United Brachial Plexus Network, Inc.

My Dauthter is 10 yrs. old. She had the Latimus Dorsi transfer at age 5. She was doing great until the past few months. Now she as lost about 2 inches in reach. We are still doing therapy EVERY DAY..
We have an appt with a doctor here in Alabama.
Our Ped's doctor said we may need to send her to Shriners. I really dont know alot about Shriners hospitals and if they can help at the age. Haley had her first surgery at Scottish Rite in Dallas, Texas.
Dr. Marybeth Ezaki, SHE WAS WONDERFUL... GREAT DOCTOR.

I dont know if its due to growth? Or just progression on the BPI injury. Haley has erb's Palsy C-5 & C-6.
If you have any advise let me know.
Thanks,
Kimmie

Kimmie,
We are now seeing Dr. Kozin at Shriner's in Philadelphia. I can't express to you how pleased we are with our treatment there. We were going to another clinic but made a switch based on surgical procedures available.

Cindy

We live in Birmingham, Alabama
I wished we were closer to Philadelphia.
Thanks for your comments.
Kimmie

Kimmie:

Hey! I saw that you posted on the other board too. I AM FROM BIRMINGHAM ALABAMA TOO!!! I have erb's just like your daughter. I am 32. Nice to see you here.

Deanna

My daughter saw a doctor from Shriner's Hospital and during the surgery her phrenic nerve was cut. Unfortunally, through the medical records and speaking with other doctors there the surgeon tried to cover it up. This doctor was not familiar with BPI as they told me. Please be sure to research the doctor you choose. I can not tell the doctor's name because of the law suit but my daughter's life and life expectance will never be what it could of been if this mistake never happened. Or if the doctor would have just admitted to it within the first 6 months. Again, please be sure the doctor is an expert in this field.

Angie

We live in Philadelphia and our daughter goes to see Dr. Nath at Texas Children's Hospital. It's easy to get there - free airfare is available. You can send Dr. Nath a tape and he will evaluate your child that way. Dr. Nath's email is rnath@bcm.tmc.edu and he's very email friendly - will answer any of your questions that way. He also has a website http://www.brachialplexusinjury.net. Information about medical travel is found on my page http://www.injurednewborn.com/maia/travel.html. Just giving you another idea to think of. We saw Dr. Nath this weekend at the bpi symposium and he's really on the cutting edge of things (no pun intended). His presentation was awesome and so are the results we've had with Maia.

good luck,
francine
http://www.injurednewborn.com/maia/homepage.html

Kimmie:
We saw Dr. Ezaki originally and ... well ... can't really elaborate. Let's just say our experience led us to Texas Children's Hospital. We highly recommend it and wouldn't go anywhere else with our child for brachial plexus treatment.

I again will just say that I AGREE with Null and we go to Texas Children's Hospital.

Angie

We live on the west coast and bypass TCH because let's just say that our experience there led us to Shriners in Phila, along with a large list of others who don't post here. Point being you REALLY have to research who you're going to no matter what their status is.

Kimmie,
We take my son Bradley robpi to Dr. Nath at Texas Childrens, he has had tremendous improvement since his last surgery. He had the Clavicular-acromioplasty with shoulder reconstruction on Dec 1st. He is no longer posteriorly dislocated. His arm looks much more normal. We still have some habitual issues that need to be broken. The bio-mechanics are now fixed. That is something that no matter how much pt/ot is done, will not fix. Maybe you might want to look into having a 3-d cat scan done. This scan shows the structure of the bone formation in the shoulder as well as identifies a posterior dislocation. If her arm is internally rotated, based on our experience, that is an indication of a dislocation. Good luck in your endevours, we are here for you. Bradley had a ruptured c-5,c-6, and c-7.