Botox

Botox is a DEFINITION HERE. It has been used clinically for the treatment of spastic cerebral palsy for X years, although it has never been FDA approved for this purpose. There are dangers (see attached note from doctor). At the time of Elena’s first injections, I knew passively about the dangers related to Botox injections but I did not seriously consider them as a threat. She was given her first shots in the calf and soleus of each leg at X years of age. I have heard from older patients that the shot is very painful—the needle gauge is large, and the actual Botox preparation stings, in addition to the liquid displacement within the muscle (the pain we all feel with shots). Overall the process is quick, and she was not sedated. After her nap on the same day, for the first time in her life, her naked feet were flat on the ground. It was like a miracle! I knew it wouldn’t last, but having Botox treatment I believe greatly facilitates the use of AFOs, and allows the tendons and ligaments to grow more properly to avoid (or postpone) orthopaedic intervention. I would highly recommend it. The shots ARE EXPENSIVE. In general, at the time of this posting, it costs about $1000.00 per vial (her first injection was one vial, split between four muscles). Medicaid covered what my insurance did not.
She got her second round of injections 6 months after. Normal duration of Botox spastic muscle relief is around 3-6 months. elena was injected in the same muscles as before. Again, it lasted around 6 months, but her needs had changed—with increased weight-bearing, her right knee constantly “caved in” (due to the pulling action of her right adductor muscles) and she had a very hard time standing up straight (over-strong hamstrings). Her third round of injections was the first time they targeted multiple muscle groups—the adductors (inner thighs), hamstrings (back of the upper legs), calf, and soleus. She was sedated for these shots, as she had become bigger, stronger, and more vocal by this time. The Botox effect wasn’t as extreme this time around, as we still have to wrestle with flexing her right foot—don’t get me wrong, it is MUCH easier than before her injections. I can tell, though, that Botox treatment won’t be a viable option for us much longer. I imagine that within a 2-year period, there won’t be much benefit with further shots.
One observation that is worth noting: just b/c Elena had an easier time moving did not mean her balance improved. I guess being less “tight” gives her the opportunity to find a different way to balance her body, but any progress in the balance department is extremely slow. Botox has definitely given her the flexibility to work on protective responses, such as hands-in-front to catch herself when she falls, or bending her legs when she falls.