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 …
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
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!
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 ❤️
Wow I have heard of this type. Bless her. Her little cute face she look like she's listening. I'm on sodium valp and keppra. Binky was going on pheno b
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
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.
Just wondering if she had depakote.
lamictal extended release has worked for me and I’ve been on it for years
Out of curiosity Are u guys looking for her to have brain surgery in the future or do u feel it’s pointless being that she’ll still have seizures?
I have the same thing. I’m on Keppra, Trileptal, Lamictal, Phenobarbital and Ativan
wwwww
I love the way y’all advocate for her.
Your comments are turned off in the video you just made so I just wanted to say I am praying for you
I know how she feels because i have epilepsy
hey love you all sending love
I had surgery myself. I had three-fourths the right side of my brain removed at age 6. I have only had one seizure since and I’m now 19.
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
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!
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 ❤️
I am sorry that nothing has worked
Sorry I am late but how is raylen doing today
What works for some people might not work for other people I found that out
What is VNs used for I’m just curious because I’m not sure what it’s used for
What is CBD is that a medication four seizures I was just wondering because I’m not sure
Anotha name 4 that is intractable epilepsy. I just luked it up. Hope uz guyz are ok? Sendin love & hugz x
Does she also have CP????? I have CP thats why I'm asking
Wow I have heard of this type. Bless her. Her little cute face she look like she's listening. I'm on sodium valp and keppra. Binky was going on pheno b
Bless her heart. The stories about the mary Jane is hilarious! She is so strong.
Keppea I believe is what mainly adults are taking compared to children.
I'm going to make a video all about refractory epilepsy DEDICATED to Raelynn
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
I hope medication works for her or hope she can get the medication can work
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.