United Brachial Plexus Network, Inc.

Has anyone else experienced any of this??? I am wondering if we might be missing a piece of the puzzle…or if there might be another diagnosis for some of these issues or an uncovered injury. This is what we are experiencing….

Our almost 3 y/o is having feet and leg issues. He is not using his whole foot when he walks...he uses the balls of his feet and the inside of his foot instead. He leans forward so much that he falls all the time...so much that it has become a safety issue. We were recently told that he is not using his stomach muscles correctly and is instead compensating with his back muscles as well as using the back of his legs muscle more than the front. His knees also kind of knock in a bit because of how he is using his feet or possibly the cause of the favored ‘W’ sit (opposite the cris-cross apple sauce.) He had torticollis as an infant and high tone and didn’t sit-up until 11 months. I was thinking that the cause was from the fractured clavicle pain that the docs would not let me medicate him for so he taught himself to hold himself so stiff that it would not hurt. His arm movement is actually really good but it is partly because he has learned to compensate really well.

I would love to hear from anyone that might have had some of these experiences.

Thanks!

Whole body issues are important things to watch out for with this injury, and certainly everything you are describing falls within that category. Our PT discourages the W sitting position and has us physically move our child's legs into criss cross. It's a constant battle, but when she gets too much in that habit we get other things you are describing.

We use an exercise ball all the time, since she was just weeks old (now 4.5) to work on the trunk muscles, posturing, and balance. Have it a bit squishier than you would normally have one. A small one might be a great seat for your child as well. (I use it as a chair myself, it's great!!)

I don't know much about orthotics, but that could be something to look into as well.

Maintaining correct posture is so important for these kids because they have a tendency to drop that shoulder down, which shortens the trunk muscle on that side which then internally rotates the hip, which then turns the knee in, and finally you get the in-toeing.

Makenna is dealing with issues similar to these. But, in her case she walks with her legs bent at the knees and the hips. The PT wants her to do knee toe exercises (ex-the way it looks when a child is praying) and practice reaching up then go back to resting. This is to strengthen her glutes so that she will not try and bear her weight on her quads when she is walking. My guess is that since she was unable to crawl she missed out on some important muscle development.

Find the best PT you can find. The differences in PT are vast. The right PT will help your child through all of these issues and be able to see the bigger picture. There are good PTs and then there are EXCELLENT PTs. Go for the gold! Especially because she is so young and you can start now and stopping bad habits from forming and reverse what's already being done (i.e. "W" sitting).

Susie:
My daughter had leg issues, too. We had a great pt who wrapped her legs so that she would move them more evenly. She would weight bear about 90% on her unaffected leg and foot and the remaining 10% on her affected toe and ball of foot. We had her standing on pillows in front of any toy that she stood up in front of. The pillows made her "weight-shift" and encouraged weight bearing on the affected side. We also made obstacle courses for her.

We also used horseback riding and swimming to help. They both helped tremendously with the falling issues. By 4 1/2 years old she was greatly improved, and by 5 she was running without tripping. She still postures her affected arm when she runs, so she will fall more than other kids, but her leg reciprocation appears normal.

I would encourage the pretzel sit, as the W is not a good position for any kid (my oldest child can still do it--and it makes me ill to look at it!!).

We considered orthotics, but never really got around to it. I found that a really good pt, some alternative therapies (horseback riding), and playing on playgrounds helped the most.

Good luck,
claudia

Hi

Just wanted to add both my girls have issues with their feet and legs. Younger daughters problems were discovered quite early on and she had some physio but my elder daughter who was never actually diagnosed with erbs palsy but who I had SD with and is now 14 has recently seen a physio due to some knee problems.

He confirmed she has mild feet issues (pronation)and some low tone which were causing the knee issues.We are still unsure whether in her case it was birth related but does make me wonder.

Jayne

It is not unusual for there to be problems down the line from the bpi - it has been demonstrated on mri s where the injury occured the nerve tissue that travels down past the injury site on the spinal cord can also be affected - causing problems in the legs and feet - my son also has these problems especially balance on the bpi side.

Our daughter, Nicole, did some toe-walking and walking on the insides of her foot when she was under 3 y.o. She has weakness in her upper trunk and used to W-sit. We worked hard on stopping the W-sit and instead encourage alternatives like sitting criss-cross or side-sitting. At 5 yrs, 11 mos, my daughter hardly ever W-sits anymore. It is still difficult for her to sit criss-cross for too long. In school, I've encouraged her to start off sitting criss-cross when the class is to sit like that and then to change positions when it becomes uncomfortable. Nicole's preferred position now is to sit on her legs (legs bent at the knee with the feet below/behind her bottom). She has also had balance difficulties. We find "balance beams" wherever possible (curbs and other similar surfaces that can act as a balance beam) so tha we can make working on balance fun. Also, she takes ballet and I believe that helps with her balance as well as with stretching her legs. My daughter had torticollis as an infant too (that was resolved before 1 y.o.). We have found the BPI to be much more than the arm/hand. There are lots of residual effects of the injury and various compensatory strategies. Things should get better if you just keep working on it and be patient. It takes time.

~Tina

We had lots of balance issues with my daughter as well. the Big ball and turtle shell for our home program have helped a great deal. I would echo what others have said about having a good PT help you address it. Our Pt's have been great about seeing how it impacts the entire body, not just the arm. Things will creep up from time to toime to as your child grows. We thought we had adressed many of the balance issues until my 4yr old was learning how to skip at school. Many of the same issue reappeared with the skipping.

Skipping! Cara - that rang a bell - what a mess - we worked on that for a long time. Brittney was behind in that. Her balance actually is still off though but she can skip now! She also could not do the 'balance beam' in her tumbling class. She also wore special pads in her shoes for a while because of her feet and walking on her tip toes (I forget now what they are called) just always seemed to be something that the therapists were recommending. We also have a big yellow ball that we used to do therapy on at home - they'd even allow us to take toys home and bring them back at our next visit! Brittney is now 13 and her balance - well.... she tripped twice in a soccer game this weekend with nobody around her - jumped back up though! Her famous quote, "I believe I can fly" as the coach is yelling - "way to take one for the team again!"......
Balance, feet, and leg issues can be there - but if you keep working at the balance it does get better - we have no more feet issues now, and she has not complained about her leg in years.
Christy