Yesterday Parker had a round of Botox injections in his legs to help with his spasticity. We've done this procedure before and we've seen a noticeable improvement in Parker's range of motion in his legs. As I recently learned from talking with other KIF1A families, Botox does not always help. Sometimes it can loosen the muscles too much, causing worsening issues with balance and gait. Unfortunately KAND (KIF1A Associated Neurological Disorder) does not come with a user manual of strategies that work for every kid, let alone targeted treatment options that address KAND specifically. So we have to do our best to work with our medical team, sometimes even educating doctors, therapists, etc. on KAND based on what we, as parents, know from other families and research.
Parker did very well before and during the procedure. Afterward, not so much. He experienced 30 minutes of raging "delirium" after waking up from the anesthesia. This reaction is quite common, although we've not seen him react this way in the handful of other times he's had anesthesia. I won't describe it in detail, but it was rough. I cried. Usually I can pull together some kind of mom superpower to hold myself together when Parker goes through something like this. I've even had to hold him down in the ER once as two nurses put stitches in his lower lip after he had a fall (thanks KAND for wrecking Parker's balance).
What made it so hard was knowing that we chose to have this procedure done. I didn't choose for Parker to bust his lip, landing him in the ER with five stitches. But, we did decide for Parker to get Botox, and while it absolutely helps him and we will have it done again, there is a lot of guilt that weighs me down from having him experience anything less than rainbows and sunshine.
The good news is that Parker won't remember his delirium episode. Once he broke out of it, he was more or less my normal Parker--just a little bit grumpy. Once we got home he was completely fine. And then he was treated to Orange Leaf and a trip to the Nature Center.
I'm not sharing this because I want pity or to make anyone sad. This is just part of our story. And this is reason #29492384 that KIF1A sucks.