There’s nothing easy about unravelling illnesses or unknown sources of pain when your child has communication challenges. When a question like “What hurts?” is off the table- you become a master detective on a major mission. Every breath is a sign, every move is a clue. No time is wasted and even the most mundane observation is logged in your subconscious as valuable. “She was sitting like this when she was in the car… and she was grimacing.” “Her leg was straight when she was in my lap… and she was fine.”
You’re on a hunt for info and the treasure is every single answer you find on your way back to base line. Some days the route seems straightforward and obvious. “Arched back equals reflux.” Other days it feels like you’ve been given a map covered in hieroglyphics, the stakes are high, and you don’t know which way is up.
This season has been a bit like the latter.
Since autumn, Abi’s legs have been getting tighter and tighter. This was not a surprise. Her muscles get tighter every winter (common for kids with tone) and we always work very hard to keep her world warm. Typically, with a little massage, a lot of heat, and good physical therapy her muscles stay reasonably loose and comfy. This year, however, the tightness immediately manifested more in her left leg.
Generally, solutions for tight muscle tone can include something as non-invasive as a massage- to something much more intense like botox, surgery, or a baclofen pump. In the past, Abi’s muscles had responded so well to typical PT that we hadn’t explored these options. But as the temperatures kept dropping, her left leg just kept on rising. Eventually the only position that seemed comfortable to her, was when she was bent up in a ball like a roly poly. As her winter break marched on, we began wondering if we would be able to handle all our holiday travels. The night before we headed out on part 1 of a 3 part journey, we said a big prayer and brainstormed some options. We ended up putting her basket of clothes under her feet. This kept her legs from dangling off the car seat and it brought her knees higher than usual. She loved it. Not a single grimace. Success!
As the holiday break progressed we noticed her holding her leg tighter and tighter. Despite having tons of fun with her grandparents, aunts, uncles, and cousins- by the end of the week she was most comfortable laying down playing with her cousins from the bed. And as we began our final car ride home (4 hours) it was clear things had shifted. She was uncomfortable from the start. After relaxing into hour two, hours three and four were a nightmare. Screaming, vomiting, and crocodile tears. While her dislocated hip is always in the forefront of my mind- so far nobody on our team thinks it’s connected.
Long story made a little longer (but shorter than it could be), we all immediately assumed a more invasive approach to tone might be in order. Sean took her to horses (hippotherapy) while I was out of town and Abi had a miserable time. While we were so sad she was in so much pain- it was so good to get multiple therapists looking at her at the same time and trying different positions to brainstorm what could be happening. Her session ran much longer than normal and I’m so grateful for a team that is so hands on and willing to put in the extra time to help our girl. After feeling her muscles, putting her in different positions, and observing her responses, a brand new hypothesis was mentioned: sciatic nerve pain.
The tight leg could have been protecting the back pain. It’s also common with people in wheel chairs who are particularly thin to develop this nerve pain. (Check, check.) She suggested calling the doctor, trying an inflammatory med for a week, and seeing what happened. In the meantime, comfort is key. The more we stretch it, the more swelling we could cause. She suggested allowing her body to be in the position it wants to be in (cannonball) and put pillows under her to allow her to stay in this position more easily. Then slowly remove these supports and let her own body relax into the stretch.
I got a heated mattress pad for the bed and Sean rigged her wheelchair into a modern day lazy boy. (He really knocked it out of the park.) The egg crate adds additional padding for the seat and the noodles keep her legs as high as she wants them. Covered in a pillow case and tucked in nicely to the frame- it almost blends in…
I am so hopeful that this will help and allow us to get back to base line shortly. We are almost one week into this new regimen and I do think I’m seeing progress. Perhaps not as quickly as I would like, but progress none the less. She stretched her leg out on her own for the first time a few days ago and whenever we attempt to see the range of motion, (not a forced stretch) she can let me pull her leg down much farther without grimacing… Particularly when she’s in her warm bed.
While this still may be a tone issue (or a combination of tone and sciatica) I’m hopeful it can be brought back to a place where massage is effective. I know a more intense solution like botox isn’t the end of the world but I sure do hope I can avoid it if possible. Of course comfort is our highest priority though. We will see what this season brings…