Keto Stories
Nathan
Author: Nathan’s mom and advocate.
I want to share Nathan’s journey which started when he was just 15 months old. It started before he received a formal diagnosis, although we had our suspicions since day one but the doctors would not listen nor do any testing. His seizure was brought on by illness (pneumonia). I had no idea what was happening. I had never seen anyone have a seizure before. Thank God my husband was home that night, he usually worked nights as a cop. He knew immediately what was happening and what to do. We called the ambulance and went to the hospital. Nathan had many tests done and although I am thankful for them it was heartbreaking to watch. The team of doctors were concerned but couldn’t find the answer so they transferred him to another hospital for more testing. THIS was the beginning of what would be many hospital stays, more seizures and even more questions.
He had absence seizures, tonic-clonic seizures, drop seizures, status epilepticus, and Tots paralysis. The seizure activity moved to different parts of the brain. This is why surgery was not a good option and the number one reason why it fails.
We were all suffering. When the doctors finally diagnosed him with Angelman Syndrome they used it as the reason he had seizures and why we had to keep playing the game of adjusting his medication dose or adding more meds.
I had enough! Enough watching my son suffer! Enough watching his face turn blue from holding his breath during a seizure. Enough watching him regress from skills like holding a cup that took him years to learn.
I heard what seamed like whispers of a diet therapy. I asked my doctors about this option and was quickly turned down. “It’s hard to do.” “Nathan needs to have more than 100 seizures a day”, “We need more science “, blah, blah, blah. All UNTRUE! THEY LIED TO ME!
I found a book that had thankfully had information about The Charlie Foundation. The universe led me to talk to Jim Abrahams (of The Charlie Foundation). Our conversations inspired me and I learned that what I wanted so badly for my son was possible!
The diet will be 100 years old next year. Yes, let that shock you! 100 years of reducing and stopping seizures and you probably don’t even know about it or worse, misinformed by someone who directs you away from the diet.
Why? I don’t know, doctors don’t get kickbacks when you buy carrots? I don’t know… I do know that nutritional education for doctors is not sufficient. They get less than 25 hours on nutrition of their entire medical education. I don’t know, I’m not a doctor.
But I am a mother that was not going to let multiple doctors tell me that I had to watch my son suffer from seizures that had the potential to take his life. It’s called SUDEP, Sudden Unexpected Death In Epilepsy. Nor was I going to hold my breath and wait around for anyone or any organization to save us. It was up to me to take action for him.
Nathan is now seizure FREE and has been for several years. I am grateful and I understand that it is the work I do for him daily that continues to make it possible. There is great power in the small thing. To understand this is to understand the compounding effect. I shine this light so you can see what is possible and to help you understand that YOU have the power to make life changing things happen!
Editors note: Angelman’s syndrome is a rare genetic disorder that affects the nervous system which often includes seizures. The 2018 guidelines published in Epilepsia describes ketogenic diet therapies and who they should be prescribed for Angelman syndrome is listed as a condition for which ketogenic diet therapy should be considered early in the course of treatment.
Source: Optimal clinical management of children receiving dietary therapies for epilepsy: Updated recommendations of the International Ketogenic Diet Study Group. Epilepsia Open, 1–18, 2018 doi: 10.1002/epi4.12225
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