Jaelyn was born September 18, 2008, weighing 5lbs 15oz. She was a full term, healthy baby. At 9 months old, our lives were turned upside down when Jaelyn had her first seizure shortly after receiving a vaccination. At 12 months old, Jaelyn had her 2nd and 3rd seizures following another set of vaccinations. Our doctors assured us these seizures were not directly caused by the vaccines in any way. While we trusted our doctors, we certainly had a hard time believing the vaccines were not the direct cause. When Jaelyn’s 4th, 5th, and 6th seizures occurred shortly after her 15 month vaccinations, we were certain the doctors were wrong and that the vaccines were the issue. But then Jaelyn had her first seizure without a vaccine.
From the time she was 15 months until she was 3 years old, Jaelyn had a seizure with every fever and illness. These seizures would sometimes happen at the beginning of an illness. They would happen in the middle of an illness. They would happen at the end of an illness. Sometimes the illness would only bring on a single seizure. Other times it would bring a cluster of seizures.
Since all of the seizures were provoked by fever, our doctors felt she did not have epilepsy. Time and time again we were told that children outgrow febrile seizures and they can last until a child is 6 years old. Despite this, our doctors decided to put Jaelyn on seizure medications at 16 months old.
A few months after turning 3 years old, Jaelyn had her first unprovoked seizure after becoming overheated. It was this seizure that led us to push for genetic testing. This genetic testing revealed that Jaelyn had a SCN1A mutation putting her on the spectrum for Dravet Syndrome.
By the time we received the test results, Jaelyn had already tried 3 different medications with no success. Shortly after starting her 4th drug, we learned that it was a contraindicated medication. This incident made it clear that our doctor was not knowledgeable enough about Jaelyn’s disease to properly treat her. We immediately set out to find a doctor who specialized in intractable epilepsies.
Our new neurologist immediately suggested that she start the ketogenic diet, a high fat, medically supervised diet. We were very hesitant at first. The thought of having to measure every single meal to .1g was overwhelming. But we had no choice. We had to try it.
The ketogenic diet has forever changed our lives.
Jaelyn began the ketogenic diet in January, 2013 at the age of 4. No one could have prepared us for the first few weeks on the diet. It was exhausting on so many levels. Every one in our family was affected by the diet, not just Jaelyn. Many even questioned why we were doing it. But as the days passed, the diet got easier and easier. We began to see a new child emerge as we lowered her medication. For the first time in a very long time, we began to have hope.
That hope was slightly bruised when Jaelyn had her first seizure while on the diet on March 8, 2013. That seizure was disappointing but we weren’t beside ourselves over it. You learn not to set yourself up for too much disappointment after 5 drug failures. It was that seizure that made us realize that seizure freedom was not a goal we should be looking for. We realized that we would be content if her seizure patterns stayed the same. We would be content to have a happier little girl who was more alert and didn’t have a dazed look in her eyes anymore.
That seizure on March 8, 2013 was Jaelyn’s last seizure. She has been on the ketogenic diet for over 3 ½ years now. She has also been completely off of seizure medications for over 3 years.
While Jaelyn remains seizure-free, she is still affected daily by this disease. Years on the diet have affected her growth. Ambulance rides and hospital stays haunt her. She still undergoes regular testing including blood tests and EEG’s. Each meal she eats has to be carefully calculated and weighed. Her anti-seizure meds have been replaced with syringes of olive oil.
Jaelyn’s progression is not typical for those on the spectrum. We still take life one day at a time. We know that things could change at any given moment. The fear of that moment keeps us fighting for a cure. We share Jaelyn’s story to give families hope.