United Brachial Plexus Network, Inc.

My daughter, Cathryn is 9 months old. She had primary surgery in December. She's had a flaccid arm until Feb of this year. She is just starting to move her fingers. She only has triceps no biceps. Cathryn has a C5 tear, C6 and C7 are avulsed, and C8 and T1 are severly stretched.

Last week she was scheduled for another surgery however, it was canceled because she had a cold.
Cathryn's docotor wants to take her to the OR and test her nerves. If her nerves respond then he wants to do the Mod Quad surgery. If they don't then he wants to graft another nerve to her rib cage nerves and bring it up to her arm.
My questions-
Has anyones child had Mod Quad surgery this early? I thought it was only for children over 2years.
Has anyones child had the nerve graft to the rib cage?
It was recommend that we start using TES now. Our Physical therapist said it won't work on children this early. Anyone using it on younger children?

Thanks
Sandy Dansby

Matthew is 14 1/2 months old and we're going to learn how to use it on Thursday. I've spoken to a few people about it and everyone spoke highly of the results. I don't think anyone started around 9 months though.
Cindy

Hi Sandra -

Sorry to hear about Cathryn's injuries.

I know that they are beginning to do mod quad earlier and earlier because they are trying to get that full range early on to try and stave off joint deformity - I just don't know the earliest age they have done. Maia was actually the first child they did it to below 2 years of age and she was 19 months and that was 2 years ago and since - they've been doing it earlier and earlier.

I wanted to comment on the TES. I recently sat in on a TES class (only because I coordinated it so I sat in the back) and they discussed that TES could be done early on but the reason it's not done early on is because there just isn't enough room on the child to have the electrodes in the correct placements with the necessary amount of space inbetween them (2-3 finger widths). Leslie Mckibben PT was the teacher of the class - her email is lmpt@worldnet.att.net and she can answer questions about that. Maybe they have figured out an alternative way for electode placements for babies (since that class)? One never knows!

Also, I'm always SO happy to hear that a surgery was cancelled due to a cold. I rejoice in the fact that someone checked and didn't place a child in greater risk then they have to be in the first place. Thank God for that cancellation!! (know what I mean?)

I wish you strength as you do your research and figure out Cathryn's path.

God bless,
francine