Lauren continued to get worse this past week and started having drops and grandmal seizures during the day. It had been over 5 months of no seizures while she was awake. We had to use diastat(her emergency med) last week. After she was great for a couple of days then as soon as it wore off she went right back into her bad state. It has been so hard to see her in this state after a pretty stable 5 months.
Two days ago she started to stabilize a little and the drops and daytime seizures have appeared to stop. She is up and about doing stuff but not talking much and very out of it. I am just happy that we have not ended up at Primary Children's yet. Last week we also started her on Topamax again. It will take awhile to get her blood levels in a therapeutic range so we will have to give it a couple of months to see if it will work. I really hate this drug, she is so out of it. I know the point of the medicine is to slow down her brain but with the topamax it just seems worse then the other meds. If it works I will take the side-effects, but if it doesn't I really want her off it. I don't know why I am even holding out hope that something is going to work? It has been 2 1/2 years of this and so many drugs I can't keep track, why do I think something will work now?! I guess it is just a my hope and prayer that someday we will find the right combination to help Lauren and give her brain a chance to develop.