Mark T.'s Story: Parent's Letter Project Epilepsy- Mark's mom

Dear parent of a child with epilepsy,

My son, Mark, was six months old the day our lives changed forever. I was watching him roll around on the floor when suddenly his body went limp for no more than two seconds. It wasn't long after that day that Marky was having these bizarre occurrences several times a day.

Marky had some developmental delays that we recognized very early and he began seeing a developmental specialist (at another major hospital system). I spent several months trying desperately to get this doctor to help us with these episodes. I had described and videotaped them and eventually had detailed journal entries documenting each time I witnessed this momentary loss. In the long run, it became very clear that this doctor was not convinced that there was anything wrong. Marky was a little over a year old when I walked through the doors of Children's National in Washington, DC. I hate to admit, it but the only thing I wanted was for him to have one of these episodes in front of the doctors. It was no more than 45 minutes into the very thorough appointment when my prayers were answered. Right there in the office across from the doctor Marky had an episode. And to my relief the doctor immediately seemed to know what it was. His suspicions were confirmed a few weeks later with the results of the EEG.

We finally had an answer. It wasn't pleasant, but it was something. Marky was having atonic seizures. He would completely lose tone for no more than two seconds. The EEG confirmed that Marky was having 20 to 30 seizures a day. These seizures were terrible and dangerous. They were 100 percent unpredictable. There were no indicators. If we went out to eat we used a scarf to hold him into his highchair. He had to have a special seat in the bath tub. He couldn't walk up or down stairs and we couldn't let him play around any tables. The lists of cant's was too long to even count. Even with taking all kinds of precautions, Marky was never quite safe. He has had stitches five times, he has broken his nose, and perpetually cracked open the skin under his chin. He broke his teeth and lived with black eyes and knots on his head. We did eventually get him a helmet, but he still injured himself often. Other than the seizures, Marky was a very typical toddler. He was full of life and energy and was extremely scrappy. Keeping him from harm’s way was never easy.

The Neurology Department at Children's National is amazing! From the time you check in to the time you walk out you are in such great hands. Marky's neurologist, Dr. Demarest, worked tirelessly with me to try to control the seizures. I sent countless messages and he never failed to return a phone call. Having him on my team has changed Marky's life. Because of our team-like relationship, he was very open about my suggestion of trying the Ketogenic diet. He explained the pros and cons and together we decided that the Ketogenic diet was worth a shot.

Amy Kao, MD, and Laura Cramp, RD, are Marky's Keto team, and they are incredible. We met with them initially and after a long discussion about the diet where they cautioned that using the Ketogenic diet to control seizures takes a lot of commitment and so is often only considered after multiple medications have failed to control seizures. They also explained that because of the tremendous amount of different types of seizure disorders it cannot control all of them. This means that the overall success rate of this diet is pretty low when attempted on all the different kinds of epilepsies. None of Marky's medications were providing any relief. The older and more mobile he got, the more dangerous his world was. Because of that, it was no contest. We felt like this diet was well worth the risk.

On May 6, 2013, Marky began the Ketogenic Diet and by May 10, 2013, Marky was seizure free! They hospitalized him at the beginning of the diet to ensure he was off to a great start. That stay was immensely helpful and prepared us for a lot of the struggles that come along with such a rigorous diet.

The diet is not easy to maintain and it takes a lot of work. Everything is measured and the food is not ideal. But honestly, nothing is worse than the feelings of helplessness and desperation a parent feels at not being able to protect your child. And how challenging it is to have a growing typical toddler who has 13 to 20 seizures a day.

Marky's neurology and Keto team are incredible. Together we are giving Marky a chance to the life that every parent yearns for their child to have.

My best advice to any parent struggling with this or any illness is to be your child's ambassador. Be their voice and surround yourself with a team that will take you seriously and listen to you. Ultimately, having that relationship will allow you to solve problems and work toward a solution for your child.

Sincerely,

Mark's Mom, Tina

Treatment Team

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