Hi, I just found NeuroTalk while searching for answers for my grandson. He was born with a brachial plexus injury to his left arm. When born he had no use of his left arm, he had Mod Qad Surgery at 18 months and has about 75% usage now. At 2 years old he was diagnoised as autistic, he is non-verbal and unable to tell us what is wrong.

Recently he got the DX of CRPS and appears to be in termendous pain. The pain seems to be spasmatic, it comes and goes. If he gets cold it is worse. He stands on his head which puts pressure on his neck and shoulders to relieve the pain. I was searching to see if he might have scar tissue on/in/around the brachial plexus that could be causing the pain. It is very difficult to find Dr.'s who will take him on as he is non-verbal and can not tell us what is wrong. I was reading about Brachial Neuritis when I found this page. He is now 8 years old and any information would be greatly appreciated.

Hello there and welcome to NeuroTalk. I am so sorry that your grandson has all those problems to contend with. I wish I had the answers for you, but sadly I don't.

Do check out our RSD Forum. I can't guarantee that other members have experience with children, but I'm hoping that some-one there can help you. Here's the link: http://neurotalk.psychcentral.com/forum21.html


I'm wondering if it maybe also be worthwhile checking out our TOS (thoracic outlet) forum too. I'm not sure they will be able to help you, but it's worth a try. Here's the link : http://neurotalk.psychcentral.com/forum24.html

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here, you will see we are supportive and relaxing place. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Thank you for your support, hopefully I can meet someone who has a child similar to my grandson and become chat buddies.

For those of you who have CRPS can you please explain to me how the pain comes on. This is a new DX for my grandson and he has autism and can not talk to us. We can see that his arm swells up and changes colors and then he starts hitting himself, biting his arm, screaming, and then he stands on his head. The only thing that we can figure out is that when he puts pressure on his head it releaves the pain.

My question is how frequently does the pain come? How long does it last? His seems to be in spasms and after he stands on his head for a while it passes until the next episode. We have 1 - 10 episodes a day and the intinsity is severe. Any information you can give me will be greatly appreciated as he can not talk to us at all.