Tonic Seizures

Lily went about 75 days seizure-free, and then a new type of seizure reared its ugly head. Lily's new seizures are tonic seizures that last about 10 seconds and occur about 4 - 10 times a day. In light of these new seizures, we decided to change neurologists. Our local neurologist was simply letting his ego get in the way of medicine and took great offense to us wanting to seek a tuberous sclerosis specialist when we hit dead ends. We are very pleased to see the epileptologist at Cook Hospital again; he knew the steps that helped Lily find freedom from seizures for a time, so we feel like if there is a way, he will do everything he can to find it. He has started Lily on a new medication called Zonegran; however, he doubted that it would work due to Lily's situation. He said that she may be a candidate for brain surgery and that this is the next step in treatment; however, he wanted to try a seizure medication before we start the pre-surgery workups (which are scheduled for the end of May). However, since she has started the medication, her seizures (at the lowest dose) have reduced to no more than 3 a day! I would love to see the medication help her to be seizure-free again, but I also know that the freedom can be temporary and brain surgery may be imminent. As long as there are drugs to try and surgeries to attempt, we will never, never, never give up. We are exhausted with worry and yet somehow filled with hope. I guess that's the thing with our Lily...we feel so challenged to take care of her, but her existence makes my cup runneth over.

Easter Bunny Day!