Keto Super Stars: Meet Fuad
/By: Keto Mom Tito
What was your main reason for pursuing the ketogenic diet?
Our son was diagnosed with periventricular grey matter heterotopia at the age of 2. A friend told us about the ketogenic diet for seizures and after doing some research, we decided to try it and see if it would work for him. At the age of 3, he was put on the Modified Atkins Diet (MAD) as it is more flexible than the “classic” ketogenic diet. We initially started with a carbohydrate restriction of 20 grams a day, but he is now on 50 grams of carbs a day and still maintaining good seizure control. We check his ketones every morning and before bed to assure he is in ketosis.
What other treatments have you tried and stopped in the past?
Initially after his diagnosis, he was put on Keppra (levetiracetam) to help manage the seizures. Unfortunately, this medication led to irritability and fatigue. The seizures also got progressively worse over time increasing from monthly to every two weeks. We did not want to keep adding medications to manage his condition so seven months after his diagnosis and after trying and failing Keppra, the MAD was started.
What are some of the difficulties you encounter with the ketogenic diet and how have you been overcoming them?
In the beginning, finding recipes he would enjoy was very difficult. It was mostly a matter or trial and error. Also sticking to the extremely low level of carbs allowed daily was a challenge but over the years, we have been able to create multiple meals that are our go to while also trying to create new meals and snacks to try. Our go-to- meals include keto pancakes and turkey sausage, Two Good™ yogurt with berries, and fathead dough pizza crust which is made with cheese, cream cheese, egg and some type of low carb flour. Kitchen staples in our lives include measuring spoons, cups, spatulas and lots of mixing bowls.
What has been the best thing you have seen as a result of the ketogenic diet?
The seizures stopped right away, and he has not had a seizure episode for almost 3 years now. He is thriving and is back to being the curious, fun-loving boy dad and I love.
What do you wish you had known at the beginning that you know now?
I have to say that the Ketogenic clinic team at University of Chicago Hospital is a godsend. The team was with us every step of the way from the beginning. My questions were always answered promptly and thoroughly. I cannot thank his dietitian Stephanie Schimpf enough, she made the whole process bearable for us because she was always there to encourage us, provide ideas with his meals and was there for us as needed.
What is a piece of advice that you would give to families who are thinking about starting the diet or who have just started?
My advice for families who are thinking about it and those who have started would be to please give this diet a shot. It is very challenging, but the rewards are immeasurable. Our son has a chance at a great quality of life because of this diet.