United Brachial Plexus Network, Inc.

My name is Anthony and you rarely see me post. I have gone through a lot due to my Lobpi, but instead of just talking about me .I was wondering if any parents or teens are wondering what the long term effect could be. Since I have had no medical attention to my arm I am sure I could give you a great insight on the maybe and what ifs ...my email address is Lucid_707@hotmail.com to those who do not want to post a personal question...I am here if you need me.

Anthony

even though I am young I know how it feels to be frustrated and hurt and Im on the receving end! talk to your children and make them feel really special today!

yeh it would make them feel nice to see that their parents care about their injury. that sounds odd but having spoke to Anthony, we were in the same situation (i was until this year) where our parents jst couldnt really care about the injury, or so we thought, maybe it was just hard to deal with for them.

I think us young folk (well anthony your gettin on! lol) can really help parents understand, but keeping in mind that each injury is unique. I definately think we can provide sum kinda service for parents where advice comes in!

So why dont you ask Agony Anthony a question! lol Agony Ant! (you should get a column in the outreach!!!)

Jeez i think im goin mad...

Michelle x

i think it is really true that each injury is v. unique.

Yes I have so many questions concerning my young daughter. She is now 2 and 1/2 years old. She was injured at birth her right arm completly paralyzed all but one finger which moved very little. By age 3 months she was beginning to gain function. At age 1 we thought all was well when she got the muscle contraction due to a growth surge. Allthough she seems at this point to use her arm well it is contracted somewhat and she has begun to complain of neck pain. And of course the winging of the shoulder blade. What can we expect for her future with this arm? I am so concerned for her future. All alone with no one to talk to about this as well.

Well thanks ! This is Agony Ant hollerin back at ya . All unique in the same kind of way the injury very much alike but peoples or families reactions Totally different! if your older and have the same problem as me your parents probably suffer from an extreme case of Denial! if your a parent Please don't be in denial just get through this one step at a time. Believe me we'll remember..Well keep it live and as always release the Id...

I know your there and I know you want to ask ....so get it over with its OK.

Hi Anthony

I want to know what you are doing to take care of yourself now so that you do not have long term compensation problems?

Kath a very long term obpi... lol...

Just teasing but remember you must really do your ROM exercises and also protect the unaffected arm from overuse...

I would love to do all that but I am on my way to getting medical insurance (Through going to school for phlebotomy and getting an excellent job with superb benefits ....Wats a ROM excersise? I don't know this one actually I don't know any so reply while I look it up you will probaly be more helpful than anything I would greatly appreciate it :>)

Anthony L

I have a 20-month old daughter, also born with a completely paralyzed right arm. She made very slow progress until she was one, and then gained a lot of mobility and strength all at once. I thought that her nerves were healing very nicely, and we stopped going to neurology, ortho, and PT. But now that my daughter is walking, I am worried that her arms still don't work symmetrically. Also, she sometimes says "Arm hurts!" or "Ah-oh, bonk arm!" I also feel very dismissed by Dana's doctors because she is "healing nicely," but I fear that everything is NOT behind us yet. I, also, could use somebody to talk with.