botox injections for obpi?

[candjwarner]

My son has an LOPBI and is four months old. He is able when laying down to get his arm onto his chest, although has been unable to get it to him mouth yet. He does not have any outward rotation, he does EVERYTHING turned in. He will be having an NVC and EMG in a few weeks and his neurologist would like to try injecting botox into his strong muscles at the same time (as he will be sedated). The point would be to weaken the strong ones so they don't overpower the weak ones, temporarily. Does anyone know if this is helpful or not? My husband and I aren't sure about it. Thanks, Jamie

[marieke]

Many people have done this, I'll find the threads/posts for you..
It's been very useful for those who have done from what I have read.
Marieke (32, LOBPI)

[marieke]

http://ubpn.org/messageboard/thread ... 449#137449

http://ubpn.org/messageboard/thread ... 379#156379

http://ubpn.org/messageboard/thread ... 472#139472

http://ubpn.org/messageboard/thread ... 993#146993

hope this helps you.
Marieke (32, LOBPI)
I've had 3 rounds of Botox to treat spasticity in my left leg, and it works quite well. It's for a different reason than for OBPI, but still the same outcome.
Good luck.

[hope16_05]

I see botox like any other treatment. If you choose to go through with it, therapy!!!! That will be the most important followup. If you dont do or have time for the therapy, I probably wouldnt suggest doing it. If you are committed to the therapy then you might get great results from it.
Good luck with what ever you decide! I also hope that the tests go well!
Hugs,
Amy 20 years old ROBPI from MN

[katep]

I wish we had done something like this with Joshua. I think it has tremendous potential to help balance the muscles during the reinnervation period.

Kate

[LoriV]

I see you are from Sheboygan - we live just west of Milwaukee. Is Dr. Jacobson at Children's doing it?

We had the same thing done when our son was about the same age. It helped him quite a bit. Feel free to email me if you would like more information.

[cassidysmom]

Hi there,

Cassidy had Botox injections when she was nine months old and I found it to be very beneficial. Cassidy was also casted in a "statue of liberty" position for three weeks. The Botox enabled her to hold her arm in a natural position and also gave her doctor a clear indication of how much function she actually had.
The botox also made range of motion exercises much easier. All in all our experience with the injections was a positive one....hope that helps you out a little.
Dawn, mom to Cassidy 20 months ROBPI

[Mica]

Jamie,

We've had remarkable results with botox injections into our daughter's internal rotators. Aria's is a bilateral injury, and we have had such success botoxing her left (less affected) IRs that we're going to botox her right (more affected) IRs at the end of January.

I want to echo the statement that following this procedure, specific, targeted PT is crucial to success.

Good luck with your decision!

[Vance's Dad]

Jamie,

Our son Vance had two rounds of botox injections within his first year. My wife and I also had a hard time deciding to do this or not. It was wonderful, especially the first round. The first time we saw dramtic improvement within the first month. Vance couldn't bend his arm and after they took the cast off he was bending it that same day. The second time around didn't help as much, but the slightest improvement makes all the difference.
Like us, you'll hear positives and negatives about botox, but for Vance it turned out to be a very good experience.

[candjwarner]

Thank you all for your input! We decided to go ahead and do the botox injections. He will have his first round on Friday (the 18th) at the same time as his EMG and NCV. On a happy note, he got his hand to his mouth for the first time a couple days ago (although he does do it very internally rotated). We were excited.
Jamie