Project Description

Hayden’s Story

My name is Hayden and I am the first born in my family, I am 9 months old and was diagnosed with Dravet Syndrome when I was 8 Months old. I was born on March 10, 2015 appearing as healthy as can be! On the morning of May 15, 2015 my mommy took me to the doctors for my 2 month well check and my first vaccinations, my doctor said I was looking great and healthy. Around midnight my daddy heard me screaming from my crib and ran to check on me, when he had gotten me out of my crib he noticed my arms and legs were jerking and stiffening. Mommy called the doctor right away and they had told us to take him into the emergency room and we were on our way. I had no fever when we arrived to the hospital, and the jerking had stopped. The doctor wanted to keep me for the night for observation. The next day they said it was probably a febrile seizure and that it wouldn’t happen again.

About a month and a half later, I was taking my usual bedtime bath and I began to have a seizure in the bath tub, 911 was called and the seizure lasted almost an hour and was stopped at the hospital with ativan. This time the doctors ran some tests – a CT scan, MRI and blood test – all of which came back normal, they then transferred me to Hershey Children’s Hospital to observe me for the weekend and perform an EEG. My EEG also came back normal but they had started me on keppra since this was my second seizure and said it was considered epilepsy but may not happen again.

Two weeks after being on keppra my mommy noticed I was jerking throughout the day she called the neurologist at Hershey and had another EEG scheduled, this time the EEG showed abnormal brain activity when sleeping (epileptic episodes lasting around 3-4 seconds) my medication was increased and the neurologist said she would keep monitoring me. Mommy didn’t have much luck with Hershey and my jerking was becoming worse and happening more frequently. She then got in contact with the Children’s Hospital of Philadelphia. My first visit to CHOP they performed a 20 minute EEG but couldn’t capture any of the jerking movements my mommy was talking about so my neurologist Dr. Smith had me admitted into the hospital where they performed a 48 hour EEG, where the movements were captured and the team of doctors ruled it out that these were myoclonic seizures I was having. My medication was increased again, but Dr. Smith had also mentioned genetic testing be done because there were some red flags that raised his concern for a possible diagnosis for dravet syndrome. After a couple more seizures, hospital stays, increase in medication and 3 long months the results were finally in, not what we had hoped for but at least we had an answer. I was diagnosed with Dravet Syndrome. I am currently taking topamax 3 times a day and have been doing really well on it. I have a wonderful doctor and so many people that love and care about me that will be with me all the way as I continue on my journey with Dravet.