United Brachial Plexus Network, Inc.

Hello,

Our OT suggested I checked the message boards, which I have and so I am going to post. My daughter is going on 4 years of age in June. She was born with a total avulsion of the C6, C7, partial C8 with Horner's syndrome. She has had two nerve grafting surgeries at 4 months and 8 months and a glenohumeralosteotomy at 2 1/2. She can now raise her hand to her mouth, has finger flexion when her wrist is held in neutral position, but otherwise her wrist is completely flacid. She also has no control over her thumb at all. She has no tri-cep to think of. Has anyone else's child had this kind of problem and if so, what kind of treatment was recommended? The recommendations for us after the 3rd surgery was wait and see.

Any help anyone can give would be greatly appreciated.

My son Frankies wrist is the same way when he started to crawl and move about he would lean on it with the back of the hand on the ground so you have to watch it doesn't get broke we had a splint made to protect it and help with positions for weight bearing and crawling. Also we needed a splint to protect his wrist and forearm at night we found that out the hard way when at 10 he rolled over on it while sleeping breaking the wrist and right above the wrist right in half. now at 14 after the Mod Quad he has more control over his wrist but still wears a splint for sleeping or sports. How this helps Mare

I've spoken with some parents whose children have had tendon shortening surgery on their wrists to help with this problem. I have also heard of some who have tried e-stim on the wrist extensors.

Our daughter is 7 weeks post primary surgery, and we know her wrist is a potential problem area for her. I truly hope you find something that can help!!!

Hi my son Matthew has the same thing on his right wrist.We saw Dr. Nath when he was just down here in Fla. for a bpi picnic on Feb.21. He was worried about Matthews wrist because it is down and flacid, his thumb is in towards the middle of his hand. He has finger movement even with his wrist down. So this is what he has sujested; first we have to do serial ( not sure if that is spelt right) casting from just below the nails to just befor the elbow. We go next wednesday to have this done. They will take the hand and push it up as far as it can go and put the cast on to hold it in that position, then every 2 weeks they will push it up farther, till it is loose and in I think he said a 40 degree angle. When that is done and the wrist is loose Dr Nath will put a stich in the wrist to hold it that way for a year, then he will do the tendion transfer( which is takeing the strong tendons from the bottom and putting them on the top.) Dr Nath said that he does that operation when the child is 6yrs or 7yrs old. Matthew will be 5 in August. So I hope this helps you a little bit. If you would like to e-mail me some more you can do it at Jags1420@yahoo.com . I am just starting out with this one, Matt already has had the primary surgury and nerve graphing at 4month and the mod quod the day befor his 1st birthday. Both were done by Dr. Nath in Houston Tx. Dr. Nath said that Matthew will be in a cast for at least 6 months, I am hopeing for less than that but we will see, because every child is differant. Dr. Nath also told me that some times it does not work the first 6 month and then we would have to start all over for another 6 months. I really hope that does not happen.

Jody (almost 3) has a flaccid wrist also. His OT sized him and got a Benik brace. It holds his wrist still and the pressure is also comfortable to him.

Marlyn mom to Jody- who will be 3 on May tenth!!!

Hi everyone,

My son Amaru, 4 months (ROBPI)also has a flacid wrist and his thumb tucks into his fingers. His fingers twitch every once in a while but he does not open and shut them. His wrist will tense up when he is crying but that is about it. I have been wondering how him rolling over or trying to sit up, crawl would do to his wrist. Reading this makes me much aware. Thanks and if anyone has any suggestions let me know...mca129@yahoo.com

Maria

Hi, I am Angela, mom to Jill now age 23, born Severe LOBPI.

I used e-stim. It did work for Jill. WAY BACK THEN, it was a struggle finding someone that would help me with it, but I managed to at a Hospital 60 miles from my home. I had researched and found e-stim was a NEW idea in Germany, to be used on Kids like my Jill. I went and should many places my printed findings and finally I found a place.
I took polaroid pictures of where to place the pads and we used it every day at home. IT WORKED for my Jill. Jill also wore a brace to help hold up her hand, so it wouldn't dangle off her wrist. I asked the O.T. to make it so she could use her fingers.....the O.T. thought I was crazy, since Jill couldn't move her fingers, but I convinced her to MAKE IT anyway. Success there too.

Keep on Keeping ON.