United Brachial Plexus Network, Inc.

HI, Our one year old daughter has a LOBPI which she had surgery on in november. she had scar tissue removed and had a nerve graft done, she goes to therapy twice a week. But the therapist is concerned because she is not yet pulling herself up into a standing position. she will pull herself up onto her knees but that is as far as it goes. The therapist told me today that if she does not start putting pressure into her feet in the next two weeks that they are going to send her to another therapist for that. I would like to know has this happened with anyone else's children with this injury? Is it common that the kids with OBPI to have to see a therapist for walking also? or do they just pull themself up and walk later then usual. I really thought that after her surgery that everything would be ok, I never thought it would affect her walking. I'm starting to ask myself what else is next that is gonna go wrong. sorry for ranting, it is so frustrating. And most of these therapist don't have children with BPI so they really don't understand what a parent goes through. again sorry for ranting. any advice or sharing of stories would be great. thanks in advance,
Bonnie

Hi, my daughter did not pull herself to her feet until she was sixteen months old. As soon as she could pull herself up, she immediately started to walk. None of the medical professionals involved with her ever showed any signs of worry. They just told us to wait and let her develop at her own pace. It worked for us!

Hi Bonnie,

My daughter Cassidy only started pulling herself up about the time she started walking...which was eighteen months. It is very common for children with bpi's to walk late. My daughter's therapist also became concerned when Cassidy was not showing any signs of walking by fifteen months.Due to Cass's bum scooting she had built up her hamstrings and her quads needed some work so we started doing therapy at home with her....just a few exercises that were fun to do and they really, really helped build up her quads. Try sitting her on your lap with her feet planted on the ground her bum on your legs and say one,two,three up...one,two ,three down...very simple therapy that worked for us....eventually Cass knew what one,two three up meant and she would stand up and then sit down accordingly. I hope you find something that works for you. I was very concerned about Cassidy's walking or lack of and I came to realize that they'll do it in their own time with very minimal help from us
take care,
Dawn mom to Cassidy 21 months ROBPI

Bonnie,

I agree completely with Amy and Dawn. Our kids have balance issues - and often, insecurity about their ability to catch themselves, should they fall. "Standing" on one's knees is much more stable than balancing on tiny little feet. Just like W sitting provides a much more stable base than sidesitting.

Our daughter, Aria, didn't pull herself to standing until 13 months. At 17 months, she still isn't walking on her own. We aren't worried about it - neither are any of her specialists, doctors or therapists. Aria will walk when she walks, and that's just fine.

Like Dawn, we also had special exercises to do with Aria before she was bearing weight on her legs. We also did joint compressions through her hips, knees and ankles. She thought all of it was great fun, and would even lay on her back and stick her legs in the air for us to do them.

It's so hard not to worry when people are constantly in your face with milestones. I'm so sorry that's happening to you!

But, to ease your mind - it does seem to be an OBPI norm.

Kayla is 13 mos (and 5 days to be exact) and she started pulling up 3 days before Christmas (which was 13 days after her first birthday). She is not cruising yet and just sits back down and scoots to where she want to pull up again.

Kayla would let us help her into a standing position so we would play the up/down game. When she stood up we would say "UP" then she would sit and we would say "DOWN". She found this hilarious and served a couple of purposes. It encouraged her to pull up without us...we would just say "UP" if she was on her knees without us and she would try. And we had done it so much by the time she was proficient at pulling up that she didn't get stuck in a standing position and wasn't scared to sit back down.

Ashley, Kayla's Mommy, 1yr, ROBPI