United Brachial Plexus Network, Inc.

I have been praying to find something like this site for 10 months. We are from a rural communtiy where there is very little knowledge of BPIs. We have been referred to the Children's Mercy Hospital in Kansas City, MO. DJ is 10 months old and up to this point we thought he was progressing. Last week we were told that he needed the procedure of putting botox in his tricep and then casting him in the statue of Liberty cast. He has alway had the use of his hand but alot of the arm movement is generated from the shoulder. We were told there is a danger of the rotator cuff separating. Has anyone had experience with this type of procedure? We have been unable to get any response in obtaining a second opinion. Is there somewhere else that we can go for specialists?

Any help or support would be greatly appreciated.

Meloni

if you live in MO, there is a dr susan mackinnon in st louis. barnes-jewish hospital.
i dont know if she deals with children or not, but if she does, you might try to get in with her. she is very good.
there is also a list of drs on the resources tab on this site for other drs. dr mackinnon is not on here. but she is one of the best.
sorry i dont know anything about that procedure

good luck with with your little guy. make sure to take care of yourself. that is the most important thing you can do for your little guy.

My son had a nerve graft at 6 months and then a couple months ago had botox into his shoulder because it became so tight for him to function...we had to fight months with the insurance company but we got it approved and we have seen amazing results!!!!Every kids different but with my son he is completely able to lift his arm assisted all the way above his head with no tightness or pain,the cast was hard to cope with but boy....the results were wonderful

Thank you for replying. DJ has not had any procedures prior to this and has quite a bit of natural movement, just not generating from the bicep. He can grip and when the good arm is taped/gloved or otherwise engaged he does try to reach for objects. All the PTs that have seen him say that he has good muscle tone and ROM. Just a bit confused about this particular procedure. Today I was talking to the Infant/Toddler PT and OT from our school and she said that everything she has read about botox is contra-indicated for anyone under 13 but what she was reading didn't neccesarily pertain to BPIs.

Hi Meloni,

There are a number of specialists listed on our resources tab with information about each. We live in St. Louis and currently see Dr. Tung (He works with Dr. Susan McKinnon- Dr. McKinnon only sees adults). We also travel to Philadelphia and see Dr. Kozin at Shriner's. Both are well respected specialists.

We have done 3 rounds of botox for my son. We started when he was a year old. We used botox for expectation. There were movements Cameron did not have because other movements were overpowering them. For instance, he did not have much wrist extension. We botoxed his flexor pronator mass (which was overpowering his wrist extension) and within a couple of weeks we began to see more function. This is definitely not the case with a lot of our bp kids and botox is different for everyone. We have seen excellent results from all of our injections, and he has kept what we gained.

If you would like to chat further, feel free to email me at stlbpi@yahoo.com.

Anise

hello,

We are in the kansas city area and my daughter has been seen at childrens mercy since she was 2 weeks old. I also know another little girl that is a year younger than my daughter and she has had botox twice at childrens mercy with great results both times. Might run into you at therapy sometime. Taylor is having her 2nd surgery on June 7th. Dr. Latz is going in and doing another shoulder release and moving some muscles. She had her 1st surgery May 2010 and we have seen great movement since then, but her ball of her arm has a major flat spot and her arm is now turning inward which isn't good beccause it is limting her new movements.

We see Andrea for OT and Dr. Latz, Dr de Roode and Dr Rinaldi in the brachial plexus clinic