United Brachial Plexus Network, Inc.

My daughter was born on 10/23 and has BP in her left arm. She had no movement at all at birth but now has very strong hand, finger and wrist movement. She also has some shoulder movement. She has no bicep movement at all. We go to PT every week and she has met with an orthopedist and neurologist.
I was wondering for those who saw recovery early was it spontaneous improvement or did you see improvement slowly over a course of time? We're reaching the 3 month mark where my Dr said he would like to see bicep movement but since she has nothing at all I'm worried we won't be there unless she just spontaneoulsy gets better.
Also, how long do they usually let it go before they recommend surgery. Do they do an MRI to find exactly what the problem is?
I'm so frightened at the thought of my little tiny girl having surgery. It's probably too soon to be worrying but I'm sure you all can relate.
I'm glad I found this board. I'm sure I'll have many more questions in the upcoming months

HI,
Congratulations on your beautiful baby! Welcome to the boards. You have come to the right place to get answers and support.
I am afraid I don't have much info on newborns with BPI. My son is a TBPI which happened later. Here is a link to a wonderful recovery story of another baby that was OBPI. I know each one is different but this will give you an idea of what age they saw improvements. An MRI will give them an idea of the area that was injured but as I understand it they can never tell conclusively until they actually go in. Also I think the recovery is over time, not spontanious. Have you seen a BP specialist?
http://ubpn.org/messageboard/thread ... &tstart=45
Sue

Thank you for posting that video! It gives me hope
No, we have not seen a BP specialist.

My daughter's biceps started to show recovery just a few days before the three months milestone. If she didn't showed signs of recovery at three months we would have chosen for surgery. We were very lucky.

She's now 15 months and she is still progressing without surgery.

I video taped her recovery, you can see it at http://www.youtube.com/watch?v=wxztZELUoGo

Each injury is different and so is the pattern of recovery. I definitely would recommend to see a BPI specialist.

Congratulations on the birth of your daughter!

My daughter didn't start to show any movement in her shoulder until she was 4 months old, and then it was just what we refer to as a "flicker." She then showed progressive, but slow progress, although not a full recovery. We did not see a BPI specialist until our daughter was about 18 months old, as we were not led down that road by our healthcare team unfortunately, and I had not found UBPN yet. Therefore, I don't know for sure if she would have required or benefited from any early surgeries. We were seeing a more local neurologist/orthopedist, and they really didn't know much about BPI in retrospect. Please quiz your healthcare team diligently for your daughter's sake. If you think that there could be a more thorough plan, then you need to find another provider with better knowledge of BPI. Don't be afraid of that.

I wish that your daughter does show spontaneous recovery. That is every parent's dream. I'm wishing that for her and your family in the New Year to come.

Tanya in NY
Amber's Mom, ROBPI, 4 years old

Thank you for all your kind words.
How do you find a BPI specialist in your area? I'm on Long Island.

I'm sure others that have seen BPI specialists in that area will post for you. But also at the top of the page is the resources link, you should find some info there.
We went to Mayo in MN, but have seen others list Shriners in Philly I think.
Sue

Here's the Medical Resource Page Link.

http://ubpn.org/medicalresources/us-bpi.html

We live in Upstate NY and travel to Shriner's Hospital in Philadelphia, PA to see Dr. Scott Kozin. We've had wonderful interactions with him, our daughter is very comfortable with him, I have trust in him, he is very knowledgeable, he's kind, and his staff is wonderful as well. They are a free hospital to boot (which is a plus if your insurance company is always balking at paying for things like my BCBS is). Dr. Peter Waters at Boston Children's Hospital is someone that I have contacted as a second opinion as well and was very happy with our interaction. I've read many posts from families who have seen him as well. Use the resource directory to get names, then ask specific questions. You need to make a personal choice about who you want to see. Each family chooses a certain doctor for various reasons. Each choice is very personal. Good luck with your search.

Tanya in NY
Amber's Mom, ROBPI, 4 years old

Hi and welcome my fellow NYer. I live in upstate NY as well. It might be time to start a NY support group unless one already exists.
You are way ahead of most of us that you found UBPN as quickly as you did, it's a great resource and place to talk to people who are going (or have gone) through the same things.
I have heard over and over that timing is the key to determining whether surgery is appropriate or necessary. The general consenus seems to be that if the child is not completely healed by 6 months the injury is permanent. The window is usually between 3-6 months of age. My son had a similar situation with his injury, he has not had surgery but alot of therapy. Everyone heals differently, it's best to have your daughter seen by someone who knows how to treat his injury and has experience with it. Were you aware that Dr. Nath will be in NJ in 2 weeks, I don't know if there is space, but it might be 1 of several opinions..before you make the final decision about surgery.

Hi, I live in New York, as well, and we see Dr. Nath, have had two surgeries with him thus far and are very satisfied. He will be in New Jersey on January 17 and 18 for his clinic, which is free, he will also be in Albany in May. Feel free to e-mail me should you have any questions.