United Brachial Plexus Network

I took this picture the other day -- http://www.trivue.org/images/Jessica.html

It pretty much sums up my daughter Jessica's current problem (bringing her hand to her mouth with the back of her hand and elbow out to the side). She can do everything else with it (external rotation, over her head for pacie, stretching over head while sleeping or lying down, etc.). She also doesn't currently have any visible contractures. I was just curious if anyone saw this move before with their child, and if so, what other problems did you see in the future, or what surgery corrected this. Also, did it improve at all with therapy? We will be seeing all the surgeons in the next 2 months, but I just wanted to hear from anyone who has seen this in their child to hear about how this problem actually manifests itself in the future.

Thanks!
Michelle

How does it "manifest itself"? you asked... Well this is how. The lack of supination is a big problem for all of these kids. As is learning to use the muscles in the proper way. That is: on the unaffected side if she wanted to do anything she just does it, but on the affected side she has to LEARN to do it. And that means thinking about what she is doing. In the years to come (after countless hours of therapy) she will learn to do things that she can't do now. Some of this improvement comes from the therapy, some from compensatory skills, and some from the changes in their bodies. As you note, babies and toddlers have arms (and legs) that are short in comparison to their bodies. As kids grow, their arms and legs do too, and so they can "learn" to do new things.

Does this mean she will "learn" to supinate. Maybe. If that is in the cards for her. If you don't have the innervation and muscle strength to supinate, you won't supinate. My daughter has compensated by putting food in her affected hand and moving her head to the food-all out to the side...she can't bring her arm in and do all of that. Or she brings her knee up (foot on chair-gotta love it) and leans her arm on her knee and brings her mouth to the food. We are thrilled. Hey, it is hand to mouth!!!!

I recommend making sure to properly rom the forearm, so that it is loose when the biceps really start to fire. Remember to hold the elbow when you range, so it is supported.

Patience is such a difficult thing...

good luck,
claudia

My 18months old did this. Just last week was the first time she brought her hand to her mouth with the elbow down. she only did it once but at least i know she can do. As claudia said, she needs to "learn" to do it. She has never had any surgery (at least not yet). When she first got her hand to her mouth it was palm out with elbow raised, then it was palm in with elbow raised and hopefully we will see more of palm in, elbow in. We stretched alot and have OT 1x/week. Our duaghter can do pretty much everything, arm above head, arm behind back. she crawled normally..actually that was the best therapy for her, i wish she still crawled. Good luck

Michelle,

Jessica is so cute. She looks just like Hannah did before we had the primary surgery. At 6.5 months old Hannah brought her hand to her mouth with the back of her hand and elbow out. Hannah's elbow stuck out because she did not have any biceps. She was compensating. When we went to clinic they put a lollipop in her hand and held her elbow at her side and she could not get her hand to her mouth. She could also do everything else that you named. She did have the primary surgery and she had neuromas on the C5 & C6 nerves. They also did about 7 nerve grafts. Without the surgery Hannah would not have improved because there was damage to those nerves that would have never been repaired on there own. We did not see any contractures visibly but after the primary they did tell us that she was a little tight under her arm because she had such great movement and was compensating prior to the primary surgery. We did have the MQ at 11.5 months old. We are doing great. We have full range of motion except for arm behind the back. We can get her hand in her back pocket. She is 28 months old now. We were also told hopefully no more surgeries. If you have any more questions feel free to e-mail me.

Lisa

Jessica is so cute!
I never had surgery but that is how I would get anything to my mouth if I used my right arm. Like Julianna I use my knee and unaffected arm to prop my right arm... in fact that is how I was able to hold and feed my children and grandchildren... it works for me... and feels natural for me.
Kath

I'm so confused. I thought her problem had more to do with being internally rotated (if you hold your arm in internal rotation and try to bring it to your mouth, the way she does it is the only way to accomplish it), but now I'm not sure if it could be weak biceps and supination?

The last 6 months have been such a blur, but I believe when she first started bringing it to her mouth, she did it without bringing her elbow out to the side, that is a recent development.

Thanks everyone for sharing your experiences. I'm happy to hear that (at least) this problem isn't unique to her.

Our son with ROBPI is 18 months now and the supination has been one of the last things to come back. He's looking more and more symmetrical each day and can now get around past neutral consistently, and is scribbling with a crayon in his right hand.

He's had no surgery up to this point. He did have an elbow contracture a few months ago of about 10 to 15 degrees but with a dynasplint at night only, he's now back at 0 degrees. He also has the typical scapula winging which looks strange but so far has not called for any surgery. We go back next month to check in again with the BPI specialist.

I know it's hard, I can still remember that phase, but try to be patient and see what happens and get those surgeon opinions. We got two opinions and thankfully they were identical and said just keep up with the physical/occupational therapy for now.

She's a cutie, hang in there!

I was getting a little nervous (after reading these responses) that I was missing her action as a sign of a weak bicep -- or perhaps a compensating move for a bicep that isn't really working, but first thing this morning when she woke up, I held her elbow down at her side (boy was she mad!) and put something in front of her and she was able to bend her arm to reach for the toy - what a relief!

I've already accepted the fact that she will undoubtedly need surgery (if I want her to be as close to 100% in function and appearance as possible), but I'm just trying to determine for myself what is causing her to do this movement. I wonder if it's a weak bicep/supinator (it's there, just weak) or if she internally rotated or a little of both?

Looks like I'm going to drive these BPI specialists nuts with my never-ending list of questions!

Thanks again everyone!

Michelle

> I took this picture the other day --
> http://www.trivue.org/images/Jessica.html
>
> It pretty much sums up my daughter Jessica's current
> problem (bringing her hand to her mouth with the back
> of her hand and elbow out to the side). She can do
> everything else with it (external rotation, over her
> head for pacie, stretching over head while sleeping
> or lying down, etc.). She also doesn't currently have
> any visible contractures. I was just curious if
> anyone saw this move before with their child, and if
> so, what other problems did you see in the future, or
> what surgery corrected this. Also, did it improve at
> all with therapy? We will be seeing all the surgeons
> in the next 2 months, but I just wanted to hear from
> anyone who has seen this in their child to hear about
> how this problem actually manifests itself in the
> future.
>
> Thanks!
> Michelle

Michelle
May I first say how gorgeous little Jessica is. My daughter Stacey who is now 3 had exactly the same movement, I noticed it one evening when she was in her cot. I dont know the severity of Jessica's injury, but as for Stacey I am happy to let you know that after that hand to mouth movement Stacey just kept on improving. No surgery has been required up to this stage but we do see the orthapaedic surgeon next week. I will say a prayer for Jessica tonight and for all our little special children. My thoughts are with you!!
Angela