United Brachial Plexus Network, Inc.

Hello everyone,Just wanted to ask has anyone out there with bpi had a relapse after doing well with therapy due to a growth spurt? Such as reoccurence of contractures or winging problems etc? My son is doing well with therapy but the therapist says that his next growth spurt will tell a lot about his development? He still has prominent winging of his scapula and is doing TES every day several times per day. He cannot supinate past neutral as of yet and the therapist seems to think that problem is related to a bone deformity in his arm and NOT to BPI. My son just turned 1 year this month and is doing well with therapy but we are getting nervous and not knowing what to expect. He had Mod Quad in November and therapist says if winging is still prominent after 6 months post surgery....he will probably always have a winging problem but to what extent? also what can we expect from the winging problem as he develops? Sorry so long and so many questions.....learning every step of the way. Thank You all!

I'm really curious about you saying that your son is doing TES many times a day? TES is the threshhold electical stimulation that you do AT NIGHT, all night to regrow atrophied muscle. It's done at nighttime because #1 the muscles are at rest and also because growth hormones are being released all night so the blood is rich with lots of good things. It also gives the brain the sensation that there is an arm and I think there are more reasons, but I can't think of them right now. TES is done with the one unit that is out there called the BMR2000 that was invented by Dr. Pape. It is a unit that is safe to use all night and has a lot of safety features built into it for the kids including shutting off if an electrode falls off or gets wet, etc. Plus it has a lock button so that if a child touches the buttons, the setting won't change.

NMES is the other kind of estim that is done typically with a therapist and during the day and it is done to STRENGTHEN muscle (as long as there is enough muscle to strengthen meaning not as atrophied anymore). And the reason I felt I had to comment on your post is because this type of estim should only be done for about 15 minutes a session and just a few times a WEEK (not every day). The way DR. Pape explained it is that it's like an aerobics session and you would not be doing aerobics a few times a day - you'd only be doing it 3-4 times a week. She said that if you do it too strongly or too much, you can blow the muscles.

About not supinating - this is most certainly a BPI issue as is any bone deformity that will occur in the arm. The bone deformity happens for a number of reasons: lack of range of motion, lack of muscle strength so that the bones aren't being "pumped" blood the way a normal muscle would do it, etc. Lack of supination happens for a number of reasons and there was an article in a UBPN Outreach that was written a couple of years ago that explains supination.
http://ubpn.org/awareness/A2003supination.html
Lack of supination also has its roots in the shoulder where there might be a lot of bone deformity, which is why the doctors have us do MRIs and 3d CT scans. One of the surgeries that Dr. Nath does (I'm assuming that he's your sons doctor because you mentioned that he had a mod quad in november), the Triangle Tilt is what he does to handle the winging and the supination issues. He has a lot of information on that surgery on his site.

I think that a red flag has been raised with your therapist not knowing about the bone deformity related to bpi. It would be great if she could go to one of those symposiums or seminars where she would learn how bpi affects the child in more ways than just the plexus itself. She would probably be very surprised to learn that it also affects the eyes, ears, nails, legs, feet, balance, how the body deals with sweat and sunburn, etc and much more.

It's all a learning process and I'm so glad that you posted so that you can learn more and more so that you can help your son.

Null,
I just thought that I should let you know that NMES can be used every day several times a day. That is what I use to strengthen my muscles. I do each muscle group once or twice depending on how my arm feels every day for 15 minutes at a time. This has given me so much movement and functional use that this past October I was able to put my hair into a high pony tail for the first time ever. I continue to do the therapy and I am still able to do my hair all by myself! Before NMES that was only a dream.
NMES can me used daily but I choose to take one day a week off just because I dont want to do therapy and I have other things that I want to do!
Amy
18 ROBPI

Amy, you are 18 years old and Michael is a 1 year old. Age makes a huge difference. You've had 18 years to grow muscles. When Dr. Pape made her comments, she was addressing families of little ones.

18 years for my muscles to atrophy! The sooner Micheal starts is probably for the best. My muscles were probably worse off than Micheal's are when I started E-STIM this past fall, because I have never been able to use my hand and arm.

I remember having a lot of pain during growth spurts. Terrible aching in my neck arms and legs. The one thing that did happen is that my arms startyed to even out in size a little. The difference became just barely noticeable instead of so pronounced--well except for the droopy shoulder, crooked elbow and missing wrist bone--noones perfect.

You are unlikely to get any strength out of a muscle that is only activated 15 minutes a day, a few days a week. This is *not* the same as "aerobics every day". This is the same as crawling, reaching, sitting, etc... normal muscles are used constantly throughout the day. As long as you work up to it, there's absolutely no reason why NMES couldn't be used several times a day, every day. In fact, many experts believe that you just can't do e-stim often enough to really influence muscle mass and condition. Christopher Reeve FES cycled hours and hours per day, and could barely keep in shape.

Most rehabilitation protocols for stroke victims, for instance, have multiple short sessions every day to increase muscle mass and strength. This is the main motivation for implantable systems... it's a headache to apply and remove electrodes often enough for electrical stimulation to be effective in maintaining muscle mass.

Kate (who used to work with implantable neuro-muscular stimulators)