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Eli’s Story

It was two weeks after Eli”s third birthday, I remember it like it was yesterday, I sat him down on his seat at the kitchen table and I turned to go check on the baby. At that moment, Eli started growling like a bear and crawled up on the table. That was so unlike him! I twirled around and gently corrected him and as I started to help him back to his seat, my hand still on his arm, his back started to arch and then his arms started to raise up over his head, fists clenched. His head went back and all I could see of his eyes were the whites. Then there was the violent shaking. I was in shock for about half a second, then I realized God had prepared me for this moment, I went into medical professional mode! I immediately lifted him up off the chair, which he was falling out of and gently laid him on the floor, on his side in the recovery position and swept the half chewed pretzel from his mouth, as my four year old daughter screamed, “Oh NO, Mommy, is Eli going to die? What do I do?” . All I could muster to say is, “Just pray, Honey! Just Pray!”
I grabbed the phone and dialed 911 and yes, in that situation, it is hard to remember the number to 911.

I immediately told the dispatcher my address and that my son was experiencing his first seizure. I got off the phone with her and he lay seemingly lifeless in my lap and the professional side of me disappeared and a scared mommy showed up. I just started to pray, “Jesus, please don’t take him!! I love him, I need him! Please don’t take him!! I understand if you want him, But….please, not now…not now!”

I quickly called my husband and he started on his way home 80 miles per hour or faster! I think it took him less than 10 minutes to travel the 17 mile trip home.

I remember, I just kept praying, knowing that God was my rock and that He was listening. And knowing that My husband was praying hard for him too!

The ambulance came, he was starting to wake up a little. I boarded the ambulance with Eli and bless the paramedic that was with us, we talked and prayed. By the time we got to the hospital we were joined by my husband. Eli was sleepy, but conscious. The ER doctor checked him out, confirmed he had a seizure, and gave us very vague information about seizures. We left the hospital that evening feeling hopeful that it would never happen again, but boy, we were so wrong.
In the following months we witnessed Eli have more and more tonic clonic seizures, It was unbearable. About four months after his first seizure he was starting to have multiple kinds of seizures: tonic clonic, myoclonic, and atypical absence seizures. He was diagnosed with Myoclonic Astatic Epilepsy (MAE) or sometimes referred to as Doose’s Syndrome. At it’s worst Eli was experiencing a heart wrenching 600-1,000 seizures in a 24 hour period! Heartbreaking to say the least. Medication after medication were given, but to no avail. The meds only worsened the frequency of seizures or they made him so drugged he was like a zombie. We were watching Eli slowly slip away. No more running, no more jumping, no more anything. We were in agony and so was he! I know God has a purpose in all that He allows, but this was painful. I spent many nights praying searching the internet in desperation to find something that would help Eli. I kept hearing in a still small voice in my head that this will be treated with food. I did a number of weird diets and they only made the seizures worse. When the diagnosis of MAE came my research had a direction and we found the Ketogenic Diet as a treatment option. My doctor had said nothing about it. We had failed at least six meds at this point and I knew, I didn’t know why, but I knew this would work! I ordered all the books that I could possibly find and read them cover to cover the minute they arrived and my husband and I were, for the first time in a long time, excited and hopeful.

The excitement was short-lived. The minute I asked the doctor if we could try it, his reply was that we still had more medications to try and that the diet was too hard and the success rate was low. I thought to myself, “lower than the 0% success rate that we have had with the 6 or more meds that you have prescribed to this child and each one worse than the last”. I begged him and begged him, but he was unwilling to yield to my request. With that, my research for a new doctor started! Through a series of events we ended up with a amazing new neurologist that was 100% in favor of the Ketogenic diet. Soon Eli was scheduled to start and I was so excited! I still wasn’t sure why I was so sure this was going to work, but was excited nonetheless. Upon preparing to start the diet I was directed to the Charlie Foundation website and found out about the movie, First Do No Harm. I ordered it, and it came about 4 days before starting the diet. As I watched it, I realized that this diet was a fasting diet and that the Bible in Matthew 17:21 says (referring to an epileptic boy) that this kind does not go out but by prayer and fasting. At that very moment, I knew God was going to deliver Eli from this illness thru the Ketogenic diet and we were about to see a real, true, God ordained miracle! Eli started the diet that following Tuesday, 600 seizures a day, and walked out of the hospital three days later SEIZURE FREE!!!!! Praise be to God our Father!! He had three more seizures in the following three months, but once weaned from all meds he was completely seizure free. Eli has been seizure free for over two years now and we are getting ready to start weaning him. This has been a miracle that we will continually give thanks to Jesus Christ, our God and Savior!

our son is on the keto diet for his seizures, he went from 8 a month before the diet to 2 a month now. he is at 3.0 ratio. He is also on vimpat and kepra which I would love to get him off. My question to you is why do you think your son went seizure free once he got off meds.

I found out about Keto diet by accident on the internet as I researched diet for epilepsy patients. This is for my son with tonic clonic seizures with reactions with Lamotrigine and Keppra. He’s just got an appointment with hospital for an education for keto diet program.
Appreciate if you could pls let me know how Eli is today after being on the diet that helped him seizure free

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