United Brachial Plexus Network, Inc.

I want to protect my kid's privacy, so I am going to conceal my kid's sex, so I am going to take a male gender here. Everything else is reliable.

My five year old is about six months post-op from the mod-quad. The results have been incredibly amazing. He still has that kink at his elbow, but he is moving it alot. Prior to surgery, I worked with him alot, but it was never apparent to him at some therapuetic level.

Now that so much function has been restored to him, he seems as a very small child, very much kind of obsessed in demonstrating his new function. Everything he does he says, "Look I can do this...Look I can do that." I totally do not understand where he found this intense focus on his new ability. And, the reason why I write, I dread the day when, even with this amazing recovery, he realizes that he will always have limitations...

I personally do not think that some of these kids think they have limitations. My son is seven with Mod at 14 1/2 months and great-awesome results. I don't think that he knows that there are limitations for him and he truly believes he can do anything. We have used the positive approach and I have to be careful as to not limit him in what he does. I like to be over-protective and I probably shouldn't be. I think when the time comes and it does happen you could explain that you did everything you could to make him the best you could and this is what he has to accept. I know that when we went into mod and primary for that fact that is what I was hoping to be able to say that to my son. I know we did the best we did for him and there are some cosmetic things that we could do, but Dr. Nath suggested we leave him alone. If when he gets older these "COSMETIC THINGS"bother him then off to Texas we go, until then I will settle for the 90-95% function that he has .
Gayle Mom of Brandon 7 with OBPI

My daughter also had mq at 14 months. She had primary at 4 months. There are major deficits still. She is happy with what she can do, but is keenly aware of what she can't do (come to midline, supinate). I tell her that there are things that I can't do, that her siblings can't do. There are always things that they will be able to do or not. The amount of therapy that we did, and the level of her injury meant that she always knew that something was up.

However, it doesn't phase her. Honestly, I don't think that she really cares. At ubpn camp in September, she didn't even notice that so many kids had an arm like hers!!

We are not overprotective by nature. I encourage all of my kids to try as many things as possible. One of my children is not permitted contact sports like field hockey or skiing as she has only one kidney. One of my kids has epilepsy, so he has to be watched in the water--but he and his twin sister have just begun springboard and platform diving. His coach is aware of this, and I told him what to look for, but there didn't seem to be any reason for him NOT to dive. Juliana says she wants to try. I don't think she will be able to really succeed at this as her left arm can't generate any power...but I will let her try.

I think that the kids get excited over any new skill (hey ma, watch me roller blade!) and the new movement counts as skill.

If you continue to encourage "him" and give him every opportunity to try what he likes, then the limitations are only as limiting as any one elses. Some kids are great baseball players, some not... Juliana plays in a basketball league now. She can only dribble with her right hand. She also scored all of the points in the game last week. Maybe when she's older she'll develop some "helper" thing for that arm, but at six, she just ignores that it doesn't dribble and beats everyone anyway!

good luck,
claudia

great post Claudia....

very encouraging

Chrystal

The way I look at it is, that everyone has problems and Erbs Palsy is mine... With God's Grace, I have no financial or family probs until now so this is the only prob I have in my life at this age which is not that big of a deal imo...

Imo, just gotta be posiitive about it.. Religion helped me a lot to do this as I became a believer in destiny and that what had to happen, happened. And there is nothing one can do about it but accept it and move on.

I think the most important thing which comforted me was when I realized that I am not the only one who has problems in life. Everyone person I interact with has some problem or the other....

In conclusion, I guess being positive and supporting your kid and making him realize that they are not the only one with a problem ( which is minor when compared to someone with far worse problems )

I apologize if the above rant has elements which are not relevant to the original posters question.

Jai