her life!

Her email is nancy@ubpn.org.

Is it possible for you to go to a picnic/gathering where the TCH docs will be so that you can see them live and in person without a great travel commitment?
http://www.injurednewborn.com/gatherings.html

And also - did you know that you can get free airfare for children for medical stuff?http://www.injurednewborn.com/maia/travel.html

I wish you the best of luck in making your decisions - I know these are very hard decisions to make.

-francine

I would definitely send the video. My son Justin, who is six, has a mild bpi injury. He had great mobility and range of motion but also had a contracture of the elbow. Dr. Nath recommended bicep tendon lenghthening and he had the surgery in January. We are still working with ot and pt but Justin's arm is completely straight. I thank God for Dr. Nath and his expertise in this area. Hopefully there is something that can help your child. Any questions, please do not hesitate to contact me. Good luck. SEND THE VIDEO!!!