Botox for external rotation & supination (esp for infants & toddlers)

[BPI mom]

Has anyone ever used botox to increase external rotation & supination? I already searched the forum and saw a few posts, but, like the rest of you, I want to be sure I'm doing what is best for my baby. Please share with me both good and bad experiences. Also, I would be interested in what age your child was at the time of the botox, and if you thought their age mattered.

Thanks

BPI mom

[ldeverna]

My daughter had Primary surgery almost 3 weeks ago and also got Botox at the same time. She was 6 months old. Of course, we don't know the effects as of yet as she's still casted.

~Lisa
Mom to Harper, LOBPI, 7 months old.

[BPI mom]

I will keep her in my prayers. Keep us all posted. God bless.

[Vancemom]

My son had a botox injection when he was 4 months old and again was he was 11 months. He was in a cast for 3 weeks each time. The first time we saw more positive result than the second, but I can say today it really helped him.

[Zadynsmom]

Hello, my daughter just had Botox injections to strengthen her bicep and increase her external rotation. She is 20 months old and is LOBPI. We have had an amazing experience with it. She had the primary nerve graft done at 8 months and was seeing good results from that. But, her tricep became too overpowering, not allowing the bicep to work properly. She has never been able to bend her arm on her own before.
We decided to try the Botox after seeing an article in the Outreach Magazine and talking with our physical therapist. We found a rehabilitation specialist who does botox shots on children with Cerebral Palsy and met with him. He researched BPI and thought it couldn't hurt to try, since he'd never done a BPI child before. So we went for it.
A week after the Botox shots, she bent her arm on her own. She could clap her hands in front of her body. Now, she doesn't have full range of bend yet, no a really strong bicep, but we are working on that with physical therapy. She is supposed to be doing a lot omore exercises and weight lifting, but she is almost 2 with the attitude to go with it, so I have to get creative. She can also rotate her hand outward (like if we were to give her "five") so the palm is upward. This muscle is controlled by the bicep. We have been very impressed with the Botox and will probably do it again in 6 months to increase her bicep strength.
I don't know what age your child is, but I would recommend waiting until the child is old enough to participate in the physical therapy that will come after the botox. It will be intense. They will need to be at an age where they understand simple directions from you, like "use the other arm", "try it with that arm", "pick up that ball". Things like that. (just my opinion though)
I hope this helps. Let me know if you have any more questions. I would be willing to let you know anything else about the Botox that I can!

Alisa -- Zadyn's mom

[BPI mom]

My daughter is 10 months old and crawling. I have heard how important crawling is, and I don't want to interfere with what she currently has. From two posts that I saw earlier on UBPN, the children had balance issues with botox. Can anyone address whether they think it will affect her crawling?

Thanks

[ptrefam]

Ok so now I have read about botox several times. It sounds promising. Who is recommending these kids have it done? And who is doing it? No one has suggested this for Dustin and I am wondering if it will help. I know he is older, but can't hurt to try right.
Sue

[ldeverna]

Dr. Kozin is the one who recommended it and administered it to Harper

~Lisa

[Adrienne]

Hi.

My son had botox of his tricep done by Dr. Belzberg out of Johns Hopkins at about 7 mos. old to increase his internal rotation and supination, and it worked pretty well. We were able to avoid primary nerve surgery since he passed the "cookie test".

He was able to get his arm up to about 90 degrees, but because of a shoulder issue which he had surgery on yesterday, was limited in his external rotation, but it really helped his supination.

Hope that helps

Adrienne

[BPI mom]

Adrienne,

How old is your son now? Did he crawl? Do you think that botox interfered with crawling at all? Thanks.