Modified Adkins Diet/Ketogenic Diet

We are plugging along with Ethan's special diet which is an adjunct treatment to his medications. He eats a general fat to carb ratio of 3:1 with 6 small snack meals a day and a goal of 5-6 carbs per snack. We leave room for accidental carbs. The carbs that we give him should be low-glycemic which means below the level of 52.

This is HARD. He hates it. He is miserable. He cries at most meals. He has to be monitored at school. He eats two snacks a day in the health room in the front office and is supervised at lunch. Thankfully, he is able to join his classmates during this time.

We are, however, continuing. What choice do we have? Few meds work on our son. Even the go-to emergency valium-type drugs are worthless. He has severe allergies to Dilantin and Tegretol. Because he is so sensitive to medications, some that would otherwise be considered for treatment are labeled, "too risky." He has been buddies with just about every common side effect of every drug that he has taken. He is saddled with Depakote. Yes, this is the drug that medical personnel secretely have nicknamed, "devil child."

We are not giving up on the diet. Neither, thankfully, is our son. We can do difficult, probably because we have been a part of a nightmare and know the difference.

If you have Epilepsy, Speak Up

This is a blog about a family's experiences with Epilepsy. Epilepsy in childhood is very common - more so than Autism, but rarely do you hear about it in the media. It is my tiny little vision to see a world where people are not afraid to speak up about Epilepsy and bring a voice to their stories. For many who choose not to speak out about their illness or that of a loved one, Epilepsy continues as a private physical and emotional fight for many.

Please, if you or a loved one have Epilepsy, speak up so that we can foster awareness and grow support for what can be a devastating disease.

Introduction

My 7 year-old son has Nocturnal Frontal Lobe Epilepsy. He was first diagnosed with Epilepsy at four months old. After one year he was given a clean bill of health. At about 3 1/2 years, after repeated episodes of periodic beligerant behavior after nap times and preschool teacher observations of his brief periods of "blanking out," Ethan was diagnosed with migraines. Six months later we began noticing that he was having more and more of what we thought were night terrors. On a weekend in September, when my husband was out of town, Ethan had 50-60 unusual episodes in his sleep. I suspected that he was having seizures. He was admitted to the hospital and was diagnosed with Nocturnal Frontal Lobe Epilepsy.

Since that time, we have traveled on a long journey of many peaks and valleys. We have experienced sadness, grieving, frustration and at times, moments of hope. This blog is an interactive documentary of this journey.