United Brachial Plexus Network

hi i'm michele mom of 16 mos old girl with rbpi, already had primary and nerve transfers going for mod quad next in boston, i have noticed that she has a funny gait when she walkes and the affected side foot turns outwards and almost seems to "roll" on the inside of her ankle, doc says she should grow out of it but it seems to be getting worse, anyone out there been this before? thanks

Yes. PT is really important. They gave my kid orthotics that we kept in her shoes for a while and it got much better but now years later she is still in PT.

the injury that happens at the spinal cord where the bpi happens can cause damage to nerve going down the right side of the body - it did with my son - he has poor balance on that side and muscle tone and foot size is slightly smaller. his ankle also rolls in and we advised not to leave it alone and have orthotic support. - why don't you post this question to Dr.Pape on www.tascnetwork.net and see what she thinks - she doesn't generally believe in just letting poor weak joints flop around as it can sometimes overstretch the already too weak muscles and it may be hard to get them back - also the joints may deform - so you may want a second opinion about that.

Juliana used to walk like a crab!!! We did tons of pt for it and she finally doesn't fall constantly. She is also able to run now.

It is extremely important for you to get pt for this. Your daughter will not "just grow out of it." There is so much compensation that these kids do, you don't want to have an uneven gait to add to it.

While you are waiting for the pt to kick in there are some things you can do at home:
1. put pillows in front of the toys she stands at. Like the play kitchen. The pillows will force her to weight shift, which she needs to do.
2. if you can, get a mini-trampoline. We had one with a handle. You have to supervise, but I would bet she doesn't jump with 2 feet either. They need to learn that.
3. put pillows of different heights and thicknesses under a big blanket and have her walk across it. We actually covered our den floor for days at a time like this! I would pick it all up before my husband came home and would put it back down the next day! If he wasn't coming home, I would just leave it!!! My big kids played on it too. I would entice Juliana with candy. She hated walking on it because it was difficult.
4. fill a kiddie shopping cart with weights and have them push it. They have to push with both legs to move it. We had to tape Juliana's affected hand to the cart or it would just slide off. It never weighed 50 pounds or anything, just a 5 pound hand weight under the toys to make it tougher. She loved the carts at school---they weren't weighted!!

You should get an experienced pt, though. Don't let this just go.

good luck,
claudia

Some how no one seems to understand that it is the entire side of my body that this injury impacted.
Thank God my mother did! I had to practice walking with my toe point straight ahead... so I think it turned out. Walking with book on my head to keep my head straight and of course lots of weight bearing stuff... I was amazed when I had children and did not have to do some of the things I remember doing. I had not idea that it was PT not play until I was a grown up with children of my own... Happy Mothers day to all you great Mom's
Kath

thanks everyone, i'm new to the boards its nice to be able to talk to people and they can relate to what is going on..... thanks so much

At my daughter, Tara's therapy they have these air filled rubber disc like things (not sure what they are called) some are bumpy some smooth - they are about 12-15 inches wide. They each have different amounts of air which forces her to balance and concentrate on walking.
To Tara it is called the "Lilly Pad Game" and she has to walk across 8 or so that have been put in a line. She is only 3.5 so it is quite fun for her.
Since this is a wobbly game she has to hold the pt's hand with her bpi hand only.

I would highly suggest talking to your daughter's pt and even her ortho doc about it. At the least they will be able to follow it in case she doesn't 'grow out of it'.

Good Luck!