Global Palsy

[tjennings]

Can anyone give me information on this. My daughter is 20 months. She was diagnosed with Global Palsy. She had surgery in November 08 Ft. Worth TX. The Dr. was going to graft nerves. But while during the EMG internally they saw a slight senor of movement. The Doctors decided not to graft. She had a huge neuroma, so they worked on removing as much of the scar tissue safely for 12 hrs. Since the surgery she has gained some deltoid movement, but that's about it. We went to St. Louis Tuesday, to see if there's anything else that can be done to help her. The doctor said that it wouldn't help her to do muscle and tendon transfers because she has no hand function. Is there any more suggestion for me, where do I go from here. Please any information. I'm lost right now. I can't get any assistance from state we have 4 other children, but the SSI office said my income want allow for any help. I think that's unfair, but what do I do. She's going to need PT for the rest of her life, is this true. What else can I expect? Thanks

[claudia]

Go on the medical resource page of ubpn. Start emailing the docs. We have wonderful docs there. I know it is hard to do keep at this, but it could be well worth it. We have traveled near and far for our daughter and it finally paid off.

Get all the info you can (get the medical records from the surgery) and tell the other docs what she had done and what function she has/doesn't have.

btw, what doc did you use in Ft. Worth.. I didn't know there was one there that did bpi surgery...

good luck,
claudia

[tjennings]

It was Dr Richard Roberts, over at Cook Children's.

Thanks for the info.

[hbpsupport]

Dr. Rahul Nath is who I see for my daughters LOBPI, he is great I think you would get great info just by sending him a video of your daughter ROM and from there he get's back with you vERY quickly. 713-592-9900 drnathbrachialplexus.com