United Brachial Plexus Network, Inc.

I have a few questions..

1. If you could see any BPI Specialist anywhere in the US for your child, who would it be and why?

2. I would like to know your experiences with Botox. Those of you who have had it for your young ones, knowing what you know now, would you do it again?

In answer to your first question:
I would see multiple doctors, not just one. And we do see multiple doctors. Since bpi treatment ultimately involves the child, I go for docs who treat the child well, as well as being excellent doctors. We see Scott Kozin at Shriner's Philly, Peter Waters at Children's Hospital Boston, Andrew Price in New York and have flown to LA to see Michael Pearl. We used to use the orginal group from Texas Children's, and Shenaq followed Juliana's progress closely until his untimely death. Among other things about these doctors that I like, is their ability to be contacted via email. All of them will answer questions via email, and mostly very quickly.

Question 2, Botox:
We used botox on Juliana for a co-contracture problem when she around 3 1/2 years old. We did two rounds, and had very good results. She seems to be co-contracting again and botox has been recommended to help her. We probably will do it, we just have to carve out the time. So, I guess that answers the second part of your question, we would do it again. In ANY treatment there can be reactions, loss of function, negative results. This is part of treating the injury. I always try to balance what she can possibly gain vs what she will possibly lose. I find that with Botox (and I know others will disagree), there isn't much of a downside.

Good luck with your decisions,
claudia

I agree with Claudia, you have to see multiple doctors. I live in the NW so I see different doctors than the ones often mentioned here. They all have different ways of doing things but all have the same opinion as doctors in regards to what type of treatment my daughter will need. The only difference is timing.

Re: Botox, we tried it in July for the first time and I was worried because I read the downside of it (what could go wrong), but everything went just fine and very quickly. Her results are good and would do it again after it wears off if needed. Every child is different.

Lupe (Yaritsi's Mom 2yr old ROBPI)

Well, I'm not sure about the first one. We're pretty happy with Kozin as our "primary" bpi specialist, but have thankfully gotten several opinions. I highly recommend multiple opinions!
As for the second: we had a wonderful experience with botox. Our first round didn't help gain much movement LONG TERM (everything he gained actively he lost again) but it made a world of difference for keeping him stretched out. We were able to get and keep him fully stretched out. He was five months old for his first injections (to his internal rotators). Six months later, we had our second round. I was a little skeptical this time around but am now thankful we did it. Titus has made so many gains actively that I am still in a bit of shock! We still have our setbacks, but we have external rotation! I realize that not everybody has a good experience with botox. Every child is different and every injury is different (it seems like that's our mantra doesn't it?). For us, though, it worked.