United Brachial Plexus Network, Inc.

Hi! Hope you can help me. My daughter had robpi and after three years of therapy, splinting, etc., had recovered about 90 percent function, worked out her elbow contracture to 0 degrees and had near-equal strength. Two months before her 13th birthday, she now has pain in her elbow and shoulder, a 9-degree curvature in her spine, uneven pelvis and has lost 16 degrees in her range of motion at her elbow, with additional loss of range of motion in her shoulder. She's got internal rotation and strength problems as well.
NOW what do we do? We knew to watch for scoliosis and we knew to keep an eye on her through puberty. Well, she grew 7 inches and gained 35 pounds in 16 months and this is where we stand.
Anybody been through this? Anyone have any ideas?
Appreciate any and all help. We had a full eval at PT today and will start with treatment, strengthening and stretching, but I wonder if there's more we should do.
Many, many thanks.
Colleen

Hi my son just turned 13 years and the 12 -13 year resulted in the same problems for us - more pain , loss of range and strength , worsening shoulder internal rotation and elbow contracture - we have stepped up active treatment and these are some of the things we are doing during this phase of heavy growth
- TES - helps the weak muscles to keep up during the heavy growth - apparently the muscles normally loose flexibility and strength during heavy growth spurts and then catch up after the growth slows or in the next year - I guess this is aggravated with the weakness and bpi tightness - and the already weaker areas show up again stronger - the TES will also help the bone growth to stay more equal - to find a TES therapist contact info@tascnetwork.net -

- bracing we never understood why even for someone like my son who also had a high recovery rate that bracing was important - apparently the bracing support reduces the pain but also makes sure things don't start to grow deformed (especially on the shoulder joint by having it function in the wrong relation ship to eachother ) the brace also helps the weak muscles not be overpowered by the strong ones and then they get too stretched out and can't contract as well and the muscle imbalance gets worse. This has happened in the muscles on the back of my son's arm and shoulder -especially the scapular muscles- and the hope is that the brace will hold these muscles in a shortened position where they can get stronger again. The TES will also help with this.

we are getting a Ark custom made brace for him that is to arrive this week (www.arkpcb.com )

We also went to see a massage therapist to learn some new techniques to stretch the problem areas and help the muscles relax..

We bought an electric heat pad to warm the muscles up good before stretching.This makes the stretching way more effective.

All the best, Vanda

I would consider doing chiropractic and seeing a bpi specialist.

Cindy

Colleen,
We had similar issues with Emily around that age, and she is now 17 years old. I have emailed you.
Please feel free to contact me.

Sue

sue - is there anything you can share here to benefit the rest of us facing these challenges?

Vanda,
Emily's injury was a severe stretch injury,she made a decent recovery after about 3 years of PT, and we thought we were out of the woods. She was "fine" for a number of years in that she had good range and function, but when she was around 9 or 10 years old she began gradually experiencing pain, loss of range, torticollis and a host of other problems. We tried PT again, to no avail. Finally ended up at Texas where she had a pec release, removal of scar tissue, and lengthening of the teres major . She was splinted in the statue of liberty splint from the start which is no longer done with older children, from what I understand. While we did see improvement in some areas, I have never been comfortable with her hand function since the surgery, and yet several doctors have said it is ok... Over all, we did see improvement in posture and pain. Now she will have pain if she skips a week or two of therapy, but can get back on track right away when she returns. Prior to the surgery, there was nothing that would work at all...
I'm not sure this is really helpful, but if you have any specific questions, I would be happy to answer them.
Sue

Thanks Sue , it all helps

I forgot to mention Emily also had the subscapularis release. She did NOT have a tendon transfer - which cut back on her recovery time. I hope I got all the medical lingo correct! She was 12 years old at the time of the surgery. I should mention that the appearance of her back was greatly improved - she no longer "wings" visibly in the back. Something she has been very happy about whenever she puts on formal dress or a swimsuit!! (:

Hi Colleen, My 14 year old daughter just had a mod quad 10 days ago at TCH. Our history sounds a little like yours. Ruth began to have pain around 12 years of age. I have been told that it is not unusal for young teens to have some pain related to growth. But it sort of woke us out of our "she's doing fine haze" and made me start to look at other options to help her. I can't tell you yet how successful the surgery was, we'll know more in a few months. I wish you luck in your research and efforts to help your daughter. All the best - Nancy

Sue (Em's Mom),

Would you mind sharing what changes you noticed in hand function that concerned you after the surgery?

Thank you so much for sharing. It is so helpful to hear from some of you with older children!