United Brachial Plexus Network, Inc.

I really appreciate the kind words! Thank you!

Sarah, I hope you and your son have a wonderful experience at Seattle Children's!!!

I have to comment on this... From an injured persons perspective, I do NOT believe this is a bad idea for a lot of people. If the child has no hand to mouth, then yes, this may be considered cruel but if like Mica said they have to qualify for the therapy then I dont see any problem with it as long as the kids are not getting so frustrated with it.

After reading this post, this is a type of therapy I would even consider for myself. Here is why: This therapy could reconnect my brains thoughts with my arm and make life just a little easier that would be amazing! It would be amazing because at the very young age of 21 I am rapidly losing function in my left (good)arm. Simple things I never had any trouble with before are not getting very painful to do. Just today, driving back to school...Oh my did my left arm hurt! I actually had to drive with my left knee and right hand. Just so my poor left arm could have a break it hurt so bad!

At 21 I never thought I would lose use quite so fast in my left arm. So constraint therapy no matter how hard it might be could give my left arm the break that it needs and help me figure out my right arm.

I look forward to seeing the results from those that are going through with this therapy. Please do post your results!
Hugs,
Amy 21 years old ROBPI from MN

I live in Settle, I would also like more info on this camp. please email me. shannonmariegreen@hotmail.com

WELCOME, Shannon to the UBPN Family.

All of us in the Seattle area ned to meet at a Starbucks(they are easy to Spot!) on I-5 soon before life gets realy busy in the summer. I suggest Southcenter.

Any takers?? ...keeping it informal... I wil also post this on the BPI Events Forum.

HUGS,
Carolyn J

My son actually after a nerve graphing surgery has a good deal of function. His is mostly a strenght issue that is causing his delays. He just doesn't think about using it enough. He is actually excited. I do appreciate your oppinion. It is refreshing to here things from different angle. I totally see where you are coming from but I think in our particular case it is something Imust try!

I also think there is such a great chance since i have an active boy that he may break his non injured arm someday and be forced to use his righty with out therapy. I can see how it would be cruel for some kids, but not at all for my child. I would never want to have to explain to him later in life why I didn't do everything I could to help him. We can always back out if it becomes too much. I have never limited or treated my child like he was disabled. I firmly believe that has helped him recover as well as he has already. He taught himself to crab walk, just learned to tie his shoes and tells me I just want it to be stronger. He is so excited plus he has never met another kids with obpi so I think that will do wonders for his spirit. Good luck to you all with your decision process. I will send on the information to the ones who requested it!!

Sarahmae,
Hi there... boy you sure brought up one of the hot topics here on UBPN. I really feel for you and I hope you are not too hurt by the opinions of other people. I know this topic well, both the Constraint Therapy and the flaming that can occur here for it. I also did it with my son.

Ours was not through the Seattle Children's hosptial but though our local OT. Ian was casted from shoulder to over the finger tips for three weeks on three seperate occassions. And he also did instensive therapy. The therapy is so neccessary. Once we did it without the extra therapy and it wasn't nearly as effective.

I was told pretty much all the things you have read here on the thread... that it was cruel and unkind and that I should listen to what one of them was saying because they were speaking for my son since they were injured they would know. Honestly posting it on here was much more tramtic than the actual experience. My son didn't even really seem to notice the cast.

My son was 2 and 3 when we did the Contraint therapy. And I prefer to call it encouragement therapy... it's better to focus on the positive! Ian did great with the cast. Once it was on we just went about life as normal but of course adding more therapy play. The cast was way better than reminding him to use his left arm or having him hold something in his right, or putting on something that could come off, or tucking his arm in his shirt because he was still able to move the arm and wave it around and he was even able to find ways to cheat. But typically he would try to do something with his unaffected arm and couldn't so then he would try to do it with his left. Most often he could. And if he couldn't we were there to help him. I can't recall a time that he was frustrated or annoyed by wearing the cast... well other than having a ton of people ask him if he broke his arm and having to explain his injury to complete strangers.

We stopped doing the encouragement therapy when my son's skin started to become irritated by the casting materials. And also because as we had a new baby having all the extra therapy was not as helpful. And as he got older it was harder on him because he was independant in all things but after the cast went of we had to help him dress and use the bathroom. I don't think that annoyed him much but it was more work than I felt I could do... so we stopped doing it because I became lazy.

Also I think this type of therapy is helpful when done a lot not just a little. We found that he did gain a lot but lost most not all but most of that gain after a period of time.

Recently we have considered the idea of doing the therapy again but I am not sure if I would do it to him now that he is older. Now at his age (7) I think it could be more of a frustration to him than a help. But we have talked to him about how this could help him and that if we need to try it we should. Especially if it helps him to avoid surgery.

I am happy to share more about the experience we had with it. Feel free to e-mail me or send me a private message.

Keep in mind that every child's injury is different. That is why some have surgery and some don't. Their abilities are different as well so for some kids I do think this could be a very hard thing and when responding parents also only see their kids in that place and have a hard time doing it.

Jameson,
I have cut and pasted your post into my message. You asked a question directly to parents who believe in this type of therapy, of which I am one and I would like to comment to it and maybe to some other comments you have made. I have bolded your words... mine will not be bolded.
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).Do you feel the same way about eye patching? This is a practice that has been in place for many year. Patching the stronger eye to force the weaker one to work harder thus cause the eye to get stronger? From where I sit this is the same kind of thing. When the child has to use the other arm and not give up because it becomes hard then the arm becomes stronger. Sure some will give up because they can't do it but I know my son could do it... my son didn't then and doesn't now like to do things that are hard. He only wants to do what is easy. Aren't most all humans the same way. We most often want to take the easy way out. 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? My first comment is that I do not agree with your assement that this type of therapy is torture. So I would be happy to answer the heart of the question which I think is if a child already has the function to qualify for this type of therapy why do it? And for us the reason was to give our son more. And to help him not lose what he did have. To help him attain all that he can and keep what he can. It is much the same reason parent put their kids through all of the surgeries and tons of different kinds of therapies that we use. We want to help them gain more and hopefully not lose anything either. 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. It just simply isn't that easy and quite frankly it is tiresome and not very effective. I am sure it works for some but I know unless am constantly over my son's shoulder he will do what comes easiest. There is much of the day that I am doing other things so constantly reminding him is not always possible. And to top that off the contstraint therapy worked better than my words every could. 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. Just because we use constraint therapy doesn't mean we don't do anything else. Of course, we show them we are happy and we give them incentives to want to use the injured arm. Contraint therapy is just one of the many types of therapy that people can and do use. 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. This comment is presumptious on your part that a child will have to go to emotional therapy because of constraint therapy. It doesn't compell me to consider your opinion it just makes me feel defensive, annoyed, and attacked. Personally I don't believe or see that my son has been mentally damaged by our decision to use constraint thearpy. This might be different if he were older and had already decided that he wanted no part of it but in my experience my son was just fine with it. 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. Personally I perfer to call constraint therpy Encouragement Therapy. I do encourage my son. And he is doing very well. Most people don't even have a clue that he has an injury. 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. Oh and we didn't ask for them to have it either. Really this is a moot point in my opinion because I really don't think you can say for certain how going through it would have effected you. Sure you can guess but really it is just a guess. As we have seen from other comments that there is at least one BPI adult who thinks she could gain something from this. So I think the outcomes(even the long term mental ones) are going to vary. 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. Just because I use a type of therapy that isn't the most "comfortable" doesn't mean I am not my child's ally. Gee Whiz if that is breaking an alliance then making him wear his splint and eat green vegetables would break our alliance. Sometimes parents have to make their kids do things they don't like. And especially at the young age that my son is I am much more than his ally. At this point in his life and I and his father the ones who have to make the decisions for him. It isn't easy either. It is hard to know what is right especially when we have so many options and when you realize that we are making decision for him on all matters not just his arm. He is not mature enough to make most of the decision in his life. In reality if I gave him all the power to make the decision he would not even be doing any kind of therapy or anything related to helping his arm. And if he didn't he would lose a lot of function. There will be a point when he gets to take over but right and for a while he doesn't have that option. I havemy child's best intrest in my heart. I am not just out here trying to be mean or hurt him or whatever. I really do want the best for him. I love him more than you could ever know. And I want the absolute best for him now and forever!

Blessings,
Kristie

We did a smaller scale version of this with our daughter. She had a constraint cast on for three weeks but went to therapy one time a week and did home therapy the other days. We felt it was successful. She never seemed bothered by it. I think this was a great treatment approach due to it being non-invasive and non-surgical. It was also low-stress for her.

I'm a bit surprised by some of the comments. I didnt find the process barbaric by any means and actually felt it was a gentle and respectful way of dealing with her injury.

She had the cast on 24 hours a day and did all her regular activities as if it were no big deal.

I think the bottom line is that if this type of therapy is torturous to your child, don't do it. BUT I think a lot of people project their very adult attitudes onto their kids, and prematurely assume that it will be very difficult on their children.

Most parents, for instance, also go into their child's first surgery terrified that their child is going to be furious or depressed when they wake up with one arm immobilized. Most of us are quite surprised to find out that our 1-2-4-6-year old kids barely even seem to notice but just get on with their playing (after the anesthesia wears off) as if nothing at all happened! Kids are so incredibly versatile and adaptable at this age, they surprise you. If they surprise parents who have known them all their lives, of course this is going to be surprising to a non-parent observer (that's you, Jameson!). And I actually think that periodic restraint therapy, done in a way that it does NOT seem related directly to the injury or imposed by the parents (as in, go in for a cast and it just "is" that way for a period of time), might actually be healthier psychologically with respect to the injury than constant reminding of the child to use their injured arm and thus constant reminder that there is something wrong with it. I think if we were to do it with Joshua (now 4) I probably would not link it to his injury at all, but rather just another strange way the world works and that is just the way it is (kind of like going to the dentist and getting shots... you don't do a lot of explaining at this age, this is just the way life IS).

I don't think he would find that approach tortuous at all.

Kate