United Brachial Plexus Network, Inc.

We are taking my son (age 6) to Seattle Children"s this summer for camp where the cast his unaffected arm for 3 weeks and does 3 hour m-f therapy. Has anyone been through this camp?

We are doing this in November. Since you will be going before we will, our family will very much appreciate reading your updates!

We wish you much success with this!

I don't have a lot of time because I have to pick up my kids but in my opinion I think it is kind of cruel...it implies the child is willfully not using their arm...and that isn't true...it has nerve damage..it is like an owl can turn his head all the way around...so you should be able to also...go ahead and try it now....you can't because you aren't wired to do that...a child who can't do something because of an injury isn't purposely NOT using his/her arm...so it is cruel to disable them further to force them to do what they can not. Again just my opinion.
T.

In light of what Tessie wrote I want to share something with you. In therapy Maia would try and try and try to make leftie work. Three years we tried and tried. Then she had a surgery and her arm was immobilized in a big splint and I continued her therapy so that she would learn "one armed living". At the time of the surgery it occurred to me that at different points in her life she might not be able to use leftie at all (wonderful foreshadow) so she better learn how to do things one-armed so she can live life!

BTW - up until then we made Maia do everything bilaterally (using both arms).

The day that Marlene showed up and Maia looked at her like "huh? what are YOU doing here?" and Marlene instantly showed her how to open a yogurt container one handed. Maia's face lit up and she said "Do you mean that I'm allowed to do this with one hand??" and Marlene nodded and she went "Yippppeeeee!!!!!" She said that it was too hard to use leftie and it made her so angry inside. From that day on she was SO excited about therapy and had a great time and learned lessons that she uses every single day. And THANK GOD she learned one-armed living because it was just a couple years later that she fell and lost it all and there was no other way to survive.

Next story I want to tell you is that when we wanted her to get back into using leftie when the splint was off we explained to her that since leftie was resting all this time, she needed to exercise again to get stronger again. At that time, Maia was very into Blue Clues. So I pretended that Blues Clues was crying one day and she said what's wrong with Blues Blues? and BC cried and said, I miss you so much when you go to therapy. Can I come with you? And so when she went to therapy, BC went with her and since BC wanted to see up close what leftie was going to do, rightie (uninjured) had to hold him up close so he could see everything. I call that "loving" constraint therapy. Needless to say, Blues Blues came to therapy for a long time and he TRULY enjoyed watching Maia's session from his front row seat with rightie.



-francine

Honestly, as someone with an injury I think this is cruel. It is painful to use the affected arm sometimes and to see it forced makes me really upset.
Carrie
LOBPI, 26

I am the mother of a child, that knew very well how to use shis arm(AFFECTED) but just thought it was easier to do everything without it. So, we used constraint therapy and now that he is nine, both arms are used like they are equal. From a therapist that my husband is seeing right now because of knee surgery : They forget how to use both limbs equally so therefore sometimes contraint therapy is necessary. Did I do it till he became angry, no, I did it till he realized he could use both arms. !!!
GAYLE

I'm sorry, I just find that sentiment so offensive. I don't "forget" that I have two arms. One is partially paralyzed and does not do what the other one does, so I use it less. I'm not questioning what worked for your son, you need to make the right decisions for him, not me. But I'd like to say that, as an injured person, I feel that taking away the function that I do have is cruel.
Carrie
Actually ROBPI, don't know why I said "L." Long day.

To understand the purpose - and scope - of constraint induced therapy, it is important to consider the qualifications and main idea behind it.

To begin, a child must achieve a certain level of recovery before he or she is eligible for this type of therapy. Children who have very minimal recovery are not good candidates, as the constraint would serve no purpose than to needlessly frustrate the child. You are right in that constraint therapy would be a cruelty in that situation. The purpose of constraint therapy is to uncover hidden (yet possible) recovery the child has, but has been unable to access through therapy.

It is also important to look at constraint therapy from the perspective of the plastic brain. Our brains are wonderfully plastic - which we can harness for good. However, plasticity goes both ways. Our brains contain a body map, of sorts, called the homunculus ("little man"). On this map, different areas of our bodies are represented in size by their use. (So our thumbs, for example, are larger than our knees.) Very generally, this is the command center.

When an area of the body - such as an arm affected by a brachial plexus injury - is not used for an extended period of time (such as a period of paralysis), its representation on the homunculus actually shrinks. When this representation in the "command center" shrinks, using the arm actually becomes more difficult - much more of a deliberate action - than using an area of the body with a larger representation. So, the child is not only battling a weaker peripheral nerve signal and atrophied muscles, the child is battling a weaker initial command.

Each of our children recovers differently from this injury. Some children adapt very well as their muscles reinnervate, and with increasing use, enlarge their affected arm's representation on the homunculus. Some children, unfortunately, do not.

We must respect one another enough in this forum to investigate another parent's approach before we call it cruelty.

A little over a year ago, when I first found UBPN, I read another mother's post about constraint induced therapy. At that time, our daughter could barely move her left arm, and could not even feel the majority of her right arm or hand - much less move it. I was horrified! I remember actually crying when I thought about someone's constraining Aria's left arm in hopes that she would move her right. However, before responding, I researched constraint induced therapy. I even called a hospital which trained therapists in C.I. and talked with the head trainer about it.

This is when I learned about the careful screening process for C.I. This is when I learned that a child has to achieve a certain level of motor function before a therapist will even consider constraining the stronger arm. This is when I learned that the children are carefully monitored by a child psychologist - and that if a child shows true signs of distress, the therapy is stopped.

C.I. therapy is not simply putting a cast on the child's stronger arm and having the attitude, "They can use it if they try hard enough." Not at all.

Constraint Induced Therapy is certainly not the right choice for every child, nor is it right for every family. But, it is right for some.

This injury is fraught with parents' guilt. Every one of us here agonizes over what has happened to our children. Every one of us here loves our children to the depths of our being - otherwise, we wouldn't be here - trying to learn, and trying to cope. Leveling the word "cruel" at a parent, who might be making the correct choice for their child (even if it would be the absolute worst choice for yours) is unfair.

Constraint Induced Therapy has its place - and is a legitimate choice for certain children. Please, let's remember that everyone is trying their very best to do the right thing for their child, and that every child's situation is different.

I have not taken the time to sort through this entire thread and carefully examine everyone’s responses. Parents get caught up in the passion they have for "fixing" their Childs injury and sometimes a perspective is left out. I have always felt that the restraint type of therapy is borderline torture, it seems to me to have a certain barbaric feel to it like you cut off the left to spite the right (or vice versa). The poster above me went into detail about screening and so forth in order to justify putting a child through this. I do have a question for parents that believe in this type of therapy, and that is if your child has achieved the level of progress needed to qualify for this "therapy" why do they need to be tortured? If they have the motor skills and range of motion to pass this "screening process" they why not just simply remind and encourage your child every day to use their injured arm. Reward them for using their injured arm, give them incentives to reach out and use their arm. Show them that you are happy with them that they are using their injured arm and just continue to support and remind. As parents Im sure the one thing you all absolutely want from your children is for them to be capable adjusted adults, and in my mind submitting them to constraint therapy and then counseling because the therapy isn’t a good way to raise a adjusted adult. my right arm is injured, i am almost 19 years old i have lived with my injury all my life and my parents never once forced me to use my injured arm but found way to encourage me. I am a capable person, i have adjusted and adapted and sometimes i don’t even remember myself that my arm is injured. I have been teased and picked on in grade school, tortured by my peers for something that i had no say in and at the end of the day i have no baggage or regrets. I love my life and i wouldn’t change a thing, not even my injury because it is part of my identity and who i am. I can tell you right now that if i had gone through this process of "constraint therapy" (if i had passed he screening of course) it would have further damaged my mental ability to cope. It’s like punishing your child because they have a physical injury, one that i might remind you they did not ask for. Sometimes my only allied in the world where my parents, the only people that always loved me no matter what, the only people that could see past my injury and see me. Don’t break that alliance with your children by being just another source of pain and suffering in their lives.