This past month has been very up and down with Lauren. About 2 weeks ago she became "toxic" on the new medicine that we started while at the Cleveland Clinic. She was not eating for days and sleeping all the time and her seizures got a lot worse. We then found out that her blood levels for the drug were really high and we had to stop giving it for a couple of days, then reduce the amount down to try to get her blood levels down. She was not on an abnormally high dose of the drug, her body is just so sensitive to medication sometimes. Being on the Keto diet also tends to make you more sensitive. So we got her stabilized again with lots of Valium and diamox.

Last week we added another drug, Depakote. This was one of the first drugs she was on when her seizures started, it didn't seem to do much back when this all started. Dr. Tuxhorn really wanted to try it again because it is one of the best drugs for Doose syndrome. Also, sometimes trying the same drug at different stages can have different effect. Since starting this drug this past week Lauren has been doing very well. She still has 2-3 small grandmal seizures a night in her sleep, but her days are great. She is more interactive, talking more, playing etc. It has been awhile since she has been this engaged. We are doing another increase tonight of Depakote so hopefully things can improve more? The real test is to see if it can last longer then 3-4 weeks. We have gone through this "honeymoon stage" so many times, so we remain cautiously hopeful.

Right now she is on the Keto diet and 4 drugs -Depakote, Zarontin, Clobazam, and Banzel (we are in a very slow process of weaning this drug).