United Brachial Plexus Network, Inc.

My son Kanaan is 6 mos and is ROBPI. I am trying to reaerch and look for hope in the area of shoulder tightness. I'm stretching every day and getting frustrated - WONDERING IF HE WILL EVER LOOSEN UP.

He's been out of his cast for a month (from botox) and is looser than he was right out of the cast but still cannot bring his arm to his side w/o his scapula riding up. I know that weak scapulas are common in bpi children but I'm just wondering if there is anyone who has seen marked improvement in shoulder mobiliy as a result of stretching in the shoulder area as well as in the stabilization of the scapula as recovery came in.

I am very grateful for my son's recovery to date. He is now reaching for things and can bring his arm up in front of him about 130 degrees (not over the head yet). No external rotation or supination yet.

Our recent visit to the doctor and X-ray showed the humeral head still in the right location and we are to go back in two months (the longest break we've had).

We are just in the ROM/stretch world and treading water. The plateaus are hard. You wonder if things will ever change and get better. His movements on his affected side are "stiff" and not as fluid as the unaffected side. I'd like to know what others have seen as their children grow and development.

Thx,

Chrystal

Forgot to mention...

I'm starting to see some shoulder sloping and wondering if we are on an irreversible path to bone deformity or the sloping will decrease as he recovers.

I would say ROM is very important but also any kind of weight bearing is very important for the shoulder muscles, the winging scapula, and also for bone growth.

Lisa

Hi Chrystal,
I talk to you a few time, can you explain to me what is the ROM/stretch world and treading water? My son is almost 11 months now and I never heard of this term. He is going to go in two weeks for his second botox injections and cast.
Thank you

Hi Cecile!

I've been looking for news from you!

By ROM/Stretch world, I just meant that we are spending a lot of time doing our son's stretches and that focusing on him is where we are spending a lot of our time.

By treading water i meant that we are don't feel like we are moving ahead or moving backward. Just holding our own.

Chrystal