Parent calls new drug a sign of hope for children with rare forms of epilepsy

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A Davenport mother is welcoming the decision approving a new medication for treatment of two rare forms of epilepsy.

This week the Food and Drug Administration gave their blessing to a new drug, the first where the active ingredient comes from the marijuana plant.

The medication, Epidiolex is made with the compound known as CBD, which isn’t responsible for the high feeling that comes from the plant. That is created from the THC.

Tina McDermott said her son Ryan was part of the clinical trials for Epidiolex and while the medication didn’t have much impact on reducing his seizures, this move by the FDA is a sign of hope for parents like McDermott and their kids. 

McDermott said this drug though isn’t so much a cure as it is a way to help manage the frequency of seizures. 

McDermott said, “In Ryan’s case and a lot of kids cases, they have to stop seizing. Like, he seizes almost every single day so his brain can’t develop correctly.”

Diagnosed with Dravet Syndrome in 2012, 12-year-old Ryan’s mother Tina McDermott has been a strong advocate for her son, who would have around 20 seizures a day.

McDermott said  “It’s a severe form of epilepsy. Catastrophic sometimes. It’s resistant to medications. It’s very rare.”

Ryan syndrome leaves him unable to walk or the ability to talk. 

After his diagnosis, McDermott said she began to work with others to push for legalization of CBD medications in Iowa after seeing promising results in other states.

McDermott said, “We just kept fighting and fighting and trying to get this CBD, medical marijuana, whatever you want to call it passed for these kids.”

That opened in the door to Epidiolex and getting her son a spot in the clinical trial.

“Instead of keeping, you know, keep giving them pills and pills and Ryan got pancreatitis from one of the pills,” McDermott said. “This is a natural drug.”

While she said it showed promise for other kids, McDermott decided to pull Ryan out of the trial after it failed to make a much difference.

McDermott said, “About as high as we could go with the dose, I wasn’t really happy with it, like other kids responded to, I just wanted to opt out, get out of it and use the cannabis with a little bit of THC in it.”

McDermot said she has since enrolled Ryan in a new clinical trial that’s reduced his seizures to just a few times a day. She added that’s been able to get medical marijuana for Ryan with THC that’s helped to make a difference in reducing seizures. Her hope is the THC will become more common in medication options. 

She also encourages parents, while Epidiolex wasn’t the right solution for Ryan, it could be the hope others are looking for.

McDermott said, “I always say they’ll probably get a chance to meet their child a little bit more.”

According to the FDA, the Epidiolex clinical trials included more than 500 children with Dravet and Lennox Gastaut Syndromes. 

For the medication to become available for patients, federal officials need to change it from a schedule one drug to a schedule two.

That needs to happen within 90 days, and the drug maker of Epidiolex expects to have it in pharmacies by this fall.

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