Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary toddler with cerebral palsy.
A couple of weeks ago, Syona got a total of 14 needles in three sets of muscles in her legs. The needles were filled with Botox.
No, this wasn’t a scene from Toddlers & Tiaras — Botox is a relatively common treatment for kids with spastic cerebral palsy. It basically works by temporarily reducing the spasticity in the muscles. This reduction allows us to stretch out Syona’s far-too-tight muscles, while we work on strengthening the muscles that are often “covered” by the spasticity. In building up the surrounding muscles we hope it can help her counter the spasticity when it returns. (I’m not a clinician, and this is my extremely over-simplified explanation).
Most kids first receive Botox around two or two-and-a-half. Syona is three and we waited more than six months for the procedure because we wanted it done under very specific conditions. I’m usually pretty patient, but the waiting period had me at my wit’s end. Syona’s legs just seemed to get tighter and tighter with every growth spurt. We did what we could with constant stretching and therapy, but she was losing ground. She stopped taking steps in her walker, complained about pain and lost some functionality. You often hear people talk about the challenges of waiting and the impact it makes. What I didn’t expect was the amount of stress I would feel during this period.
Thankfully, it’s over. Syona handled it like a champ and we’re now into a period of intensive therapy — lots of physical therapy, non-stop stretching and strengthening.
It took about a week for the Botox treatment to fully kick in, but it’s made a huge difference. Her legs are so much looser, she doesn’t complain of pain, she moves around more, has a lot more stamina, and wants to wear her AFOs (special braces for her feet that help to give her the extra support she needs). Syona would also do what physiotherapists call “scissoring” with her legs, meaning that the tight muscles essentially make the legs cross over one another instead of remaining straight. With the Botox, she still scissors, but much less so.
The other big thing is that Syona is really excited to use her walker again and she’s able to move around in it. She’s not quite using it functionally, but we are practicing going up and down the hallway for as long as she lets us. She’s so excited to move on her own, and doesn’t drag her feet or complain of pain.
Botox wears off between three to six months (if we’re lucky) and I know it will be hard to feel the tightness creep back into Syona’s muscles. Physically, she will likely face many of the same challenges she did pre-Botox (not being able to walk in her walker comfortably, pain, etc.). I don’t know what kind of emotional impact it will have on her down the road. I would imagine that being able to successfully take steps only to have that ability slowly fade away again would be discouraging. I know that, emotionally, it will be hard on me to feel her legs tighten up again. But, as we always do, we’ll just have to take it one step at a time — literally.
Have you ever witnessed your child’s abilities going up and down? How did it feel? How did it impact them?