The U.S. food and drug administration (FDA) issued on Monday approved Epidiolex Epidiolex oral drug, the drug is a kind of oral medications, use cannabidiol (cannabidiol, CBD) – a compounds found in marijuana, but does not cause high – used in the treatment of Lennox – Gastaut syndrome and Dravet syndrome, two rare forms of epilepsy. (in addition to being the first fda-approved marijuana derivative, Epidiolex is the first drug specifically designed for Dravet syndrome.) In three clinical trials involving more than 500 people, drugs have been shown to reduce the frequency of seizures associated with seizures. Although the fda must reclassify the convention on biological diversity as a non-time-i substance before it can be marketed, GW pharmaceuticals, the manufacturer, says it will be available in the fall of 2018.
This is the story of Maya adash, a 10-year-old girl from south Florida who suffers from Dravet syndrome. Since taking Epidiolex, her seizures and mood swings have all but disappeared, according to her father, Adam Adache.
Maya had her first seizure when she was six months old. She was feeding with my wife, and we noticed her eyes tilted to one side. We think she’s asleep and the baby sometimes eats. It happens again, and then the third time, we start to get a little nervous. We called the pediatrician and he said it was probably a febrile seizure, a seizure caused by fever.
We brought her in, she was coherent, acting like a normal six month old. And then we went home, and it happened again, so the doctor said he was going to take her to the emergency room. That night, she had a major seizure — all the convulsions that people think of when they have a seizure — for more than an hour. They can’t control it. It’s very scary. She ended up in the hospital for four days. The same thing happened four months later. She continued to have seizures, so they began taking her first seizure medication.
She was later diagnosed with Dravet, who was nearly nine years old. About 80 percent of the patients had specific genetic mutations associated with Dravet, but Maya did not. She has just been diagnosed with intractable epilepsy for a long time, which means the drug will not work. No job. Some drugs make things worse – some make things worse – and some of them don’t help.
She has 10 seizures every day. She stared at the spell, and there she would stare, and she wasn’t really coherent. She has a seizure. There were other places where she could make something like sma mouth, but she didn’t get any recognition, and when she came she didn’t remember anything. She also has a lot of developmental delays, language delays and speech delays that are typical of people with Dravet syndrome. It also has behavioral problems. She has mood swings that are almost impossible to handle because they have no rhyme or reason.
When we heard about the clinical trial at nicklaus children’s hospital in 2016, we were in a state of despair, to be honest. We’re doing something to make our parents desperate: you go out and read everything, and you want to make your own education guesses. We learned about the trials of marijuana. I’m not a supporter or advocate of marijuana, and you don’t want people to think you’re giving your kids marijuana. But in the end, we think, there are things that are actually regulated, and a pharmaceutical drug is actually doing the right thing. And it doesn’t give you a high THC, so it definitely makes us feel better from the start. While we do take into account the stigma associated with the name, we are very happy to try the product and we do believe it will help. We were ecstatic about the clinical trials.
It’s really impossible to tell which child will work, but for us, it’s good. I don’t want to say her seizures have been eliminated, because we will occasionally notice certain things, but sometimes we few weeks but have not found a seizure, and we also didn’t see any convulsion. She had trouble sleeping at first and had a stomachache, but the side effects were minor. It’s not a miracle drug, but it does change the lives of our family just because she’s happier. I wouldn’t say it every once in a while, and although she didn’t break down, my other child broke down every once in a while!
Assuming that it is running well, it will have a huge benefit for Maya and her quality of life. It has changed. We put her in the camp and she stayed there all day. This has never happened before. Maya skated as a child, and she struggled a lot here, but it was something she locked. Now she’s better. Just recently, she won a gold medal in special Olympics regional competitions. She can skate for an hour, or two or three times.