Special needs

Why I want my daughter's Botox to last forever

More parents are discovering that Botox treatment can help relieve the symptoms of cerebral palsy in their child.

Syona-cerebral-palsy

Syona moves around more freely after her Botox treatment. Photo: Anchel Krishna

Before I get started, I should explain up front that this post is about the medical use of Botox to relax my daughter Syona’s spastic muscles, which is a symptom of her cerebral palsy.

The first time Syona got Botox, the results were great. It sparked her interest in moving around and she was much more comfortable. We worked with a great team who was dedicated to strengthening her muscles so that she would retain some of the new functionality she learned, even when her muscles started tightening up again (Botox is temporary).

Read more: Why I let my kid get Botox>

When the Botox wore off after a few months, Syona tightened back up and would tell us when she felt like her legs weren’t working. Fortunately, some of the discomfort she’d previously experienced seemed to disappear. It still flared up occasionally, but much less frequently.

A few weeks ago, we headed to SickKids in Toronto so Syona could get her next treatment. The staff were amazing, as usual. I marvelled at how much of a difference a few months can make. I warned the nurses that Syona is usually a bit of bear coming out of the anaesthetic. But this time, she was actually pretty good. She fussed a bit, but was back to her usual by the time we strapped her into the car seat to head home.

The effects of the Botox were also much quicker this time around. We could feel her legs loosen within a day of the procedure. Since that time, we’ve seen some major changes. Syona used her walker, functionally, to move around in public a few days later. This was a first for her, and probably worthy of it’s very own blog post.

She’s much more comfortable, can stretch easier and is really motivated to move around on her own. Getting her dressed is easier. She’s just more comfortable and that makes everything better.

But I know it’s temporary. And that’s the hard part. At some point, those legs are going to tighten right back up again. I find myself wishing that Botox were more permanent. I try not to think about the future too much because I don’t want to miss all the awesome things that are happening right now, but every time I wrap her loose legs around my body to carry her around, I come back to that same question: “Why can’t we make these muscles loose forever?”

It’s a simple question that has no answer. Sometimes the question breaks my heart just a teeny, tiny bit. I know these are the natural emotional ups and downs that come from temporary medical procedures. I keep hoping that dealing with them will only get easier each time. When it gets too difficult, I just take a deep breath, look at all the fun Syona is having right now and revisit my happy list, if needed.

What are the ups and downs you face with your children? How do you deal with them?

Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary toddler with cerebral palsy. Read all of Anchel’s Special-needs parenting posts and follow her on Twitter @AnchelK.