The first FDA approved cannabis-derived drug is now in the hands of patients.
Epidiolex was approved in June 2018. It hit the market in the fall after clinical trials showed promise for patients with two rare forms of epilepsy.
For one local family, and Emma Dumont, it’s changed their lives in just a few short weeks.
You’d be hard-pressed to find a 14-year-old who doles out as many hugs as she does.
“Where did the sheep get its hair cut,” Emma Dumont asked as she shared her new joke with TV5. “At the baaaah-ber shop,” she said with a sweet giggle.
That little laugh is like music to Emma’s mom, Jenny.
“It’s like our little girl is back,” Jenny said.
Emma was diagnosed with Lennox-Gastaut Syndrome five years ago.
Child epilepsy specialist Dr. Jules Constantinou at Henry Ford Hospital has been working with Emma for years to come up with the best treatment.
“You have multiple seizure types, you have very abnormal EEG and often you have cognitive delays and attentional and behavioral difficulties. Very, very tough epilepsy to treat,” Constantinou said.
Despite taking a mountain of medication every day, Emma was experiencing at least three to five seizures per week. And Jenny says it’s only gotten harder as she’s grown up.
“It was better knowing she didn’t know what was going on, but she’s getting to the age now where she knows. And she’ll be coming out of a seizure and she’ll ask me, ‘Am I gonna be OK?’ And it takes everything I have not to cry because all you have to say is, ‘Yes, of course you’re going to be OK. I’m right here with you,'” Jenny said.
Emma’s last major seizure was on the bus almost five weeks ago. It’s the longest she’s gone without one in years. This breakthrough is thanks to the first and only FDA approved prescription cannabidiol called Epidiolex.
“It’s approved by the FDA for use in Lennox-Gastaut Syndrome, which is probably the toughest epilepsy that an epileptologist deals with or sees,” Constantinou said. “And another very difficult syndrome called Dravet Syndrome.”
Jenny showed TV5 what Epidiolex looks like.
“It’s not green like marijuana, it’s just a clear liquid and she takes it without fail,” Jenny said.
Dosage varies for each patient, but Constantinou says as little as .25 mL can have an effect.
When TV5 met with Jenny and Emma in April, Emma was still working her way up to her full dosage. Despite that, Jenny said she had already seen a huge improvement.
“Just being able to sit and being able to have a conversation with her and it makes sense,” Jenny said. “You know, because she’s not so drugged out. And that’s a big deal. Especially when you have a 14-year-old who wants to talk, a lot.”
Epidiolex is already helping wean Emma off some of her harsher medications. It’s slowly unmasking more of that sweet, vibrant 14-year-old underneath.
“She wants to help. She wants to do the dishes. She wants to help vacuum and she helps me clean the daycare sometimes,” Jenny said. “She just wants to do all of those kid things. It’s almost like I forget she has any disability at all.”
With her darling disposition and her new medication in tow, Jenny hopes this is just the beginning of watching Emma flourish.
“She deserves to have the best life that we can possibly give her, so anything I can do to make that better,” Jenny said.
Jenny said Emma will have breakthrough seizures, but Epidiolex helps with their intensity and the length of time in between them. She is extremely happy with Emma’s results so far.
Constantinou cautions Emma is experiencing some of the best results out of his patients.
He adds cannabis-derived drugs still have a long way to go, but there is a lot of potential.
