United Brachial Plexus Network, Inc.

Have a bpi child who have pursued an active exercise/strengthening program between the ages of 4 and 10. I'm especially interested in those kids who have not had any surgical intervention, but I'm sure some of the same issues apply regardless of whether they've had surgery. I would greatly appreciate your insight.

I trying to make some long term goals and would appreciate any input of people who have "been there, done that". Any info on what worked and what didn't in terms of exercise protocol as well as motivating the child and keeping him/her happily exercising.

Thanks in advance. Feel free to post your opinions/advice here or email me personally at chrisandjess@cmsinter.net.

Ill be watching too, wish we knew where Patty was, remember her from Tanyas group? She had a daughter learning to play the harp...with no surgery, but what sounded like a pretty serious injury,

I remember her but not her name. Wasn't she from Wisconsin or somewhere up near me (Michigan)?

hi Jess...

Maia is almost 5 years old and I've been thinking about the same things, planning and such...

I learned a lot recently at the Dr. Pape conference, some of which I will try to share. Of course I have no idea what the status of your child is so I'm going to just share general information.

In order the strengthen a muscle - you first have to have the muscle. So if there is very little muscle mass - due to atrophy - yet it is innervated, then strengthening is not the right first step. Growing muscle must come first, strengthening second and endurance third.

You grow muscle with an e-stim unit called TES - this is nighttime stim. It's a long term project. It brings circulation of blood and growth hormones to the muscle groups that have an electrode placement on them. It grows the muscle so that once that is accomplished and you see some bulk - then you can switch to a strengthening program. (http://www.injurednewborn.com/maia/estim.html)

We then learned that it takes 5000 to 10000 reps to strengthen a muscle. So with this information it became clear as to how important NMES is to our children. Because you can't get to this point by just exercising on your own.

So if your child does not have atrophy and already has some bulk but you just want an exercise program - I would highly recommend calling private pediatric therapy places to see if they have an intermediate gym program for the kids. Some do I have just learned. Basically it's like going to a gym class but the instructor is a PT - and they work closely with the needs of each child but it is a group process. Sort of like a semi-private trainer with the medical background. Cheaper than therapy, about the same price as a personal trainer.

The things that I knew I would do for Maia right from her birth, was to get her involved and madly in love with activities that would automatically involve her arm.... swimming, music (so far she likes drums, guitar and piano). Those are the things you can do on your own - at a Y or a therapy pool, etc.

Dr. Pape talked about the differences in what a child will do between ages 5-8 and what they will do between 9& 12. Between 5 & 8 they are more "pliable" to work with mom and dad and therapist, etc. But between 9&12 they want to be with their peers - so group classes like karate, sports at school, etc. works well for this age group. She stressed karate because it has the dual purpose of self empowerment.

This is "our" plan = well I am still working on it - well I guess I'll always be working on it...lol lol

I took a back room and will be emptying it out and it'll be Maia's little "gym". I recently learned about the link between sensory integration and hypotonia (low tone) so we are getting a therapy swing (if the ceiling proves to be able to handle it). Then on the walls around, I will have different things for Maia to do so that it becomes a little "circuit". I already have a shoulder abduction ladder we can put on the wall and a pully system that we can attach to the door and all types of putties, hand exercisers, etc - that we already use.... I'm just going to put all of our toys in one room so that there's a greater purpose. Also I have a mat already that I"ll put on the floor and we'll be able to take the swing down and do floor work, (there's this great tape called Elliot's Gym that we just saw - wow!) and some yoga stretches, etc. I think it's important that kids know up front that this is something that they will have to work on all the time if they want to reduce pain syndromes for later on and overuse etc.

Maia's first OT said something very astute and it's helped me a lot. She said - as I was sobbing about Maia - not to worry because she said that she could teach Maia how to do things and if she couldn't do it, they would teach her how to compensate/adapt and if she still couldn't do it then they would get whatever adaptive equipment necessary to make it happen - so one way or another Maia will be able to do almost anything.

Doesn't matter if you have a severe injury or not - you CAN figure out a way to do almost anything. I'll never forget one of those news shows I saw after Maia's birth that showed a man driving a truck and he had no arms at all. When I saw that I KNEW for sure that anything would be possible. We CAN get our kids to their maximum potential if we are committed to helping them get there.

(read the post where I list quotes from the 20:4:80 seminar - there's a lot of good stuff in there)

-francine

Hi Jess,
My name is Christy and my daughter will be 11 in February. She has had no surgeries. She is very outgoing and has been in all sorts of activities from age three up until now, but I think she's benefited mostly from swimming. She has a moderate injury of C5, C6 and maybe C7 they think. She has good use of her fingers on both hands but the arm movement itself in her injured arm took a long time to start to develop and happened very gradually. She seemed to quit gaining movement at about age 6 but then this summer at age 10 she seemed to be gaining some more. She can lift her arm over half way past shoulder height now and most of her strength comes from her shoulder and upper arm.

I guess we sort of due "lifestyle" therapy here. We swim as much as possible (daily in the summer and a few times a week in the winter), and basically have fun together. Most of what we do is also family time - like shooting baskets together or playing football or catch, riding bikes, climbing rock walls or even washing/vacuuming a car together.... We don't really need to motivate her - it's all fun and she loves to swim and do things with the family. She is a very active kid. She also has lots of friends who like to swim and have fun so she keeps very busy. I could go on and on but think I'll stop here if you'd like to ask me anything. My personal goal is that she will never feel scared to try anything because of her arm - and so far she has tried everything she has wanted to try - and is now playing basketball and taking piano lessons for the first time.

Brittney's arm injury is not the focus of our lives.
I feel she benefits because of that. Please tell me more about your child too.
Christy

I agree with everything Christy says
eventually kids can get therapied out - my child did and now we have to try and look at ways to exercise the arm without doing therapy.
we have tried - with varying degrees of success;
archery, swimming, basketball, rugby football,zip slides, assault courses, trampolining, martial arts etc and all of them have helped to a greater or lesser degree. the swimming is a constant in our lives and the rest are as the fancy takes our child.
We have fun and our child is NEVER afraid to try anything and we never say "No you can't do that"
everything is always "have a go at it and see if you like it"
I hope the experience of "older kids moms" helps you a little.

Hi Christy

Just curious. Was your child ever told she needed surgery? If so, did you decide against it and how did you make that decidion? Or was the injury not severe enough to warrant surgical intervention?

Thank you for sharing.

As I read this post about different ways to keep the kids moving I thought about my job...

I had to hang clothes on the line... the kind with a pole and pulleys... I had to pick up the cloths- hold it with unaffected hand on the line -- then put the cloths pin on with bpi hand and pull the line away with bpi hand…. ...then do the next piece... it was a way of using my fingers and also getting a stretch... lifting up the piece with robpi hand -- so I got a bit of a stretch up and then when I pulled the line away I got another stretch to the side… also using the clothes pins… both kinds… so I had to squeeze a bit….those I could only use when I got older…
When we are away or at the beach I still hang the clothes the exact same way... even wasting clothes pins because each item had to be separate and each sock and in color order too....hmmm was that therapy or a way of getting me to move.... LOL...
sorry all you guys have dryers and no more clothes lines left... but you could make one in the yard or in the house and wash and hang socks up to dry.... and have the kids use it...

Another Cinderella story...LOL... I thought it was a job...now I realize it was therapy again!!! That is why I learned to iron so young and was only allowed to iron with my obpi hand... I was a bit older but had to iron hankies and scarfs and pillow cases as I got older.... darn she got me again to move... I was a tough one after a while I did not want to be told to move my arm... so my Mom put me to work.... LOL... and I thought I put one over on her...duh...

Kath

Hi Guest, We didn't know that surgery was even an option until Brittney was about eight years old. Her therapists and specialists we had seen up until then had never mentioned the surgeries being done. I know that if she would have been born years later (with the surgeries they are offering now) she would have been recommended for primary and most likely many more surgeries because she had no bicep or much else for so long. I remember at 4 months old she could lift her straight arm off of the ground about 2" when she was on her back and we were so excited - bicep was not there at all yet to give you some idea of her injury. Her progress was slow but fairly steady. We went to TCH when she was eight years old because we wanted to find out more about the options we had heard about - and the mod quad, caps, and bicep lengthening were all recommended. We were told "She'd be no worse off" after surgery - but after more specific questions about what possible losses she could have we decided against surgery. (I think we had different ideas of "no worse off") She is happy with her function level right now. She did not want to have any surgeries. There are things that she would like to be able to do - but surgery doesn't guarantee that will happen and the sacrifices she would have to make - like quiting all of the sports and activities she's in - to have surgery, be immobilized and then later start up on a tough therapy schedule that might or might not improve her function and could cause her to lose function, the frustration of it all for her - didn't seem like a good move since she didn't want the surgeries anyway. Continuing her normal childhood seems like our best option right now - and hopefully when she's older there will be all sorts of new techniques available to help her if she's interested.
I hope I answered everything - please ask more questions if you'd like,
Christy

Poor Cinderella! Kath - I love hearing about ways your Mom got you to keep your arm moving - and still has you moving it! I wish we had a clothes line - that is a great idea. I wonder when Britt will figure me out!