United Brachial Plexus Network, Inc.

My daugter Destiny started using her biceps in mid May. We went to Shriners in Philly at the beginning of June and they said that she didn't need primary surgury because she already had movement. However, here it is September and she doesn't seem to be getting any more range. She can't bring her left hand to her mouth, only about to shoulder height and always with elbow pointed outward. She has been using the hand more in the limited range she does have. Our next appointment at Shriners isn't until December. Has anyone had this same situation before?

You didn't say how old your child was. We experienced a delay in bicep function, then it started coming back. Then a plateau, then some more. Similar in how our daughter's supination and other ROM has progressed. Keep doing the ROM exercises. Stabilize the scapula while doing the ROM. Get your child to play and move that arm!

Tanya in NY

Destiny was born 11-25-03. She regained some biceps at 6 months. Nothing more for the past 3 months.

My daughter started with bicep flickers at about 4 months old. She could lift her hand to her mouth by about 1 year old and still (she's 2 1/2) can't lift her hand to her mouth without her elbow sticking way out and her shoulder shrugging - and she can't supinate all the way.

I have recently found out that she her shoulder is dislocated though - that may be partly why!??!

Things progress and then plateau - it's all very frustrating

Cathy:

My son didn't need primary for the same reason and ended up doing exactly what it sounds like your daughter is doing now - plateauing. He ended up needing the mod quad.
Maybe you should get a second opinion from another BPI doctor, just to be on the safe side -?

Good luck!
Janet

I guess I should have mentioned that Destiny cannot supinate at all yet. Maybe I'm just being silly.
Has anyone ever been at this point and then still had to go back and have primary done?

Cathy,

This injury can be so frustrating, and the progress or lack of progress can really drive you crazy! It just seems like there are always so many ups and downs, and you never seem to know with any certainty what may be just around the corner.

If you are concerned I would contact your doctor immediately. I would ask to send a video, speak on the phone, and get in for another appointment ASAP, especially if you are feeling that primary surgery might still be necessary with the lack of improvement. You are your child's advocate. Go with your gut and get answers to your questions.

Hang in there,
Lisa

Maybe it's time to get a 2nd and 3rd opinion - especially when it's something as important as primary or no primary. We get more than one opinion for everything.

You have up until Destiny is one year old if you want to cut it close. (for nerve surgery to work at it's best)
If you are concerned get a second or third opinion. Supination problems aren't b/c of no nerve surgery. My daughter had little supination for a long time and she had excellent recovery. After her secondary surgery her supination has gotten better and close to full.
If I were you...I would get a second opinion OR I would contact Shriners and tell then your concerns before it is too late. You are the mother and you know whats best for your child. I am sure they will understand you phone call and your concerns. See what they have to say.
Good luck.
Krista