Botox: There’s power in the poison

Sept. 27, 2009

Note: Just a reminder, I’m not a medical professional. My interpretation of some aspects of modern medicine can be very crude and sometimes completely incorrect. This is one parent’s expression of what I understand, our experience and the result.

I’ve grown up under the notion that almost all home repairs can be fixed with duct tape and cable ties, and a project without one or the other, just isn’t done right*. Lately, I’ve almost gotten the same impression of doctors and botox. It seems to be popping up in new treatment after new treatment, and it was joked by the senior surgeon of The Doctors that he carries some in his car’s first-aid kit…just in case.

About nine-months ago botox was introduced as a possible treatment for my son. The strategy was to counteract the high tone (intense stiffness) in his lower extremities. Botox would lessen the tone to help increase his range-of-motion and force him find another way to help build leg strength. Of course botox, being a poison, will basically temporarily paralyze the muscle (gosh, that would lower the tone) and thus initially lower the strength in that area, with the hope of building it back up properly. For Nathan, the suggestion was to inject it into the hamstrings right above the back of the knee. They also chose to use one injection point in each leg, but twisting the needle inside to apply it to both muscles per leg.

Along with the suggestion comes the disclaimer that this use of botox (along with most other uses) is not officially FDA approved, and there’s no certainty that insurance will support it. Needless to say, I was skeptical at best of whether or not this was a good idea. He was just starting to weight-bear on his own (with very tight, straight legs) but any steps he tried to take were up on his toes (his high tone goes all the way through his legs/feet almost to the toes.) Our biggest concern was would this completely wipe out the little bit of progress that we had made?

My wife ran all of the pre-approval/medical-necessity paperwork through her insurance, and they did agree to it, so we decided to give it a chance. Our doctor and PT both told us that the effects last for 3-4 months and nothing was completely permanent so that comforted us some as well. The injection was quick (one of the quickest appointments we’ve had, less than 10 minutes in-and-out) and for getting shots in both legs, the little guy took it pretty well. We then learned it would take around two weeks to take full effect.

We did quickly see improvement in the range of motion and the standing did take a little bit of a hit at first. Not being able to lock his knees and stiffen up everything was a little shocking for him as well. Gradually, we did start seeing improvements in his strength and from the videos, you can tell that the leg strength did come back. Initially, our plan was to try to stretch it out as long as possible without reinjecting him, but when faced with summer (at the time) coming up, when he would work harder to get outside and walk to doors and such we didn’t want to lose that momentum. We’ve had three rounds of botox at the time of this posting and we are on the schedule for another in a month or two.

For anyone else considering botox for a remedy remember that each case is different and both financially and medically it may not be the best solution. Like a duct tape & cable tie project at home, it’s not permanent, and may not be ideal solution, but unlike the two, it can really lead to a better outcome in the end. In any rate my son now has the smoothest, most wrinkle-free thighs of any toddler we know.

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