What is Refractory Epilepsy? Can Anything Stop Her Seizures?

In this video, we answer the question, “What is refractory epilepsy?” Raelynn has tried many, many medications in the attempt to reduce or eliminate her seizures …


  1. Just an FYI some dispensaries have the qualifications to prescribe medical marijuana for children as long as its legal in your area. It could be a faster way of obtaining a prescription since your pediatricians aren't quite comfortable with prescribing Raeylynn THC themselves. I hope you guys find a form of treatment that helps Raelynn

  2. Cbd didnt help my freind Donovin,he tryed the natural way and found the thc helped noticably.Do you know if they make thc drops?I imagine that would be the only way for Realynn,if that was going to be tried.Great vid! The bong part was funny ha ha!

  3. Tons of amazing info, plus a few hilarious stories 🙄😆Raelynn seems like she’s moving her mouth and listening to you talk, at least for part of the time. Seems like she’s gradually shown more awareness and communication ability since when I first started watching, maybe partly just normal progression as she gains (her own kind of) life experience, plus the CBD too👍 and just all the medical care, plus all the family love and care and attention too, of course ❤️

  4. I make my own thc tincture I use cannabis and coconut oil and put an equal amount of cannabis to coconut oil and put it in a Mason jar in a crock pot and then let it sit in the crock pot for 4-6 hours. Then you strain the tincture and bottle it up. I use a spray bottle and it prevents seizures when I get a warning sign sometimes. After the seizures I spray 2 doses in my mouth and it prevents more from coming. You can get CBD and thc flower and do the same process as I said and make it as a 1:1 tincture meaning it has half CBD and half THC. And probably give it through Raelynn's g tube during a seizure, also as a 1x to 2 day treatment depending on how it helps her and get her a medical Marijuana card. I don't respond to CBD for my seizures. THC is what makes a difference for me. Look up how to make coconut cannabis tincture online. I also use nasal bottles for the THC tincture and it stops the seizure too when my stepdad gives it to me during a seizure, the nasal bottles can be bought from Amazon. I hope my comment can help you and Raelynn and I hope if you decide to make a cannabis coconut oil tincture it will help. I use the tincture as a rescue medicine

  5. Kepra didn’t work for us. The only one that work a little was onfi. But it made him so tired it wasn’t worth it. We did Keto, VNS but didn’t help. We are in the same boat Ben is drug resistant. I love it when people tell me I could just blow it in his face. Praying y’all have a seizure free day.

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