United Brachial Plexus Network, Inc.

Hi! My name is Marcie and I'm a new mom whose son was diagnosed with OBP. I was just curiouss if anyone would like to share similar experiences so I can get an idea on how different each case is.

My son is nearing 6 months and for the longest time my neurologist told us not to touch or really move the arm. Of course this is boloney but I didn't know. I was just doing what the doctor told me. As it turns out, my son's physical therapist explained that he should have been having his arm worked since day one. I was upset to hear that, of course, but we've seen dramatic improvement in his arm since we started working it.

In any event, I've researched all that I can and know that cases vary in severity and length of recovery. I'd love to hear stories if anyone's willing to share!

Thanks!

Welcome You will find information till it runs out your ears...... some you like some you don't.
My story I have a son Thomas who will be 2 May 7. We were told not to worry he will be fine... Of course that never happend. I found all I could on the internet and searched for therapist who had worked with BPI. Then I got in touch with Texas Childrens Hospital and Other doctors in Our area. At 5 1/2 months Thomas could only move two of his fingers. We had surgery and he had damage to c5,6,7 complete ruputures. Nerve grafts to all where done. He regain hand and wrist movement and bicep but nothing else. We had sugery on his shoulder just this past Aug. and I am proud to say he can raise his arm up,hold things with his hand and get it to his mouth. He still has weak triceps and deltoid. We go to therapy every week OT and PT. But I thank God and the doctors and therapist for all we where given back.
http://www.fortunecity.com/meltingpot/m ... /index.htm

Feel free to e-amil me if you need too
carron

Glad you made it here! This is a great place for support and info! Wonderful that you see improvement!
My daughter had avulsions of c7,c8 and t1. The upper nerves were a big mess too. And her autonomic nervous system was damaged as well. She has had one primary surgery at age 4 months and at 6 months post op she has still almost no movement in her arm. Just a little shoulder shrug and some triceps and a weak reflexive grasp. We are going back to tch for the mod quad and possibly more grafting in June.
Welcome!
Jenny

My name is Terri. My daughter, TeNeisha, has a ROBPI. She is now 16 months old.

We are from Indiana. She was going to Riley Children's Hospital, but she was recently referred to Cincinnati Children's Hospital.

She does have movement in her fingers and wrist. She was wearing a hand brace for about 10 months to help her gain that movement.

She does have some bicep, but very little tricep. She has had no surgeries at this point. We have just found out exactly what she had. The doctors never really told us anything except that she had stretched nerves. They made it seem like a little therapy and she would be okay.

She has been doing therapy since she was about 2 weeks old. She is now wearing an elbow brace to help her to straighten her arm. It hasn't really shown any signs of help at this point. She has been wearing that for almost a year now.

I am new to this injury also. I have found a lot of help and support through these message boards so far. Sometimes it is hard to read some of the information, but I do the best I can to learn as much as I can.

TeNeisha has pretty much been at a stand still for the last 4 or 5 months. That is why we sought a second opinion. Hopefully in Cincinnati, we can get a doctor that will open and honest with us.

I don't know how much this will help you. But that is our story.

Terri

Hi Marcie!

Wow - can't believe about your neurologist but I can..it is SO sad that these docs just don't know anything about this yet!! Maybe you can pass on your neurologist's address to Nancy Birk (nancy@ubpn.org) and she can put him on the mailing list and send him the last Outreach and the Awareness Outreach so that he can get a little educated?? (you should go on that mailing list, too)

There is a lot of stuff you can read right here on UBPN's site. You will find loads of stuff at http://ubpn.org/awareness in the resources section.

Also - I have journlalized our entire journey to date with my daughter Maia - now age 5. That webiste is http://www.injurednewborn.com follow the links to Maia's page.

Also- here on the home page - there is a link you should check out for INFORMATION FOR NEW PARENTS... it's on the right side.

I also run a chatroom on Wednesday nights http://www.injurednewborn.com/chatroom.html and we'd be happy to have you join in!

I wish you the best for your little one,
francine

We are glad you found us. We have all found great comfort in the support of each other. You will find that we are a diverse group, from all over the world and with lots of different experiences. The miracle of the Internet has enabled us to find each other and we continue to learn from each other.

We have a list of bpi specialists in the medical resources directory that might help you find a specialist if you are seeking one.
ubpn.org/medicalresources/

It also has a list of questions that are good to ask when selecting a doctor.

If you'd like to get on our mailing list to receive Outreach, just email me your mailing address (nancy@ubpn.org).

Nancy Birk
UBPN President

greetings and welcome
I have a son Max who is 4 -no surgeries (yet anyways)great recovery, and 5 other kids -
I also happen to be activein the birth community as a homebirth advocate and asst and a childbirth educator and labor asst,
We (my family)are STRONG believers in chiropractic adjustments for management of BPIs, or as a part of the management,
WELCOME
love your baby, all else will follow,

Hi Marcie, I have a 7mo old daughter, Kearney, with a LOBPI. She could move her fingers and shrug her shoulder at birth. Around 2.5 months she had great improvment and by 3.5 months she could bring her hand to her mouth while sitting up. I understand this is a great milestone and signals return of bicep function. My daughter is still internally rotated and cannot suppinate. We have seen many BPI specialists and most have stated that she will probably need secondary surgery to release contractures that develop due to muscle imbalances. As an outsider, you would not notice anything wrong with my daughter right now. I feel very blessed for her progress but I know we have a long road ahead of us. Best of luck to you and your family. Find a BPI specialist ASAP and then see 2 more for second opinions. Where are you located?

Thanks to everyone who replied!

We live in Las Vegas and have thought about getting second opinions. We're going to our PT tomorrow to talk with her some more about how Lukas is doing. It's hard to read some of the responses but I'm trying not to let it affect my positivity about Lukas' recovery.

We haven't been told anything really significant about BP and I've had to learn the lot of it on my own. Lukas has full shoulder movement, can squeeze with his hand, bend his wrist and as of just recently can bend his elbow and bring it to his mouth. Not all the time and not fully but he's getting there. When he was born he couldn't move it at all and it was just...lifeless. He still can't open his hand on his own but from what I understand that will probably be the last thing to heal if it heals at all. Here's hoping.