United Brachial Plexus Network, Inc.

My son is 11 months old and has LOBPI. He was 11lbs 6oz at birth. The Dr. completly paralyzed his left arm and broke his right humorus. The trauma killed him, he was born with no heartbeat and no breathing....they did CPR and Intubated him. He spent 2 weeks in NICU.
He had nerve grafting surgery in May and has since his surgery has gained some movement in his arm. He is able to lift the shoulder some and take the elbow from a bent position to straight and we are now starting to see tiny movements in the finger tips.
My concern is that he keeps biting his thumb on that hand. I keep the hand covered when he is laying down or when my eyes are not on him constantly. But he somehow manages to work the covering off. I am worried about this. I have heard stories about children with BPI that have done this that have had to have thier thumb amputated....


if you have any suggestions...........please pass them on.

5 people in my family have actually got a self-mutilating disease called lesch-nyhan syndrome. this disease is horrible. i know how you feel when you see your son hurting himself all the time. there is a mitt you can buy that it is too thick to put in the mouth but soft enough that it wont hurt him. check with a medical supply store. you may have to order it because it is not a common item. it has mesh on one side so the skin can breathe and really thick padding on the other. you can see the hand through the mesh. without this mitt my nephew would have no eyes because he would poke them out. he cant bite his hands because his teeth had to be removed at a very early age. we cannot even look away while his mitt is off and cannot even let go of his hand. i hope this helps. i will try to find out the exact name for them and let you know. good luck and sorry you have to deal with this. i know how horrifying it is. another thing you could do is put a brace on his elbow so he cant bend his arm enough to reach his mouth and he would still have the freedom to use his hand. you could alternate between the two. you could ask your doc for a script for the OT to make an arm splint for you.

My son has a global LOBPI, and last year he started to bite his finger nails on his affected side. He would bite the entire nail clean off on 4 of his nails and half of his thumb nail. This lasted for several months and I tried everything I could to get him to stop. He finally one day just quit and he now has all his nails thank goodness! He was doing this because he was gaining feeling in those fingers. I have heard it is like when your arm or leg falls asleep, and it starts to wake up, but only all the time. The best advice I could could give is just try to keep them covered as much as you can. If he gets sores, clean them with a mix of half water and half peroxide everynight, and put antibiotic ointment on it. Someone did suggest to me to try sewing a glove on his shirts, but I never tried it.

the glove i was refering to is like a boxing glove but it is soft and big enough to not fit in the mouth. the arm splint can be loose enough to bend his elbow but not enough to reach his mouth.

Cameron will be 3 in March and also had primary nerve graft surgery when he was 3 months old. He went through the biting phase as well on his affected arm. He started at his arm and moved down to his wrist. He did not have feeling in the areas that he was biting, so he did not know when to stop. It was very bothersome for me because I did not know how to stop it. His specialists explained to me that he was biting because it was like an itch under his skin that he just couldn't scratch. He said the good thing about it was that he was feeling something in that area which caused him to bite. He stopped and hasn't done it in about a year now. His therapist said they see it a lot in bpi patients and it is normally in the area that they are regaining feeling in. Our specialist did not recommend us covering his arm or hand.

Hang in there!