otter's epilepsy story

On April 27, 2007 my son, 3 yrs at the time, had his first tonic-clonic seizure (grand mal,) with another following about nine hours later. No tests were done because the seizures were thought to be contributed by him eating a flower. He was fine for a couple months.

On June 9, his eyes rolled and his head shook a little. I thought it was weird, but had been so paranoid I dismissed it as nothing. I think my husband was beginning to think I was crazy. Our friends noticed a few others in the following weeks. I took him to our doctor who made an appointment to see a neurologist a month later. I never knew there were different types of seizures, so I was shocked to hear the little episodes could in fact be seizures.

On July 1, he had another tonic-clonic. We took him to see a pediatrician & neurologist and an EEG was done. He had 4 hours of sleep, and had three tonic-clonic seizures the day of his EEG. The pediatrician prescribed Valproic Acid and sent us home. He was diagnosed with epilepsy after the EEG. He began having drop seizures, but neither the pediatrician nor neurologist would confirm that. After a few weeks on the Valproic Acid with no change in seizures, we actually met with the neurologist for the first time. He COMPLETELY misdiagnosed him with complex partial epilepsy, which I didn’t agree with at all. He was definitely not having complex partial seizures. He was then put on Trileptal, which made the seizures worse.

On August 7, we went to a Children’s Hospital. They diagnosed him with generalized convulsive epilepsy, having myoclonic, akinetic, absence and tonic-clonic seizures. He had drop seizures most often. They prescribed Depakote and Zonegran. The seizures continued.

On August 22, he had two tonic-clonic seizures. We took him back to Children’s and our neurologist ordered another EEG. An MRI was done which was normal, but the EEG showed patterns similar to the Lennox-Gastaut Syndrome. Our neuro replaced the Depakote with Keppra, and increased the Zonegran. Austin was then diagnosed with intractable epilepsy, (epilepsy that’s difficult to control.) He still continued to have seizures daily. He wore a helmet because he had drop attacks so frequently. The next medicine our neurologist wanted to try was Topamax, but I had heard horrible things about it and didn’t want him on it. I began researching the Ketogenic diet and found a link to atkinsforseizures.com. I emailed his story to a neuro at Johns Hopkins and he said it sounded like he had Doose syndrome, or myoclonic astatic epilepsy. We arranged an appointment to meet with the neuro to start the modified Atkins diet. We started the diet on October 19, 2007 and he was seizure-free by October 23.

In November 2007 he had another tonic-clonic due to a missed med dose. In late December he had four tonic-clonic seizures, which we think were possibly caused because he was fighting a viral infection, but we’re not for sure. Either way, he has been seizure-free since and we are so grateful for finding this diet. We contribute his healing to our Awesome God, and praise Him for our miracle!