When our son Joseph was 3 1/2 years old, our world collided with epilepsy. Joseph began having tonic clonic seizures for no apparent reason. Along with seizures came behavioral changes. Our happy little guy became dark and out of control.
Our faith was tested over the next several months as he would fail 5 medications and regress more and more developmentally. We also tried many other natural things like a gluten-free diet and essential oils. We were willing to try anything! The seizures only got worse. Joseph had 5 different types of seizures and multiple seizures daily. We were desperate for hope.
Since I (mom) am a Registered Nurse, I started researching epilepsy and epilepsy treatments right away. I kept running across scientific journal articles on the ketogenic diet’s success with refractory epilepsy and also found the Charlie Foundation. The Charlie Foundation was the first hope- filled face we encountered in the epilepsy world.
We approached our neurologist with this diet and he basically said, “Yes, it works, but we don’t have a dietician here to help us with it.”We used the Charlie Foundation’s website to find the only hospital in our state that administers the classic ketogenic diet and switched our care to them.
We still met heavy resistance to starting the diet at first from the new epileptologist as her preference was to do brain surgery (or even VNS). Joseph failed the surgical workup and then was allowed to start the ketogenic diet at a 3:1 ratio. We worked really hard to be very strict and exact on the diet as we figured we had only one chance to make it work for him.
After 2 1/2 months and an increase in ratio to 3.5:1, Joseph became seizure free! He was gradually weaned off of all three medications he was on, graduated physical and occupational therapy, and his happy personality came back. After 2 years on keto, Joseph gradually weaned off the diet and hasn’t had a return of seizures even though his EEG still isn’t perfect.
November 2019 will mark 6 years of seizure freedom. Joseph is now 8 years old, starting 3rd grade and doing well—laughing, running and learning. Joseph is still seizure free and medication free! He turns 10 on November 12. He reads well, rides his bike very fast and is even playing basketball this year. All those are things we weren’t very hopeful that he would be able to do before Keto. Just today we let him watch “First Do No Harm”. He really liked learning that Charlie Abrahams was in the movie. Looking forward to many more years of seizure freedom.We thank the Lord first, because without Him doors wouldn’t have been opened to start the diet in the first place. We are also extremely grateful for the Charlie Foundation. Through their work, our son now has a healthy future and our family has HOPE!
Update November 9, 2020
Still seizure free for over 7 years.