Those rotten medications were having unreasonable side effects and we were getting desperate to find something to help our little girl. Our neurologist started talking to us about implants, surgery and special diets.  The funny thing was that I had remembered seeing a movie a couple of years before about a medical diet used in the treatment of epilepsy called, First Do No Harm.  I thought it sounded amazing, but it sure looked like a lot of work and I didn’t think I was one of those ‘alternative medicine’ kind of moms and I definitely wasn’t Meryl Streep!  But, luckily, our doctor was in support of the diet and encouraged us to try it.  Our hospital was one of a few in the country starting up the Ketogenic Diet in their neurology department and our girl would be the third patient through their trial. We decided to go for it! Anything would be better than those insane seizures drugs!

I remember the initial stage of the entire process.  We had to check into the hospital for the week so that our little girl could be starved and obtain something they called ‘ketosis.’  It was a rough couple of days because our little one loved to eat; that was the one thing she did without fighting and now she wasn’t allowed to eat anything for two days! We were lucky the hospital had a play room and classroom to keep her busy.  But, man we were exhausted!  We took turns keeping her busy and found comfort at the local Ronald McDonald House with other parents. Once she could finally eat, her meals were measured precisely in grams for the amounts of protein, carbohydrates and fat that she required.  At first they were tiny and she gobbled them up in an instant!  With every meal she had to chug down a cup of heavy whipping cream-not very appetizing to me unless it’s whipped and accompanying a plate of ice cream.  But, we started to wean her off her seizure medications while in the hospital and we didn’t see any evidence of seizure activity.

Thus began the next chapter in our lives.  We were like hip yuppie drug dealers with our little gram scale sitting in our tiny kitchen, weighing all of her foods to meet her diet specifications.  We had to prepare and pack her lunches for school and warn the teachers that if she got a hold of any candy or other foods, she could have a seizure.  It was crazy, but that little girl was wonderful about it and her teachers were so accommodating and patient. We had to try different things with her whipping cream to keep her interested.  So we added food coloring to it, whipped it up, froze it and made it look like ice cream.  We also had to keep our eyes on her even more to make sure she didn’t get into any food that we had in the house. We even had our little man help us out. He would watch his sister and inform us if she was getting into the refrigerator or pantry. “Mommy, Nony is getting a cwacka, look, look.” We felt so bad that we would often wait until she went to bed before eating our own dinner.  We even made up a song that we would all sing to her about her ‘special diet’ so she wouldn’t have “seizures anymore and take that nasty medicine.”

We were happily seeing some improvements in her behavior and she seemed to ‘get things’ much easier. Her language and speech improved and she even looked better and healthier; her face was rosier and her eyes more vibrant. Maybe being off seizure medications freed up her mind just enough to make sense of her world.  She still had to be on medication for her behavior, but we saw fewer problems with her and things were finally more under control.  Our little girl was six, and Baby Boy was three, and we were living for this diet and all the hope that it held for us. Her seizures dramatically decreased and she was making small improvements at school.

School Journal Entries: (Elaine Stephens, Maggie Grove, Andrea Siebert and Paula Josey)

February 8^th, 1999:  Good day-it was hard on all of us not to feed her.  She just looks so much better, behavior has been much improved and she is able to stay focused on an activity for longer than a split second.  Her speech teacher said it was her best speech session for months and we all got big hugs!

February 9^th, 1999:  Everything going just fine.  It was so nice to have the sweet girl again.  She even colors calmer.  She ate lunch in the room with Maggie and went outside when the others had their snacks.  How should we handle the Valentines’ party on Friday?

February 17^th, 1999:  L has been orally spelling her name again, she made an “L”, while coloring she chanted “stay in the lines”, and she told Andrea that she was going to “eat in two minutes”.

February 19^th, 1999:  Maggie and I think she is doing and looking a lot better.  She sat quiet in computer class while the teacher read a book.  Her manipulation of the mouse is getting slower and more precise too.  We have noticed that today and yesterday she has started to bite her shirt, it’s probably related to being hungry, lots of things have been going in her mouth lately.

March 9^th, 1999:  L has had a very good day today.  She has been busy telling us about the many things that catch her interest.  She especially enjoyed listening to nursery rhymes this afternoon.  She ran an errand with Ms. Stephens today and followed directions well. 

March 22^nd, 1999:  She didn’t want to eat her lunch today, but Maggie was able to convince her!  Yes, we will get her dressed up for you so you can get those pictures with Baby Sam!  She has been doing more work independently lately and actually wrote her name-I did not help her!

March 29^th, 1999:  L has been very quiet today and she didn’t have her snacks.  She did a great job in PE.  She worried us a little but maybe she’s so quiet because she didn’t sleep good.  I’m sending you a menu in case you want to match her meals with the cafeteria.  She doesn’t seem to mind that others are eating different food. 

May 6^th, 1999:  She had a really good day although I think she has learned to push my buttons!  I worked in the room at recess and Little Miss decided to stay on the play equipment instead of lining up, she made me come up on the bridge to get her and she was grinning from ear to ear the whole time!  It was hard for me to maintain my MAD face!

May 7^th, 1999:  L had a good day.  Her high school buddies came and she played a game with them.  Her high school buddy said he was really impressed with how well she was talking and interacting with him.  She put a 60 piece puzzle together too!  Maggie is going to be out another week to spend time with her son, it’s been hard on her since her husband passed away.  L asked if she “was coming right back.”

May 26^th, 1999:  Great day, she got a special award from Mr. Garner.  Wish you could have seen her face whey they called her name!