United Brachial Plexus Network, Inc.

My 20-month old daughter was born with a paralyzed right arm. She very slowly regained some movement and coordination until she was one, and then shot off in her development (rolling over, crawling, walking at 18 months, etc.) Her doctors (neurologist, ortho, PT) have pretty much written her off as "recovered" and "functional." How can I be sure that this is true? Dana feeds herself with no trouble, manipulates objects, has a good ROM, etc. Her strength is improving. But she doesn't use her affected and unaffected arms symmetrically. They move differently when she walks or runs. She also occasionally says "arm hurts!" or "ah-oh! pinch arm!" Could she somehow be in pain? Does this sound like good recovery to you experienced parents? Should I stop worrying about this and just be grateful for her tremendous improvement?

Holly,
Yes be grateful for her tremendous improvement because it is wonderful and a sure blessings. And do stop worrying since worrying will only stress you out but don't stop seeking for more for your daughter. I recommend having her see by a few BPI specalists. There is a medical resource listing on the home page that will help you to find some great doctors. I think it is a good idea to get a few different opinions since view often vary in this field.

What doctors view as "recovered" and "functional" is typcially what most parents see it as. Find a therapists that are willing to go the extra mile to see continued improvement.

Kid with BPI can experience pain. It is a real issue that should not be ignored. Some have more than others and no one knows why this is but it is not uncommon.

Feel free to e-mail me if ya would like to chat more!
Blessings,
Kristie

I think your "gut" feeling to question whether your daughter's bpi injury is resolved is sound. From what I understand, there are children who seem to be ok at a young age but, as they age and are required to function at a higher level, begin to show deficits. I would recommend you seek the advice of a bpi specialist (where are you from?) and continue with as much therapy type activities as possible, especially those that build strength and require symmetry (swimming, running, bike riding etc. as she ages). I think swimming is the best all around exercise for our kids. Do you have access to a pool year round at least 2x a week? Encourage her to crawl to bear weight on that arm. I would monitor her progess closely to make sure she is progressing rather than losing function. Watch out for compensatory movements; be sure she is using her arm/shoulder/elbow/hand etc. correctly all the time.

I look at this injury as a life long concern, especially up through puberty because the child is growing and should be gaining function.

I hope your daughter continues to show improvement!

Holly,
I have two children with bpi. Melanie was diagnosed as recovered at 9 weeks. When I took my son to a follow up visit with his neurologist I had them check Melanie out. She cannot reach behind her head all the way. I started stretching her once a day and now she's doing ok. I think it's really important to keep up the roms even after they've been diagnosed as recovered. Once nerves are injured they never go back to be the same.
Cindy

Kristie,

Thank you for your sweet response. I do think that you are right: the right therapist would see "recovery" as the same thing that I do. I feel bad that Dana hasn't been doing any therapy for the last could of months, but hopefully we can pick up right where we left off.

Blessings to you!

Holly

Karen,

Thank you for your advice! It is so nice to know that somebody is out there for me.

Do you know where I could find more information about kids with OBPI who seem okay at a young age, but then show defecits as they get older and are expected to function at a higher level?

We haven't seen a BPI specialist. We live in San Diego, and I know that there are a couple of them in Los Angeles (just a few hours away).

I could have access to a pool every day if it would help Dana, but she is only one. Do you think that babies can be taught to swim using their arms symmetrically? I'm intrigued with the idea.

Holly

Cindy,

How old was your daughter when the neurologist noticed that she has some remaining problems?

Do you do the ROMs all yourself, or are you still taking both of your kids to therapy sessions?

Good luck to your little family.

Holly

Hi Holly,
My name is Christy and my daughter Brittney has a left arm birth injury. She is 11. I wanted to comment about the swimming. Brittney was a baby when we started her in the pool - just having fun. I'd take her almost daily and the family would go sometimes nightly and always on weekends. As a baby I noticed how she'd try to use her arm in water and how it gradually became stronger. I was worried for safety for her so I taught her how to back float to get air and how to tread water and keep her face up. This is a gradual thing and although she had no fear I do not feel that she was floating really until she was about 2-1/2. (Of course I was always right there with her!!)We bought a little outdoor pool when she was a baby so that she could play at home too. She'd play for hours with cups, boats, and balls - pouring, splashing, crawling - all in the water having fun. I put her bath ring in the pool to help her sit up when she was a baby. When she was old enough she started group swim lessons - plus some private lessons. Today she is a competive swimmer with 4 years swim team experience. She loves to swim and it is so good for all of her muscles - not just her arm. Anyway - I think the earlier you can get your baby used to water the less chance the baby will have to fear it. To me the water has helped Brittney more than anything else, and it's fun!! It's never too early to play in water - Brittney was 3 months old when we took her swimming for the first time.
I hope I helped,
Christy

Holly,

Melanie was about 3.5 when he noticed the problem. He said that the problem has always been there she just never had the need to do those type of movements for us to see it.

For Melanie I do all the roms myself, Matthew's pt is keeping an eye on her for me. Matthew goes through a bunch of therapy a week and we do roms formally two times a day.

Cindy

Dear Holly, awareness of what you can do, while your child is playing and so forth , I would think, would be wonderfully helpful
I feel like even with obvious ...difference in functions(like my son hasbetween one arm and the other) it is not at all helpful for me to focus on what my kid cant do and what 'might ' go wrong or happen, its \definately not what works well for me, I guess what I am saying is we take the 'good recovery' ball and RUN withit happily!!!!
To me, the more medical tests and interventions, even ifthey are diagnostic, renders my child moreso at risk for possible questioning and inacurate diagnosis, since EVERYone has something dfferent to say, theres so much to focus on in the world that isnt OBPI oriented, thats what we do, and just keep the arm active and well ROMed...