United Brachial Plexus Network, Inc.

We just returned from the specialist tonight. It was a long drive and tough to keep an active 13 month old happy in her carseat. This was our follow up visit from 3 months ago. I explained my concerns about Juliette still not using her right arm. She articulates it well and uses her hand for holding objects, but she doesn't use it insinctively ie. when falling she doesn't bring it out. The dr. said that although her nerves are healed at least 95% her brain has switched automatic functioning off. Also she seems to have less strength in the right arm and rarely uses it to push herself up. We are very happy that she can raise the arm and give hugs and wave but still extremely concerned. The strides she has made these past 7 months are amazing considering her arm was completely immobile up until she became 6 months old. We were told to continue to encourage her to use her right arm and if the functioning is still significantly impaired that a tendon transfer could be considered at some point in her early childhood. Sometimes it's all so overwhelming and I get tired of well meaning friends and relatives saying "You can hardly tell there's anything wrong with her, she'll be fine." While I appreciate their sentiments it makes it seem that her injury isn't something to be taken seriously. This site gives me alot of support, I love it.

Hi Pamela,

I am new here and the advice that I got was very helpful and gave me hope.My daughter is 2 and she can't do things like scratch, touch her face, and she hates to weight bare. She is a GOD sent angel. I was told that I would not be able to have anymore kids. I proved them wrong and she made her entrance into this world 2 years ago. Just try to remember friends and family mean well, they just don't understand what we are going through and that we tend to be overprotective sometimes I am glad to hear that your child is making improvements.

Dylecia

Hi Pamela - that brain connection thing - this is called apraxia - the brain forgets that there is an arm and it has to be reminded over and over and over until it 'gets it' again. With Maia who will be four soon, there are certain things that are now automatic but then there are times when it's not. So it's something we keep on working on.

We remind her that the games she plays are two handed games or just a leftie game. We make sure that her arm is used in front of her a lot so that she can make eye contact with it.

Sometimes she is holding a toy in her left hand and then she races around the house crying that she can't find her toy. Then I have to reach down and show her what's in her hand. It used to be sad, but now we laugh at it. The adults tell me that this is a common problem they face.

It's also good to work on sensory issues - rubbing her arm with all kinds of different textures, fabrics, brushes, etc. All this helps the brain figure things out.

About the save from falls - we had great success with a PT who taught this to Maia and worked at it until she understood (or her brain understood). We did a lot of work on an exercise ball - sitting her on it or laying her on it and tilting her to simulate falling, etc.

I know what you mean about friends saying that she looks fine. I've become used to looking back at them and saying, yes - it's a lifetime issue and it's more than meets the eye.

I hope this has helped some,
do you have a picture of her that you can email me for http://www.injurednewborn.com ??

keep on asking question,
francine