Lauren has had a very bad week. She has not fully recovered since she had the 6 t/c's in her sleep last week. We used her rescue meds again last Sunday and they didn't do anything to help, just added more drunk like behavior but still having hundreds of seizures. Monday I took her to Primary Children's Er . They were a little nervous when they asked how long she had been like this and I told then since Saturday morning. They pulled out the oxygen and gave her the fastest IV I have ever seen and gave her Ativan (more valium). Then they wanted her admitted to the hospital. I was not planning on staying, I was hoping they would give her some rescue meds then I could wait till I heard from her docs on Tuesday morning.

It was a very frustrating day in the hospital (having medical students ask me if she was full term, any problems with her delivery, etc....! Questions I have answered about a hundred times!) If I did not have a brother in medical school I think I would have hit one of them! It is so hard to explain the diet and a severe seizure disorder to them when I really don't get it. Anyway by that night I was asking to go home (thinking the 3 days of continues Ativan valium her doctors at Johns Hopkins had ordered) would work and she would be fine. They said I could go if I felt okay taking her in that state. Looking back now I should of stayed because she didn't improve. This past week she has hardly walked or talked. Most of the time she is being held with her head hanging sideways, drooling, eyes rolled up, jerking, and twitching. There has been some moments where we have seen "her" come through but not to many. We have been in constant contact with her doctors at JH. They increased her calories by 200 hoping to increase her ketone levels. I feel like we are going in circles, up and down with the calories. They have done hundreds of patients on the diet at JH and they said she has been one of the harder ones to figure out. She shows that the diet has worked but figuring out her metabolism has been very hard. But they have not given up yet. It will take awhile to see if the change will be enough.

Today after a tough morning and feeling pretty helpless we gave her diastat (it had been 6 days and 24 hours since her last dose of the other form of Valium-ativan-.) and amazingly she came out of it. For the first time in 6 days her body stopped seizing. But I am very concerned about her development. In these past 6 days I felt like she has lost a year in development. She can hardly walk or talk normal, she did say some words, but she had been doing so good before this happened. I really hope these things will come back once her brain can rest.
Anyway, since she had refused to eat most of the day we continued and did a 24 hour fast, hoping for something to work. So it is just a waiting game to see what tomorrow will bring.