botox

[claudia]

Juliana was recommended to try botox on her triceps. She has had the biceps lengthening, and now has no contracture, but she also can't bend. The triceps are now overpowering the biceps. The logic, such that it is, is that by paralyzing the triceps we can give the biceps a chance to really work. Okay in theory...I have a host of problems with the botox concept, but I am really bothered by the lack of progress with the biceps.
I have a 2 part question: first, if you had botox or researched botox, where did you go? I live in NY, so please keep it regional. Second, are you happy with the results?
Juliana is only 3 (okay in 5 weeks) and has recently "discovered" that one arm works better than the other. So, she now talks about what she "can't do" with her left arm. And what is harder to do. I am concerned that if we do botox and it leaves her with a "heavy" arm or one that does nothing-because the biceps are so weak, will she become very frustrated by that?
Okay, so no-one can answer that question, but I think you can see where I am going with this. Any one who has lived thru the 3's (I call them the thrilling threes) knows that it is a wonderful time of learning new things-but a time of frustration as the desire to accomplish a task is more than the ability. When we add obpi to the mix, it makes it more challenging. I guess I am concerned about adding too many challenges. I have now progressed to rambling.
I am going to go now, before I sound ridiculous...
thanks for your help.
claudia

[Beaglemom]

Stephanie just had Botox in Aug. The time leading up to it was a very trying time for us. I was just so uncertain about it. We had it done at Children's Mercy in Kansas City. They are very optomistic about it. One of the nurses told me that they have CP patient that get the injections every 3-4 months, just so the parents can dress the child. I was also told that they usually give it to 2-3 year old BP patient; Stephanie is 8 years old. They told me that it was usually harder on the older ones, because they tend to whine more (my words, not theirs!!). I was told that she would probably have to have a sling, because of the heavy feeling.
Quite honesty, I am not sure that it has really done anything. Stephanie at first stated that it felt like her arm was asleep. But other than that nothing. Stephanie is making progress in PT. I don't know if it is the Botox or just a really good Physical Therapist. Stephanie is using her arm on her own for the first time in her life. It is straighter than it ever has been. It is also stronger than ever before.
I am glad I had her given the shots, (she had a totally of four), but I am not sure that I would do it again, only because of the reaction she had to being put under. Not all patients are put under, she was I believe partly because of her age.
The procedure: Once you are taken back, they put a lotion on to numb the skin, then an IV, then the sleep aid. The doctor uses an ultrasound to locate the muscle, injects it. We arrived at 9 a.m. (or shortly after, we are always late!!) and we were leaving by 10:40. The Actual procedure took only long enough to go to the gift shop and buy a coke (20 minutes, approximately).
I hope this helps and doesn't confuse you more. Beaglemom

[admin]

I asked my therapist who is working with botox and a couple of bpi kids now. SHe has had good succes with it. It allows will allow the bicep time to strengthen. She has never had a problem with it causing permanant issues with the muscle they paralize. this was my uneducated concern. But it is mostly used to the opisite here. As an alternative to sereal casting to lengthen the bicep. They try it first before putting the child through the whole casting ritual(which we have been through alot) I wish they had it when we were going through it wiht Michael.