I had two reactions to the news about the little girl with cerebral palsy who allegedly died as a result of getting Botox in her legs to prevent her muscles from having spasms:
• Uh-oh, it's been awhile since Max (my little boy) got a Botox injection, gotta get on the phone.
• Uh-oh, maybe I better not get him that Botox injection.
I'd venture that this is a typical mixed reaction you might get from a parent of a kid with special needs. It's hard not to be tempted by alternate treatments when mainstream medicine offers so few options. It's hard not to do whatever you possibly could to help your child and improve his or her quality or life.
Max also has cerebral palsy. He had a stroke at birth that caused brain damage. Max is seven, the same age as poor Dee Spears of Potter County in Texas. Her mother is suing Botox manufacturer Allergan and claiming an overdose caused her daughter's death in 2007; the company is pointing to a bacterial infection unrelated to Botox. Like Dee, Max has gotten Botox injections to help with muscle issues--in his case, tightness in his hands that made it hard for him to open them. It's an "off-label" usage of the drug--the company never licensed the drug to help muscle tightness in kids with cerebral palsy, though it's become common practice. Insurance paid for our treatments.
Over the years, my husband and I have always had the motto that if it couldn't hurt Max but it might help, we'd be willing to give it a go. It's why we've tried experimental treatments such as hyperbaric oxygen therapy in which you and your child (or your child alone) hang out in a tent or long glass infused with pure oxygen, which may help "awaken" dormant areas of the brain. My husband used to lie down in the tube with baby Max, and we'd joke that he was going to be the smartest dad in the whole wide world.
This past summer, we got Max stem cell therapy at Duke University, using his cord blood that we'd banked at birth. The doctor doing the transplant, Dr Joanne Kurtzberg, explained how stem cells work this way: "We believe that stem cells can travel to the brain and then help repair damage caused by stroke, low oxygen or other vascular problems. The cells may work in two ways, first by releasing hormones that calm down inflammation and also attract cells from the brain to heal damaged areas, and second, by providing stem cells to contribute to the repair."
When you have a kid with special needs, as a parent you are so eager to do whatever you can to help your child. With cerebral palsy in particular, there aren't a whole lot of options for resolving muscle tightness. Physical therapy, massage, special splints and exercise can help, but for us (and other kids I know with cp), Botox has always been the thing that's provided the fastest and most apparent benefit. Botox has left Max's hands looser, and after getting the injections he's been better able to grasp objects and generally use his hands. Both his therapists and doctors have recommended the Botox injections; the physiatrist who did this procedure at the hospital (you go there and stay for several hours) does dozens of injections a month. I used to joke with friends about opening a mommy-child Botox clinic: Moms get a little Botox around the eyes to get rid of wrinkles, kids get Botox to relieve the stiffness.
Obviously, the Botox injections have taken a serious turn with the allegations that Botox lead to this child's death. After getting injected, Dee Spears had trouble with breathing and swallowing; it remains to be seen whether or not Botox played a role. As one doctor explained it, "All drugs have potential side effects and one side effect of Botox is that it can, on occasion, migrate from the injection site, to other muscle groups. When this hits the respiratory muscles, it can make breathing difficult."
I'm keeping an eye on this case. And before I schedule the next Botox appointment, I'm having a long conversation the doctor. But will it stop me from getting my son Botox injections? I don't think so. This may no longer 100 percent fit the bill of "can't hurt" but at the same time, I can't just slam the door shut on something that has made it possible for Max to be able to better function and live his life.
It's a tough line you walk as the parent of a kid with special needs, making these major decisions for a child you so desperately want to help. This is yet another thing to add to my list of concerns. And, yeah, I may just need some Botox for those worry lines...but I won't be rushing to get it.