Paige took her daughter to Chicago to see a Dravet specialist, who put the child on a ketogenic diet frequently used to treat epilepsy that’s high in fat and low in carbohydrates. Doctors suggested an experimental anti-seizure drug being used on dogs. They were quickly running out of options. “Every mission, every training I was going to do I was called home because she was in the pediatric ICU again or in the hospital again.” Matt, a Green Beret, decided to leave the military. “Even though it was the worst-case scenario, I felt relief just to know.” “I remember to this day it was a relief,” Paige said. After two months, the test came back positive. A neurologist tested her for the SCN1A gene mutation, which is common in 80% of Dravet Syndrome cases. When Charlotte was 2½, the Figis decided to take her to Children’s Hospital Colorado. “Whether it was the medicines or the seizures, it was happening, it was obvious. “At 2, she really started to decline cognitively,” Paige said. They’d work for a while, but the seizures always came back with a vengeance. She was on seven drugs – some of them heavy-duty, addictive ones such as barbiturates and benzodiazepines. In the second year, other seizures take hold: myoclonus, or involuntary, muscle spasms and status epilepticus, seizures that last more than 30 minutes or come in clusters, one after the other.Īt that time, the Figis said, Charlotte was still developing normally, talking and walking the same day as her twin. The first seizures with Dravet Syndrome usually start before the age of 1. Intractable means the seizures are not controlled by medication. The worse-case scenario? Dravet Syndrome, also known as myoclonic epilepsy of infancy or SMEI.ĭravet Syndrome is a rare, severe form of intractable epilepsy. One of the doctors treating Charlotte thought there were three possible diagnoses. “It is unusual in that it’s so severe, but it’s probably something she’ll grow out of.”īut she didn’t grow out of it. “They said it’s probably going to go away,” Paige recalled. Over the next few months, Charlotte – affectionately called Charlie – had frequent seizures lasting two to four hours, and she was hospitalized repeatedly.ĭoctors were stumped. This one was longer, and it was only the beginning. And sent us home.”Ī week later, Charlotte had another seizure. They did a million-dollar work-up – the MRI, EEG, spinal tap – they did the whole work-up and found nothing. “We just thought it was one random seizure. “They weren’t calling it epilepsy,” Paige said.
0 Comments
Leave a Reply. |
AuthorWrite something about yourself. No need to be fancy, just an overview. ArchivesCategories |