Saturday, June 14, 2008
I heard back from Lauren's doctor at Johns Hopkins 6 hours after I sent him the email-so amazing! He wanted us to fast her for 24 hour then feed her 1/3 of her calories the next day then 2/3 the following day. (Pretty much what we did when we first started the diet.) Before we could do this she went into another bad seizure cycle in the morning (Thursday) and we had to give her diastat. The diastat works longer then the versed so we decided to wait to fast her till the diastat wore off. Well it is now Saturday night and she has been doing so good. I am just waiting for the seizures to start up again to start the fast. I will be so upset if she stays good till we get to Hopkins then goes bad when we get home! A lot of people have thought that we were going back to Johns Hopkins this next week because she has been doing so bad lately-this is not the case. We have to go back every 3 months for follow-up appointment then every 6 months after a year. We have had this appointment planned since we left last time. We will keep you updated of what happens at our appointment.
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Sorry that it has been so bad lately. Good luck at John Hopkins. I hope you will be able to find out some more to help her. It's so nice that the doctor show they really care when they reply to her so soon. We continue to pray for Lauren and for you all. You have been doing great hanging in there. Keep it up. We love you...Stacy and family
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