Another New Med -- Baclofen

Yesterday Lyla had a PM&R visit with Dr. Kiesling. Things went well and she was happy to see Lyla being so active, strong, and even extra vocal -- all good things that have come out of getting enough oxygen in the past month.

Now that she's so active, we're seeing a lot more bruising and pinching from her AFOs. Orthotist Megan came to take a look and adjusted the plastic in the ankle area to keep it from rubbing on Lyla's skin. She also added padding to the top of the AFOs so Lyla won't get as much bruising on her calves.

Lyla has some pressure issues on her heels caused in part by her AFOs needing adjustment, but also due to increased tightness in her heel cords. Sarah said Lyla has/is developing something called mid-foot break. Basically, because her heels are tight her foot is compensating and she is walking in a way that puts pressure on a different part of her foot than she should be. Over time, this could cause her feet to become deformed and further impede her walking.

To combat the mid-foot break, Sarah suggested starting Lyla on oral Baclofen -- a muscle relaxing medicine that will help her leg and heel muscles relax so I'm better able to stretch them and Lyla is better able to walk. She said botox can be an option for the muscles causing this new issue, but that she didn't think it was a good idea for Lyla since she had such an averse reaction last time -- and she still asks me about getting poked fairly frequently.

The baclofen will relax all of the muscles in Lyla's body, so she will hopefully see some benefits in her arms and hands too. I'm a little worried how it will affect her diaphragm (also a muscle) since we know one side is already weak, but I trust that Sarah knows what she's doing. And we have a visit with pulmonology next week anyway.

Lyla will wean onto the baclofen and after a couple weeks will take it three times a day. Hopefully we will see only positive results!