Feb 18, 2008

Lauren’s seizures are continuing despite her being on 3 anti-convulsant medications. Some days are okay and some days she is having over 100 seizures. This past week I got a call from John Hopkins letting us know that we were accepted in their program to start the Ketogenic diet.

The Ketogenic Diet is a carefully calculated diet, high in fat, low in protein, and virtually carbohydrate-free which is used for the treatment of difficult-to-control seizures in children. The diet is a medical therapy and is used only under the careful supervision of a physician and/or dietician. The diet carefully controls caloric input and requires that she eat only what has been included in the calculations to provide 90% of the day's calories as fats. The diet mimics starvation by forcing the body to use fat rather than carbohydrate as an energy source.

Lauren will be admitted to Johns Hopkins Hospital in Baltimore on March 3^rd where Lauren will begin fasting 2 days. On the third day she will receive 1/3 portion or her calories and on the fourth day 2/3. On the fifth day the full diet is given. Her calorie intake is reduced to 75% of her normal intake, and every meal has to be weighed to the gram based on her weight.

This will be a very difficult lifestyle change for our family! They say even one cheerio or crumbs of a cookie can cause a seizure, and she will have to fast for a day to regain control. Anyone that knows how our house looks and runs with six kids knows this is going to be very hard. I am starting to go through every inch of our house cleaning and looking for food (you wouldn’t believe how much “junk food” was in my kid’s closets). We have appreciated all the wonderful food and snacks delivered to our home these past few months, but we ask that starting on March 7 when we come home from Johns Hopkins that we receive no more food. We are going to try not to tempt her with too much good food around. If my older children happen to be at your house playing please feed them all the junk food you want but please just don't send them home with any. It is amazing how Lauren can search out a piece of candy.

We hope that this treatment will help Lauren, About 1/3 of children have their seizures controlled, 1/3 have a greater then 50% reduction, and 1/3 it has no effect or they cannot tolerate the diet. If the diet works they stay on it for 2-3 years. We do not know the results of her metabolic test (which may prevent her from doing the diet) but the doctors at Hopkins don’t think it will be a problem. We will have to wait and see.

Again we thank you for all you have done for us. I appreciate all the hugs and words of encouragement I have received during the brief times I get out of the house.

*I don’t know if anyone has seen the movie…First Do No Harm. It was produced by Jim Abrahams whose son had a similar seizure disorder to Lauren’s. The movie shows what is happening to Lauren and a lot of the feelings and emotions that our family is going through. We have a copy of the movie if anyone is interested in watching it. Just email me at tamiaustin123@msn.com and let me know.