United Brachial Plexus Network, Inc.

My daughter sometimes walks around loosely holding something in her right injured arm. If you ask her where the object she is holding is, she will have no idea. You actually have to point it out to her, and she'll look at you with a sheepish grin. She "forgot" where it was. You can say all you want that the word "forgot" is offensive. But the reality is that its true. Is there another term that might make it less offensive? Maybe. The point is, if you have to use therapeutic procedures to help remind a child that they have another arm that just may help them out given a try, I don't think that is in any way cruel. My six year old daughter already understands how valuable her therapy is, and has never yet questioned our love for her in it. Maybe the procedure isn't right for everyone. We haven't tried it; my daughter's arm is too severely injured, but I would not tell someone else that it is cruel.

Jameson and Carrie
I have exactly the same feelings about constrain "therapy."
There seems to be a brain disconnect. Our brains forget we have an arm. Obpi children are challenged to do the ordinary beyond their level of maturity to understand. Frustration is our constant companion and one that never leaves. Even as adult we are faced with daily challenges. Each new task brings new frustrations and chances for creative actions. When a bilateral person attempts to perform a new task now matter how simple it is… it just flows and is natural. OBPI must at all time assess the situation and see how best to perform ordinary simple tasks. I can't imagine how frustrating this type of therapy must be for an obpi child.

I would love to hear the results of this type of therapy and perhaps read some medical papers regarding its success rate. I’ve never heard of this type of Camp and wonder if there are medical studies backing up the use of this type of therapy? Most important of all how will help the child’s arm and brain to reconnect? It seems to me that once the nerves are ruptured torn etc that the brain is unable to send the proper signals to make the arms function. If the obpi functions are gained by compensation because of paralyzed muscles it can only cause other problems. Compensation takes a heavy toll on our bodies under normal circumstances. So can restraining the unaffected arm help? After camp is there any proof that children will not go back to forgetting they have an arm or not using it? My arm tires easily and sometimes it’s painful to use it. What about the spasms that many of us have gotten since childhood? What happens at camp when the child is hurting and just can’t use their weak arms? I believe that being different and the frustration levels we, as obpi, face is enough! If someone even attempts to hold my hands down I become very angry… Constraint therapy does not seem like therapy to me, it’s like punishment for something we can't control. I know I would not have passed the test for this type of Camp and I am so happy about that.

I was told that my arm and my brain became disconnected at birth and that is why I forget I have an arm. So many adult/obpi are lacking body boundary on the injured side. If someone walks on my right side I sort of push them off the sidewalk. When walking through door ways I often whack my elbow and watch out if you’re next to me, because I will poke you with my elbow and not even realize it. My niece said once said “come on Auntie, give me one of your great one armed hugs” until that time I did not realize I hugged with only one arm. When someone goes to hug me now I try to remember to use two arms because I can. But I rarely remember or even think to use both. How would constraint therapy help me to hug bilaterally?

I think parental nagging/reminding and support is so important. The world tells us we are different and we are frustrated on a minute to minute daily basis. Why add more frustration and perhaps guilt if we fail camp? Rather than constraint therapy perhaps it would be better to try to retrain and reconnect our brains to those muscles receiving some signal. My mother gave each hand/arm assigned tasks and it was part of my lifetime of PT. Formal Pt was not used when I was young, parents were told what to do and they did it all. I have had PT since I was 2 weeks old

As far as parent's guilt that’s something I was never aware of until I found UBPN. My mother never really shared her pain or guilt with me; I guess she felt I had enough challenges to deal with on my own. I’ve seen her in so many of the great parents I have met both on the boards and in person. I realize now how much she suffered because I was injured by the doctor. She knew it was the doctor’s fault and so did I even at a very young age. Parents have NOTHING to feel guilty about we all know who causes these injuries.

So much of my childhood years are spent with someone touching, moving and telling me how to move. I was amazed when I had children and I did not have to do things with them that were so much a part of my childhood.

Recently I purchased a Myotrac surface emg unit.. I have gained some function I never thought was possible. I believe no amount of restraint therapy could have helped me to reconnect my brain to send signals to these muscles.

I like the idea of giving a child a stuffed toy to hold during therapy … I think that is a much less frustrating way of using a controlled therapy. I’ll bet the child thinks they are in control and they are not aware of being forced to use the obpi arm.

Kath robpi/adult

The word forget is used, but as KAth said, the real word is disconnects from the brain !!!

My husband had knee surgery two weeks ago, in one day his brain "DISCONNECTED" from his leg and after surgery he could not lift his leg. When I called the doctor he told me that he should lift his affected leg while I lifted his right leg, so that his brain would "REMEMBER" that he has two days. A few repetitions of that and I he could lift the leg again and all was okay.

Same Theory !!
GAYLE

I have a challenge for parents who are going to use constraint therapy on their children.

Before you agree to doing constraint therapy, have your dominant arm casted for the amount of time you want to constrain your child. See for yourself what the experience is like but just remember that your non-dominant arm is innervated and fully working while your child's injured arm is not - so you will have it 100x easier than they will.

I'm not joking OR trying to be offensive - I just think that we as parents have no idea what this kind of thing would be like for our kids - even if the adults here tried so passionately to explain it to us (thank you!).

Who has the guts to take this challenge? It's only for 3 weeks.

Francine,

I am left arm dominant. My left arm will be casted at the same time Aria's is. We will go through this camp together.

Some children do very well with reminders and the type of restraint which comes from holding onto a favorite animal, some do not. Rebuilding the body map is not unlike any other type of healing that comes with this injury - some children recover good representations of their affected arms in the homunculus, some are less fortunate in this area.

Each family must carefully evaluate their child's (or their own) specific and unique situation. Constraint therapy is not right for every child. However, it tremendously helps others.

If you are interested in reading more about this therapy, and how it can bring about real and lasting changes in the way the brain and affected arm are "wired" together - check out "The Brain That Changes Itself", Norman Doidge, M.D. There should be copies available at your local library.

Also, google Dr. Edward Taub. He is a pioneer in the C.I. field, with a clinic called the Constraint Induced Movement Therapy Clinic at the University of Alabama. His work has helped many, many children recover better use of their limbs following strokes, TBIs, OBPIs and TBPIs.

There is also a C.I. clinic out of the Kennedy Krieger Institute in Baltimore, MD. Drs. Alan Belzberg and Thomas Crawford (BPI specialists from Johns Hopkins) work with the Kennedy Krieger BPI team. Kennedy Krieger is seeing some remarkable results from the children who have gone through their clinic. You can request more information about the C.I. clinic from the website.

Mica
Thanks so much for all this information. I'll try to read this book in the next few weeks. It might help me to understand the way constraint therapy is used to retrain the brain.
Myotrac has helped reconnect my brain to some of my muscles... I fully understand that concept. I just don't get the casting.... but it's never to late to learn more.

Kath robpi/adult

Basically, C.I. therapy can help people overcome a "learned disuse" (clinical term) of their affected arms (often when other methods have failed).

I always appreciate how open-minded you are about investigating new ideas, Kath. And, I'm so glad you've been so successful with the Myotrac!

Francine- I would suggest not only casting the parent's dominant arm but also a weighted wrist weight and a bubble blow up splint on the non dominant arm.

I didn't mean for anyone to be offended by my original post...I was in a hurry and had to leave to pick-up my kids so maybe I didn't word it well...but I still don't believe it is a good idea to constrain children and I'm sooo glad I didn't do it....Jameson's post is further testament to me that I did the right thing.....thank you son...I love you.

Mica -you are one heck of a mommy. I give you lots of credit for how devoted you are to your daughter's recovery and I understand, because it is a completely different concept (that I'm not experienced at) when your child has a bilateral injury.

I'm always the one that tells parents to do first to themselves what they want to do to their children. Try out the chiropractor first, try out the acupuncturist first, etc. I did all of that with Maia, slept with the TES, did NMES - even had surgery multiple times (except just not for the same reason). And in 2004 I actually got parsonage turner syndrome and lost my left arm for a time right before were concluding our legal situation. And the pain.... ohmygod the pain was just unbelievable.

You will really be able to relate quite a bit with Aria and she will have so much of an easier time (I hope) seeing that Mommy is casted too. Although she won't understand why and I wonder what will be going through her head....

I truly hope you will get the results you are seeking.

Mica,
You are sooo inspiring to me, a Mom going to that length along with your dear Treasure,Aria. Your information & reference for CT is very helpful and explains alot I haven't "gotten" before.

Yes, Kath, we are never to old to learn something new and different! I said , I will never learn to use a computer! I certainly have learned never to say never!

Mica I am really interested in your feedback on your experiences with Ct with Mica. You GO, Girl!

HUGS all around,
Carolyn J
LOBPI/adult