It has been a little while since I updated and things have improved a teeny bit here. The Keppra that we started on at the beach has reduced the length and intensity of the clusters of spasms. Unfortunately, she still has the clusters 6-8 times a day and the Keppra does not seem to help the single spasms that throw her to the floor at all. At this point, in order to say a medicine is truly working for her, we have to stop the seizures altogether. So we are moving onto our plan B from the last Neurologist visit. The dreaded ACTH.
It arrived yesterday on ice. So now we have close to $100k in the fridge. I liked the invoice which said “patient responsibility $9.00, insurance pays $97,722.30” Holy cow, that is outrageous. At that price (and given that I have to stick a huge needle into her thigh muscle twice a day) it better work!
She just had her first injection here at her oncology clinic in Charlotte, so tonight will be my first time giving it. Like the steroids she has been on before, this should increase her appetite and make her very irritable. It will also likely make it difficult for her to sleep. It also suppresses her immune system so we will be basically housebound like when she was on heavy chemo. Last time she was on steroids for a long time, she ended up in the PICU with septic shock, so we will be incredibly vigilant this time.
Please pray for this to work for her. She has now been having seizure activity for 6 months and we desperately need to put a stop to it so she can begin developing again instead of regressing.
I added a few new pictures from a few days ago too. Click on the Photos tab at the top.
Love to everyone,
Liz, Brandon, and Maddie