Maria got home from the PEMU last night. She’s been energetic and happy today, clearly glad to be home.
She never did have a seizure during her stay. She had a number of behaviors as they cut off her medication, including the open mouthed thing we’ve always assumed was a seizure, but the neurologist said there were definitely no seizures on her EEG. There was one sort of “near seizure” but when he reviewed the video there were no behaviors he could point to. She can still get overwhelmed by things, and that leads to unusual behaviors like the open mouth, but these are either deliberate or muscle-based, not brain-based.
However the EEG clearly showed she is a seizure patient so he restarted her meds. He replaced the Trileptal with Keppra, a drug he said is more effective on her type of seizures. Unfortunately there is an insurance glitch so the pharmacy gave Cathy a small, short-term prescription until that can get worked out. They can’t give small amounts of liquid – it’s either the whole bottle or nothing – so they had to give us pills. Of course Maria can’t swallow pills, plus the pills are 500 mg and she should be taking 200 mg, so we’ve been messing around with grinding them up and figuring out how to give the drug to her.
Right now the biggest problem is how to get the glue out of her hair. The EEG glue is pretty nasty and she has big clumps of it. They recommended olive oil, mayonnaise or peanut butter. I tried the olive oil and it helped some but I had to grease up her whole head to do it. She still has some large patches even after all that. I think it’s going to just be a matter of waiting for it to flake out on its own.
Now we have to wait to see how the new medicine works out, which of course delays yet again those new medicines prescribed many months ago.