Kate’s Story

Chet’s Story

“In 1945, at age four, I was put on the ketogenic diet for absence epilepsy by Dr. Samuel Livingston at Johns Hopkins Hospital. I remember the office on St. Paul Street and the EEG inside of a cage like room and copper wires glued all over my head. I think I fasted for about a week and was given liver and spinach for my first meal. I remember taking cardboard containers of mayonnaise to school for my lunch and my mom weighing everything on a scale. My favorite meal was a hot dog on a string in a Thermos bottle of tomato soup. After a couple of years the diet was stopped and I never had another seizure. I graduated from the U.S. Naval Academy and had a twenty year career as a Naval Officer, followed by several years as a realtor. Today I love to go to Navy home football games and am a “carbohydrate junkie.” I’ve had no growth problems, cholesterol problems, stroke, heart attack or atherosclerosis trouble. I would encourage any mother to go for it as far as the ketogenic diet is concerned.”

Nevin’s Story

I truly believe The Ketogenic Diet not only saved my daughter’s cognitive abilities, but also saved her life. Nevin’s first seizure was at 10 months of age. She was well-controlled on one medication until her seizure pattern changed at the age of four. She was having 500 or more seizures per day, most of them sub clinical and very unobvious. After failing a total five drugs, dealing with the horrid side effects of multiple medications, two experiences with status epilepticus and the unwelcome addition of four new seizure types in a matter of months, we insisted the next step for treating her epilepsy would be the Ketogenic diet.

On day two of the Diet, I met my daughter for the first time in nearly 10 months. Even though Nevin was still having frequent seizures, she was so affectionate, animated and full of chatter. The diet was challenging the first two weeks as we learned the protocol, but it was so much easier than portrayed to us by medical professionals.

It was much easier to prepare special meals than to watch my daughter suffer from the adverse side effects of medication cocktails or watch the seizures rob her and our family of a ‘normal’ life. Nevin loves her ‘magic’ diet. She quickly became self-directed and even helps prepare the meals. Nevin became seizure-free six months into the diet. She has been on the diet for 16 months and successfully weaned two of her three epilepsy medications. The last medication wean will start in April 2009. Nevin is developmentally age appropriate, attends public Kindergarten, enjoys listening to music, dancing and even advocates for epilepsy in our community.

UPDATE 11/2017…

This past September marked 5 years since Nevin was weaned from the Ketogenic Diet that erased her epilepsy.

Nevin is a freshman in high school, plays on the high school golf team and is a member of the choir. She is excited to be driving next year. Her health has been amazing and she is 8 years seizure free. We are eternally grateful for the gift of the Ketogenic Diet.

Caden’s Story

Our son Caden had his first Grand Mal seizure at 2-months-old. We discovered he has a sodium channel mutation and within a few months he had multiple types of seizures. He had myoclonic, partial, focal, absent, drop, and generalized seizures. His Grand Mal and partial seizures didn’t stop on their own and sometimes lasted more than an hour long even with multiple doses of diastat. Combined he has 30-150 myoclonic, focal, absent, and drop seizures each day. Caden was also diagnosed intractable, meaning medication doesn’t control his seizures. Caden was developing normally despite the multitude of seizures but we knew that it was only a matter of time before we started seeing delays. Caden is now 14-months-old and we just started the keto diet. Amazingly his seizures stopped the 2nd day he was on the diet. It had been months since he had a seizure free day and almost a year since our journey started. Last year we were hospitalized more than 30 times for seizures and tried dozens of medications. This year, with the keto diet, we are hoping to be able to start enjoying life again! The diet is difficult it’s been a life style change for our family but it’s given us HOPE!

Macie’s Story

Meet our Keto Kid – Macie. In her family’s eyes, she is a hero by any measure. She has a rare metabolic condition called GLUT1 Transporter Deficiency Syndrome. In GLUT1 ds patients, there is a problem with the way glucose reaches the brain and it is left starving for the energy it needs to grow, develop, and function properly. Ketones give the brain an alternate fuel source, and although the ketogenic diet doesn’t completely resolve the issues and symptoms associated with GLUT1 ds (seizures, movement disorders, speech/language and developmental delays), it can give a great deal of relief and improvement. Even though she is not seizure free, Macie is doing well today – but the path that led her to this point has not been an easy one. Although Macie began having seizures around her first birthday, it took nearly 10 years to get the correct diagnosis for her. We stumbled along for a very long time looking for answers in the world of intractable epilepsy and were desperate to find something to help her – a dozen drugs tried and failed, alternative treatments, even the VNS. Macie’s seizures numbered in the hundreds on most days and left her in a fog that affected every single aspect of her life. The only treatment that ever offered lasting relief and improvement has been the ketogenic diet. We had turned to the diet earlier in Macie’s life, long before the GLUT1 ds diagnosis, when we felt we were out of options. We had to search for a neurologist willing to offer it, and ended up driving 4 ½ hours from our home to find one. She showed dramatic improvement from the minute she got into ketosis, and she was able to come off all medications within a couple of months. We felt as if we were witnessing a miracle as we watched our daughter’s coordination, balance, concentration, speech, alertness, and seizures improve. The ketogenic diet is a way of life for a very long time for GLUT1ds patients – most continue some form of it through puberty. It takes a commitment from the whole family, and it isn’t easy – but that is relative. We’ll take the diet any day over helplessly watching our child lose so many moments of her life to seizures – there is nothing easy about that. In a way that is difficult to put into words, the diet is actually empowering to us as parents in that we feel as if we are doing something – with our own hands in addition to our hearts – to help Macie.

Doug’s Story

My battle with epilepsy began suddenly, progressed quickly, and ended abruptly with the help of the ketogenic diet. I was a healthy child, developing normally, until the first seizure occurred when I was three years old. This was just three weeks before Christmas, 1959. During the next two months, two long hospitalizations and five drugs failed to control the seizures. In February, my parents chose to escalate my case to the Mayo Clinic, where I was admitted for a few days and discharged on a new drug regimen. In summarizing my case, the physicians noted that I was a candidate for the ketogenic diet. I was home from Mayo Clinic a little more than a week before developing ataxia, a loss of muscle control and coordination, as a side effect of one drug. My parents rushed me back to Mayo Clinic for another long hospitalization. The seizures were now coming several times per hour. The doctors proposed the ketogenic diet now, but my parents opted for one more drug trial, which also failed. In July, I returned to Mayo Clinic for a third time, for administration of the ketogenic diet. Shortly thereafter, we moved to the East Coast, and my mother managed the diet with little or no external support. It was act of quiet heroism that changed my life. Then there is a long silence in my chart because I left the hospital permanently seizure free. Three years later, my mother and I returned to Mayo Clinic to obtain permission to end the diet. The doctors concurred. I have continued to be seizure-free for the decades since then, and continue to be in good health. I have earned a post-graduate degree, and have worked in the information technology for my entire career. At mid-life, I can see no evidence that the unbalanced nature of the ketogenic diet caused any long-term side effects. In 1994, a series of unexpected events put me in contact with the Charlie Foundation. I dug into my past to understand my own medical history, and helped the foundation with early publicity. In the years since then, their work has helped spawn research into alternatives to the ketogenic diet, making diet solutions available to a wider age group of patients. In 2007, my teen-age daughter benefited from this research when she gained control of absence seizures using the Modified Atkins Diet for Epilepsy, a regimen which was developed at Johns Hopkins Medical Center, but can be initiated without hospitalization. Thank you, Charlie Foundation, for ensuring that others get offered the same treatment options that I needed, a treatment that provided a complete cure of my epilepsy! Doug Foster

Blake’s Story

Blake was diagnosed with myoclonic absence epilepsy at age 2. Throughout the years Blake has been hospitalized several times with countless EEGs, MRIs and even a lumbar puncture when he was six years old. He had genetic testing that revealed a gain on chromosome 3 (trisomy 5) with no successful treatment until the ketogenic diet. Before the ketogenic diet, Blake was having 5 to 20 seizures daily. He had been on Vimpat, Zonegran, Depakote and Keppra at different strengths without any improvement. He met with a ketogenic dietitian at the Medical University of South Carolina (MUSC) for the first time in September 2013 and was admitted to the hospital to initiate the diet a few weeks later. At that time he was on Depakote and Onfi but was still having multiple seizures daily. While the high fat content bothered Blake at first, he triumphed through the admission and was a true champion with the ketogenic diet. Two weeks after discharging from the hospital, Blake was seizure free. Blake began excelling in school in regards to focus, comprehension, and even got straight A’s. He also joined the school chorus as one of his favorite pastimes is singing. In addition he was successfully weaned off of Depakote and his seizures were well managed with Onfi and the ketogenic diet. Despite some complaints of hunger and unintentional weight loss that led to calorie adjustments, Blake continued on the ketogenic diet with excellent compliance until July 2014. At that time, his neuro team attempted to wean him off the diet slowly but unfortunately Blake’s seizures returned. Blake resumed the ketogenic diet and understands that it is the key to his seizure freedom. Blake thanks God for being his strength throughout his epilepsy journey. Blake has a new meaning of life and has learned that food is not the center of everything. The ketogenic diet has allowed Blake to really love his family and friends. He can see how important his well-being is to everyone around him and cannot wait until he can be seizure free forever and be able to drive when he is old enough.

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