dropped the ball

[admin]

My 13yr.old daughter has a robpi. She has had therapy off and on since birth. Her range of motion is 85% but she cannot supinate and she has some winging.

Lately she has been complaining about pain and sensitivity. I didn't realize, until I discovered this site today, that pain can be such an issue at this age. Also, after exercise her right arm is extremely red and blotchy.

Her pain led me to this site where I have learned so much in one afternoon. I have felt blessed that her injury has been somewhat mild, but this may have kept me from being more proactive on her behalf. Yikes.

Any suggestions on who to see first? Pediatric neurologist?

Thank you.

[Cara]

MAny of use visit BPI clinics. They incorperate neurologist, therapist, orthapedist into a team approach. Most common you will hear of is Texas Childrens Hospital. We personally go to St. Louis Childrens hospital. No matter where you go you want to find someone who specializes in the area of BPI.

[PeggyF]

Are there any BPI specialist in your area?
If there are, I'd start there. If not, you could contact a PT or OT with BPI experience and start asking questions there. A pediatric neurologist may be beneficial, also.
Try to find someone who has seen BPI children.

Peggy

[admin]

Cara, thanks for your reply and suggestions. Do you know of a Dr. Gelberman in St. Louis?

[CW1992]

Hi Nancy,
My name is Christy and my daughter is Brittney. She is 11 yrs old with a left arm birth injury. I am sorry that your daughter is having pain and hopefully you will find the answers you need to help her.
I found this sight about three years ago. It was pretty overwhelming!! So much info when there wasn't any before it seemed. Brittney has not had any surgeries so far and thankfully is in no pain right now. She has a moderate injury and can lift her arm about 75 - 80% high and supination is a problem but she compensates by holding her arm against her stomach. Sounds like your daughter has been doing just fine up until now - so I'm glad you were able to find some info here. I just wanted to welcome you to this site and I hope that you are able to find some answers to help lead you to a doctor who can help your daughter.
Christy

[sunflowers]

My son Mike is eleven and we fronfd the support group 3 years ago also my son we recently found out is a bilateral BPI injured child previous to his trial we always id him as a lobpi, because the left is severely affected, the right has fine motor deficit we we finally have a reason for.

We hope you have good luck finding qualified people in your area, it has been a struggle where we live.

Michele

[Monika]

Nancy,
Did you ever live in the Newport News/ Hampton area of VA?
I once worked with a Nancy Null at the Office of Human Affairs, just wondering if that was you.

[Joann (VA)]

Don't forget to check out the UBPN Medical Resource part of the website for more information:

http://ubpn.org/medicalresources/