United Brachial Plexus Network

Okay, I said I would post when I had some information about botox. We have decided that we will proceed with botox injections for Juliana. She had a biceps contracture which we dealt with using the biceps tendon lengthening surgery at TCH. The result, though cosmetically attractive, was that her weak biceps were being overpowered by her stronger triceps. Not that there is so much power in either muscle, just that in comparison, the tris had more than the bis.
Our ped. neuro believes that botox should be used by bpi kids. She thinks it is an excellent tool in the treatment of muscle imbalances.
Dr. Nath told us in August that he thought it would be a good thing to try. His argument for it was twofold:
1. it would give us a chance to work the biceps only and improve function-using therapy and estim
2. that it could help her form some new pathways to the muscle.

So, here we are, months later. I have seen a botox doc who is local (long island) and does a lot of botox on cp kids (and a few bpi, too).

Here we go:
-the shots do not require anesthetic
-they use a very fine gauge needle
-the amount is based on the child's weight
-the effects are transient, and last an average of 3 months.
-it takes a week to 10 days for the botox to get up to full strength
-what you see after the 10 days is what you get for the next 3 months.
-the toxin stays in the muscle and does not travel thru the blood stream.
-there aren't allergic reactions because it is a toxin.

This doctor has done most of her bpi injections in the biceps, not the triceps. So, if you are having a problem with a biceps contracture, you should look into this. She has treated them with a combination of botox to the biceps, estim on the triceps, and splinting. She has a patient who was recommended for biceps surgery who does not need it now!

We will not be able to do the actual injection until the second week of November (scheduling conflicts) but I will report as to the pain level.
She did offer a script for emla cream, which I declined. The emla doesn't stop the pain of the liquid being injected, just the needle going in--such a fine gauge needle is not the problem.

So, that is what I have to report. If you have any questions, just ask. I can only tell you what she told me. Remember, this is my experience, it is not the word of a doctor.

hope it helps,
claudia

Thanks for all the great info Claudia!!! I am for sure gonna to ask about this for Ian!
Blessings,
Kristie

My daughter had botox injections when she was four and it was very hard on her. She was in a lot of pain from the injection.

I just wanted to let you know. Of course, it did not help her but that is different with each child. But she did have lots of pain.

thanks so much for the info. I to am faced with this Thomas is 17m and we have been doing serial casting.x2 weeks -15 and it comes back so fast out of the cast in a day. So they want to try the botox and splinting to see what happens. And maybe tess to..
I just hope it works I don't want him to be cut on again but he has gotten so much more shoulder movement with his arm out. I really see what he had but could not us for the contractor. Thanks again I will keep eveyone updated as well.....
Carron and Thomas

Stephanie had Botox in August. She was put to sleep before her injections. The only thing that she stated about her arm was that it felt asleep after the injections. I personally could see no change in her or her arm.

Thanks for the additional input.
We will still be doing the botox in about 10 days or so. I have promised Francine to "journalize" the experience (is that a real word??). I will keep you all up to date as things go.
As for pain with the injections, I have been assured that it really is not painful, but I guess we will see about that! And, our doctor does not knock out the kids to do it. I specifically asked this, as I was not looking for any more anesthesia.
Also, I was wondering about sensory issues. I am told that the sensory nerves are not involved, but I would like to hear from parents whether or not this was their experience.
So, that is the update from botox-land!
claudia

Stephanie did not experience any pain whatso ever with the injections. None of her sensor nerves seem to be affected. The only bad reaction Steph had was coming out from being put to sleep. She just couldn't quit crying.

After attending a BPI clinic in Seattle, my 9 month old daughter Tara, shows she needs the muscle transfer surgery. Her internal rotation is such that they think she is heading for dislocation.
I inquired as to the use of Botox on the one muscle that is working...etc. 'It is not the policy of their office to use Botox, but they would not disgree if I choose this for Tara'. Since they were little help, can you answer these few questions that her PT's and I came up with?

1. Is there an age requirement?

2. Do the effects of the Botox wear off completely at the 'end' of the period or is there a chance that the good muscle would become weaker than it was prior to the injection? Are there really 'no' side effects?

3. How does the dr performing the injection know for sure he is hitting the correct muscle?

4. I have been on the phone for a week now, how do I find a qualified botox dr to do this and/or one willing to talk to me? (you can rule out her pediatrian and pt's)

PS, her surgery is scheduled for 3 months from now, so any head start I can get would be great. Thank you so much in advance!
Brenda