Our First Steps on the Ketogenic Diet
I’m not a doctor and this is only our story please don’t use this as medical advice. Please seek qualified medical advice when using the Ketogenic diet.
Learning about the Ketogenic Diet
We first learned about the Ketogenic Diet in the mid 1990’s at Chicago Children’s Hospital on one of our visits with Dr. Huttenlocker Dusty’s Turberous Scelerosis doctor. We had found out when he was 3 that he was having seizures and after trying every seizure medicine that was on the market at that time nothing worked to stop Dusty’s seizures.
Dusty’s doctors and my husband and I decided to give the Ketogenic diet a try. We went home hopeful that it would work. We started the diet followed the recipes that were very few at the time. There wasn’t a lot of good recipes in the 90’s like there are today. Everything was blan and not like the foods Dusty so loved to eat. We lived in south Louisiana, the food was amazing and contained lots rice and pasta. I worked very hard to switch Dusty to a protein and vegetable based diet. We cut out sugar gradually it took a few months, but we were able to get him into ketosis. By the time he was 10 1/2 we had gained a seizure free status for the first time in his life.
Being Seizure Free
We enjoyed Dusty being seizure free for almost two years. It was hard staying on the diet but it was so worth it! The school Dusty went to had his lunch everyday in the classroom so he didn’t have to go into the cafeteria and be tempted by food that the other students were eating. He wanted the food and snacks but couldn’t understand why he couldn’t have them. He did great in school he was able to concentrate more on his school work and even enjoyed going to school. It was such a good time in Dusty’s life.
Doing Life Keto Style
I learned a lot of recipes that were easy to fix and taste good. Dusty liked the food and didn’t give us a hard time once he got used to no sugar and rice and no breads or pasta.
I have to say family and friends were the hardest part. I loved my family and friends and don’t blame anyone. At the time there wasn’t as much research as there is today on the Ketogenic diet and seizures. We were actually one of the first of his patients to try the diet. This diet hadn’t been used much since the early 1900’s, because of how strict it is. My husband didn’t even understand what I was doing at the time. He would give Dusty what ever he wanted to eat when I wasn’t around. They thought I was being mean to Dusty by not giving him what everyone else was eating. I finally gave in to the pressure and started giving him what everyone else was eating. It didn’t take long and he was having seizures again.
That is when we started trying different medicines to control his seizures again and adding multiple medicines just to keep his seizures to a minimum. He would take handfuls of medicines.He was on two medicines he had been on since he was 3 and we added more. It was tough giving him so many different seizure medicines.
Researching Other Therapies
I started researching how vitamins could help seizures and found ways I could boost his vitamins and gain seizure control. We were able to cut his seizures in half by giving Dusty certain vitimins on a daily basis. I found out which seizure drugs depleted which vitimins and supplemented those vitamins.
The vitamin therapy was successful. I helped doctors formulate plans to give certain vitamins with certain drugs to help with seizure control with some of their other patients. We still are doing this vitamin therapy today and have had a lot of success.
What were doing Today
I still use a modified Ketogenic diet with Dusty I’ll share what we are doing in another post. When we started back on the Keto diet 3 years ago he was having about 8-10 seizures a day and now he has between 1-4 that is success in my book! It’s not perfect, but it is a win for Dusty.
The duration on his seizures went from minutes to seconds. Most of Dusty’s seizures come in clusters of 20 second seizures with a minute or so in-between he will have 2-5 clusters during each seizure.
I have found that he is way more alert on the Keto diet than he was before the diet. Dusty’s reading is much better and his drawings are easier to understand. His cognitive ability is so much better when he is on the diet. Over all he is a happier person and is more engaged with the people around him.
Even using a modified Ketogenic diet can help. It doesn’t have to be so strict. We still are following a Keto modified diet to this day. I have learned how to prepare many foods that we love in a way that they fit into the Keto diet. I have shared a lot of them here on the blog. If you want to learn how to make them go over to my Youtube channel and watch my videos under Keto Family favorites.
I am working on creating the recipes now for the Youtube channel I will have great recipes up soon so your family can try them. If you don’t see them be sure to check back often. I work with Dusty daily and sometimes filming gets set aside but I will get them up. I want to share the recipes that have changed our lives with you all.
Sherry
I’m not a doctor and this is only our story please don’t use this as medical advice. Please seek qualified medical advice when using the Ketogenic diet.
