Izaiah Ruiz, of Conroe, Tex., was diagnosed with Dravet syndrome, a rare form of pediatric epilepsy, when he was 7 months old. The Dravet Syndrome Foundation estimates that anywhere from 1 in 20 to 1 in 40,000 children have the condition. Causing hundreds of seizures a day, it is commonly misdiagnosed.(Photo courtesy Lori Fountain)
Six-year-old Izaiah Ruiz has countless seizures a day due to a rare form of pediatric epilepsy. Now, a marijuana-derived drug may help him and his family avoid the debilitating attacks.
Izaiah had his first seizure when he was just 2 months old and was diagnosed with Dravet syndrome, a condition that begins in infancy, five months later. The disease, also called Severe Myoclonic Epilepsy of Infancy (SMEI), is intractable, meaning it does not respond to any currently available treatment. While 60 percent of epilepsy cases do respond, 40 percent, including those linked to Dravet syndrome, do not.
When Izaiah has a tonic clonic seizure the type with muscles spasms that most people think of when they hear the word seizure his grandmother, Lori Fountain, follows a military-like procedure to calm and monitor him.
Immediately, its getting on the floor and laying him down on his side, Fountain, of Conroe, Tex., told FoxNews.com. I grab the oxygen and put the oxygen on him. I want the airflow to keep going to the brain and other parts because when you have a seizure, everything shuts down in your body. You also quit breathing.
I grab my phone and I look at the time, and I keep up with the time and I watch him, Fountain continued, rattling off the directions from a well-rehearsed memory. Then he will go into the shaking part, and I watch and put the (heart) monitor on him.
When the seizures last longer than four minutes, Fountain administers Diastat, a rectal medication for cluster seizures. She has the paramedics, whove known Izaiah since he was a baby, on speed dial.
Dravet syndrome and Epidiolex
Most children with Dravet syndrome are having hundreds of seizures a day, Angus Wilfong, a pediatric neurologist at Texas Childrens Hospital, told FoxNews.com. Some are subject to status epilepticus, and thats a life-threatening condition.
Wilfong is the principal investigator for the trial of a new drug that may help treat Dravet syndrome, which is genetic and currently has no cure. The treatment, called Epidiolex, has transformed the lives of patients with Dravet syndrome without eliciting unusual side effects, Wilfong said.
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Scientists find promise in purified marijuana molecule for pediatric epilepsy treatment