Botox
One Spasticity Management Tool
Botox or Botulism toxin is one method used in stasticity management. It is injected into spastic muscles to paralyze the nerve endings. While the spastic muscles are inactive you increase physical or occupational therapy to work on making the atrophied muscles stronger. This helps the atrophied muscles counteract the spastic ones when the botox wears off. Botox is a temporary procedure. It lasts anywhere from 3 to 12 months. One problem with Botox is that children can build up an immunity to it. It may work well the first time but subsequent treatments will usually last a shorter amount of time until it gets to a point where it does not work at all. Botox A is what is used at this time. They are working on a Botox B, which could help with the immunity problems. When Botox is administered, the child is usually given conscious sedation (Versed). You can also use emla cream to numb the area where the injections will be given. Emla cream needs to be put on at least an hour before the injections are given. Below you will find one child’s story with the use of Botox.
My daughter Madeline has had great success with Botox. Your child could experience temporary setbacks and these are actually signs that the Botox has worked - for example, Maddy had Botox on her hamstrings and adductors a few months ago. Right after the Botox (about 6 days after - when it really takes effect), she was definitely weaker and couldn't walk as far. But keep this in mind: the reason is that the Botox temporarily paralyzes the spastic muscles, therefore she couldn't rely on her tone to help her walk. She had to develop the muscles that she's supposed to use instead - so the setback is actually good because it allows a time to focus on getting the opposing muscles stronger. That way, when the Botox starts to wear off again, the opposing muscles are in better shape to help her walk more normally - hopefully for good! I would definitely make sure that she has good PT for the post-Botox months.
Maddy was on her toes all the time before her first Botox in March 1999 (20months old), and she has had NO Botox on her heel cords since, and she's never on her toes!
Also, ask your neuro about serial casting for a few weeks after the Botox, or wearing AFOs and/or knee immobilizers and/or wedge during sleep (depending on where you do the Botox). These things sound terrible, but they have helped Madeline SO much, and she tolerated everything well except a wedge after Botox on adductors. It's an individual thing.
Here are some pieces of information that I wish I had known the first time Madeline had Botox: * you might not see any difference for about 5-7 days * after that, you'll likely see a difference, then more of a difference, until you see some backsliding of previous ability - but don't let this get you down! It means it has worked really well and now's the chance to work and get strong for some hopefully sustainable improvements, even after the Botox wears off (most often about 4-6 months) We also started functional electrical stimulation (while awake and during exercises, for short durations of time per day) after her first Botox injections and they made her much stronger, much faster during that critical time when Botox zaps the high tone and lets you really get to work on using the correct muscles. For Maddy, we have used it on her quadriceps (to strengthen her thighs when she had Botox on her hamstrings) and later, when she was walking, for her anterior tibs (outsides of the shins, to help her heel strike when she takes a step). We did it for about a year and a half, every day (with a few days cheating) but now that she's walking around so much we haven't done it so much - she seems to be getting stronger all the time just from every day life. Also, we did do serial casting the first time she had Botox - I think it was for 2 weeks, one set of casts per week. It gave her maximum stretch when the Botox kicked in. For the next 2 rounds of Botox, we didn't do casting because the second time we didn't even have to inject her in her heel cords again - she just never went up on her toes again after Botox #1. The third time, they didn't cast because it was more important for her to be mobile during the maximum stretch time.
I wish you a very positive experience with the Botox!
Heather
h-joneil@mediaone.net