Leah was having some involuntary movement in her legs and arms yesterday. The events became more involved as the day progressed. Late afternoon, I called 911. I was concerned that she might be having a type of seizure, and I knew it wasn’t safe to drive her to the hospital myself. She was alert and responsive the entire time. When we arrived at the hospital, her core temperature was very low, so they warmed her with a special blanket. Her white blood count was also lower than normal. There was no sign of infection, but they gave her antibiotics just to be safe.
She is currently maintaining a normal temperature, and all of her blood work looks good. They started a 24 hour EEG around 3 this afternoon. She’s had a few episodes of the involuntary movement while connected to the EEG. The next step will be determined after reviewing the EEG results.
The lack of sensation in her right leg has increased. Although the motor function is there, it’s been more difficult for her to stand for transfers. In response to the change in her right leg and the involuntary leg and arm movements, we started her on another high dose of steroids. We will continue the steroids through Sunday with the hope that we will see the new symptoms subside. If not, we will discontinue the steroids.
We are also in the process of obtaining a second opinion on the recent changes.
Please pray for our sweet girl.🙏