United Brachial Plexus Network, Inc.

Hello my name is Leslie, I have a five year old daughter with ROBPI. It was a very traumatizing event for us all. I have recently started looking for out sources to talk to people with this same problem but im not really having any luck.

I joined this forum and have learned alot of things about BPI. Maggie has only had one surgery to repair the nerves and I think I really want to ask if she should have other surgeries so she can lift her arm and hopefully throw a ball or play an instrument or anything really. Is that my place to ask or should I leave it up to the doctor to tell me when she needs surgery.

Maggie goes to St Louis to Dr Parks anyone ever had him. So far I think he is a good Dr.

Anyways I hope I get some replies. Thanks Leslie

Hi Leslie,
welcome to the boards! You are Maggie's mom, of course you have the right to ask the doctors for a possible timeline.

Even with limited use of one hand it is totally possible to play an instrument and sports!!! My fav sport to play is softball, I catch and throw with my left hand because I dont have enough use in my right hand. Many people dont even notice I am doing this. Last summer it took an ump the majority of our season to notice and I was playing catcher so every pitch I was taking my glove off and throwing with my left hand.

Dont feel like Maggie wont be able to do things that she wants to, if there is a will, then there is a way!!! She will find ways of doing things that work wonders for her!

Hugs,
Amy 20 years old ROBPI from MN

Thank you for your post. My husband and a little bit myself have kinda sheltered her so much that now I just hope it isnt going to be a problem. She is an amazing kid and the things she does sometimes just amazes me but I think she could probably be doing so much more if we didnt always do things for her. We are getting better though.

It is amazing to me how much I have learned by reading all of the old post from people. I never really even thought of looking at my daughters body and from reading I was looking at her the other day and her shoulder difference kinda scared me. I just cant wait to see her doctor in October or do you think I SHOULD wait.

To be honest waiting or not waiting really isnt something I can advise you of with out knowing your child. You know her best and your gut knows whether or not you should wait. October really isnt that far off so I would guess that waiting would be ok. The best thing that you can do for her now is let her be a kid and do things herself. You said you are working on it and thats AWESOME! my dad still likes to put me in this bubble and it drives me crazy! I know when I will need help and I can ask for it. Your daughter will learn the very same thing if you let her, and you should.

I think the shoulder difference as you said it is common with bpi. Its from compensation and non use. It doesnt have to be obvious though, I can barely even tell my shoulders are diffeent any more. A bit of therapy and learning the correct way to move my arm. But thats something that really wont affect Maggie right now. It didnt really even bother me but it was part of my pain pattern so my OT helped me to learn to use correct muscles to innitiate movement and the differences in my shoulders narrowed. When and if it becomes a problem for Maggie then I would suggest seeing a therapist and it can probably be solved in a matter of a couple months.
I hope that helps!
Amy

for now enjoy your sweet little girl!

Leslie
Welcome to UBPN Message Boards.
It will help you to read some of the older posts here and on the adult obpi message boards.

I am glad to read that you are letting her do more for herself. One of the greatest gifts my parents gave me was the courage to believe in myself. They told me I could do anything I put my mind to... My Mother always told me that I could never say "I can't" because "can't means you won't" she was right. I may do things differently than others but I can do anything I really want to.

I am an adult birth injured and a grandmother and still able to play with the kids and enjoy them.
Try not to worry too much and enjoy Maggie time goes by so quickly and she will be grown before you know it.

OBPI kids are very strong determined little ones.
I am glad you found us.

Kath robpi/adult/67

Hi Leslie,
I am Angela, (central Illinois) mom to Jill born severe Left OBPI. Jill is now age 23, married and just graduated from Illinois State University. She is an Art Teacher.

I hope someone will pull up the article
"What it is like living with a disabiltiy in the family" I don't have time the library is closing in a few minutes. "small town & summer hours".

I used to FRET and FRET. We did however, work and work at therapy..........it worked. Jill surprised a lot of medical people...Dr's. OT's etc.

You are right... Do not baby her.

My Jill is doing fine...........better than fine.

Bumped up the article for Maggies mom !!!

Leslie,

Welcome to the board! You'll find lots of information, and some really wonderful support, here. I've learned that everyone here really wants to help one another, and no one gets offended by truly personal questions (believe me, I've asked them)!

As far as the secondary surgery is concerned, I would most definitely ask the doctor about it. Ask the doctor to educate you about possible procedures, and whether he feels she would or would not benefit from them. As a rule of thumb (and there are always exceptions), if a child needs primary surgery (nerve grafting/transfer), he or she will probably need some form of secondary surgery. A very common secondary surgery is muscle/tendon transfer to gain external rotation - but there are other types of secondary surgeries, as well. If your doctor is a BPI specialist, he will be familiar with these procedures and can speak knowledgably with you about them.

If you are not seeing a BPI specialist, there is a resource page on this site listing some excellent ones.

Hope this helps. And, like I said before - we are all willing to answer any question you might have, no matter how personal.

mica

Welcome to the boards, Leslie. My name is Tanya, and I have a daughter named Amber who is 4 1/2 years old. She has a ROBPI. She has had one surgery (a secondary surgery at age 25 months of age with Dr. Kozin). She has made great progress!

You are your child's best advocate. Educate yourself in the best way possible and ask as many questions as you feel you can until you think you understand what you need to understand, whether it be here or at the doctor's office.

I don't have any personal experience with Dr. Parks, but maybe other families on this board do. Keep your daughter active. That's our philosophy in our household. Amber gets her OT, but she also participates in many other activities (dance lessons, swimming).

Always feel free to ask questions here. This is the place where I first learned vocabulary and got a lot of support from my "extended family" that has been wonderful over the past few years. Hopefully you'll feel the same way about it as I do.

Great to meet you.

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