United Brachial Plexus Network, Inc.

We are looking at getting botox treatments for Zadyn, our 18 month old LOBPI daughter. We are hoping that this will help her muscle function and increase the ability to use her bisep. Has anyone had botox done for their child? Zadyn has not had surgery (since the primary done a year ago) and we don't have plans for any secondary surgeries any time soon. I was hoping someone else has had this same situation so we would know what to expect.
Thanks--
Zadyn's mom

My son Eric ROBPI will be 2 on the 25th and is going to have an injection into his bicep on Wednesday, however we are doing it to temporarily weaken his bicep in order to get some tricep. My son has not had surgery. Where is your daughter getting her bicep injected at?

Hi, This is Lucy's mom. She is 20 months old and LOBPI. She had her first Botox injection on 3/1/07. She had primary surgery at 3 months of age and has been making a steady but very slow recovery. Her doctor recommended Botox because her tricep and bicep were co-contracting when she was trying to bend her elbow and the tricep was over-powering the bicep.

It takes a few days for the Botox to start working and the doctor that administered the injection said that we would see a peak in the results at 2 weeks post injection, with the overall effects lasting anywhere from 3 to 9 months. We are definitely seeing a difference in the way she lifts her arm but still no real active bending of her elbow. We just keep doing her stretches and the activities her OT & PT recommended to us.

The actual procedure only took 5 minutes and the worst part of it was that we had to practically sit on her to keep her still enough for the doctor to inject the Botox where he needed to. I have read on some other posts that some other doctors use EMG to locate the exact muscle they want to inject and that the child may even be under anesthesia for the procedure.

I hope this helps. I'll try to keep you posted on what else we see in the way of results. Carol

Lucys Mom

Well we should see..botox injection is tommorow. We have the opposite. Eric'c bicep is overpowering his tricep. Eric bends his elbow very well and has excellent hand to mouth function. He cannot actively extend his elbow though, so he is quite contracted. How was the injection, was it painful for her afterwards. Thanks for the reply.

I don't think that it was painful for her. She fussed while we were holding her for the injection and then she stopped as soon as the doctor was finished and we let her get off of the table. She didn't seem to be uncomfortable because of it by any means after the fact.

I will tell you that I was so anxious and nervous about the whole thing. My greatest hope was that she was immediately going to be able bend her elbow after the injection. But as always it is a waiting game and even 2 weeks post-injection the effect is still very subtle. It may be because she just needs to build the strength up and that her tricep wasn't really that much more powerful than her bicep.

You all have probably been to your appt by now. How did it go? How did Eric do?

Carol

Eric did extremely well and did not even cry. The needle was so small. Well we will see. I believe the dr. said that he injected 30cc. He said that should be enough to get the job done. He also recommended probably three rounds of injections at three months apart. I wish it took effect immediately, and I hope we see results, however it was not invasive at all so that was the upside. I will keep you posted. Do you know how much botox was injected into your daughter?

I don't know what amount the doctor used. I know that the needle was small like an insulin needle and he injected in 3 different places.

It has been one week post botox injection and Eric is extremely clumsy. He fell on his face today and got bruised up. His balance has really suffered. Did you notice this with your daughter, and do you or anyone have any suggestions. I was hoping that maybe Theratogs would help??

Holly

Hi Holly,

Lucy has not had any balance issues that I have noticed since her botox. Lucy had been really clumsy and fell a lot for several months after she started walking but for the most part doesn't fall as much. I have noticed that she is not climbing stairs as confidently as she was before the botox and she almost bit through her lip the other day while trying to step up. Eek!

I think Theratogs are definitely worth looking into. I've been thinking about having Lucy togged but I need to ask her PT and OT about it to see if either of them are certified to tog.

Has Eric still been able to get his hand up to his mouth or is his bicep totally relaxed now? Is he frustrated?

Carol

Carol,

Eric can still get his hand to mouth, although he does not do it as much as he was before the botox. Also, the stairs are another issue, and Eric is all of a sudden coming down on his stomach. He does seem more frustrated with his daily routine, and I am hoping to get him fitted for theratogs soon. Thanks for responding.

Holly