United Brachial Plexus Network, Inc.

Hi. I tried writing this before but I got a message from the administrator that the post contained links to illegal or pirated software which is weird because I didn't put a link in my message. Anyway, my son Gavin was born in May and surprised everyone by weighing 12 pounds. Needless to say he has a moderate to severe BPI of the left arm. We have been doing OT once a week since he was 2 months old and ROM exercises daily. We just had a meeting with Dr. Nath who just looked at him and immediately said he needs surgery. It was a really weird meeting because he didn't touch Gavin's arm or even ask us to take his shirt off so he could see his shoulder. Not really sure of what I think about him yet. We met with Dr. Adelson at Phx Children's to discuss nerve surgery. He wants to wait about 6 more weeks to see if Gavin's movement improves any more before we decide on surgery. At this point I am a basket case! I cry all the time because I truly thought he was going to make a full recovery without surgery. I am desperate to get 2nd and 3rd opinions from other doctors. We are willing to travel. Does anyone have any names and locations of doctors and/or surgeons that they love. Has anyone been to the Shriners in LA? Thanks so much!

Jenn- Tempe, AZ

Does Gavin have any use of his BPI arm?
My son was born in May of 2003 also weighing 12 lbs. He had his grip but that was the only movement he could do with it. I was told that his motion would come back after 3 months, but he didn't actually start moving his arm until October. We did therapy, chiropratic and massage in the years that followed and didn't have any surgery until he was 4 yrs old (after we discovered that his left elbow was dislocated as well). We went to U of M Hospital in Michigan. They have a whole BPI board. He is now 7 1/2 yrs old and has about 80% use of the arm.
But my advise is always get at least a 2nd opinion. A good doctor would have no problem with that either. Wishing you the best.

Hi, I also agree with the second opinion. There are many specialist's out there. I always went for a second opinion b/c surgery is a big deal. They have a section on this website that has information about doctors. My son has been seen by Dr. Kozin, Dr. Waters, and Dr. Nath. I believe it is very important to be extremely comfortable with my decisions when it came to surgery for Nicholas. So, if you aren't completely satisfied I would recommend a second opion. I'm sure you will make the right decision for Gavin. Sometimes it just takes some time to meet with a couple of doctor's and then making a decision. You will know what's right for your little one. Hope this helps.

As far as I know, Shriners in Los Angeles does not have a doctor who performs any of these surgeries.

Kate

Gavin has some movement in his arm. He has brought his hand to his mouth but he gets the back of his hand, and he doesn't do it very often. I have also seen him bring his hand to his eye twice. I always get so excited when he does it but the OT says they aren't quality movements because of the internal rotation. We have a surgery date of Nov. 2nd here in Phoenix but I really wanted to go to Shriners to see Dr. Kozin. Dr. Adelson and Dr. Nath have just started a BPI clinic at Phoenix Children's Hospital and I know they both come highly recommended. So I am trying to decide if I should just do the surgery with Dr. Adelson or postpone it for later in November and go and see Kozin to see what he thinks. It is so scary to have to make these types of decisions!

Thanks for the advice!

Jenn

Gavin has some movement in his arm. He has brought his hand to his mouth but he gets the back of his hand, and he doesn't do it very often. I have also seen him bring his hand to his eye twice. I always get so excited when he does it but the OT says they aren't quality movements because of the internal rotation. We have a surgery date of Nov. 2nd here in Phoenix but I really wanted to go to Shriners to see Dr. Kozin. Dr. Adelson and Dr. Nath have just started a BPI clinic at Phoenix Children's Hospital and I know they both come highly recommended. So I am trying to decide if I should just do the surgery with Dr. Adelson or postpone it for later in November and go and see Kozin to see what he thinks. It is so scary to have to make these types of decisions!

Thanks for the advice!

Jenn