Love and Cannabis 0003: Getting the correct CBD dose takes a lot of trial & error

Osiris Stephen and Nina Simmons continue the story of how they are helping their son find relief from Epilepsy with CBD. Today they talk about the challenges they faced determining how much CBD they needed to give their son. They discovered that being one of the first families to blast the CBD trail meant there wasn't a road map to follow. They realized that the best way to isolate what was working and what wasn't working was to track everything. All aspects of their sons life was recorded including how many seizure he had, how severe his seizures were, how his mood changed, how his energy level changed... They found some guidance from The Realm Of Care After a lot of trial and error they eventually got their son's CBD dosing dialed-in but accept that they must constantly monitor and adjust the dose.

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Dan Humiston:
For too many years families have children with devastating illnesses felt helpless as they watched their child suffer. Today they're taking matters into their own hands. and finally finding relief. Treating their child with cannabis. This is one family's story.

Nina Simmons & Osiris Stephen:
Welcome to another episode of Love and cannabis. I am Nina Simone and I am also Stefan and we are the proud parents of alien step.

Nina Simmons:
Hi everyone. Thanks to all. I hope everyone's having a great read. And if you're not and you're facing some challenges there's no that you're not alone. We all have our good days and bad days. So like we said in the previous episode that we're going to get into dosing. So you've got the CBD oil. Now what. What do you do with a different company that online. You might have gotten a recommendation. Well I was going to tell a version of what happened with us. So we did get the oil from. South Carolina and this particular company were really supportive in that they gave recommendations in terms of dosing by body weight and it was basically a formula. And you do elect some little bit of additional subtraction and you come up with a starting dose. I'm not buying that a lot of companies do that but there's a handful of companies that will provide you with a phone service where you can call to get some coffee with dosing or they'll provide you with access to the Facebook group with some type of support group that you can write in question for dosing ideas dosing problems so some companies do do that. Which is great. So we were fortunate that the company that we use. Did that. So then we started off with a particular starting point. And then from there you just monitor. You know how your child's doing. You will look for the mood the behavior the seizure frequency the seizure duration and what I mean by that is that you may have a one moment would have had a child that would have. 15 minute seizures right.

Nina Simmons:
What's the CBD oil did was break it down to three minutes which is huge. So she killed the child was to have the same amount of seizures but they were sure and I don't know if you ever do ever witness a seizure. One minute feels like one hour or so if you can get it down to three minutes. Resisting has huge. Some papers report that. The seizures were the same. The tab was in a better mood and better behavior. That's huge. No. So. All these little things you have to monitor once you start your child on that CBD oil and for some parents they are ok with not having their child have less seizures but they're okay with the mood being better. So for us we saw a decrease in seizures but there was of it we're going to go into that doing a lot of ups and downs though in the beginning we did see a decrease. And then sometimes he is what came back but we did go through a lot. A lot of ups and downs. And what you need to do when you first start is that you have to is a waiting game. You know sometimes soldiers are not really responsive right away and that can get pretty tricky because you know just like a medication you can want to see results right away as opposed to those in the CBD. Some kids is aware some kids to take up to six months to see some results CBB like a pharmaceutical medication. It builds up in your fat cells. So it could take a while for the dosage to build up.

Nina Simmons:
See the results. So think about it does a cup overflowing.

Nina Simmons:
Build it builds up and a build up. It up. It doesn't really feel a lot of it doesn't flush out in your urine like for example either. Maybe a vitamin B6 are available in the CBD. Kind of builds up. That being said sometimes it builds up too much and what we call this is it being oversaturated meaning that it's just too much. We don't know what that was until we saw until we were on the support group and we were Hemp Barons kept saying that kids were having more seizures and the recommendation was to either take the CBD oil or wait for 24 to setting 72 hours or lower the dose that cancer we really understand. I was 9 for a while and get that like that oversaturation it took a couple of years actually to get that but that's panicky too. I didn't happen to every kid. Some kids depending on how they metabolize the oil like this will happen too but it does happen to AIDS and after a time as you know it is a kick in the CBD. For years now though for he overfilled faster than he did when he first took it.

Nina Simmons:
If you get what I'm saying. So with him what we do was B.S. We kind of pinpoint is fine. He's oversaturated. One is that you have little if those small seizures and your behavior will change will get more irritable. So once we see that what we do is we decrease the dosage by about 20 to 10 percent and we leave it there for three days. And then we go back to where we were kind of like. Sends out his receptors a little bit of a.. I had a better time to do that. So it's not there's no magic bullet. I know you saw that he was the documentary. Oh there's those. How is he Jeffrey that happens but typically that's only like 10 percent said both will go through this ups and downs when it comes to doping. But is so low or if that those that TvT even with his abstinence. Oh so them when they were clear all hours and really support this basically now is around. We've been going through there.

Osiris Stephen:
It's been an interesting journey and we're dealing with doping because you get this automatic knee jerk reaction. We see the seizures coming back. And then you start to wonder well should we do more or should we stop. You know I'll be hurting are we helping. You know you start to second guess everything you do and it takes time to figure out like we got to see this path. We're going to see these reactions. I would have to honestly say I've never done so much research on a particular thing than I have with CBD. My son epilepsy. Understanding you know those things that relate to it that would affect him just even just a basic environment sleep water diet you know all those things play a role and when Dena. told me you know it's building up in the sense of you know you're thinking well do we lower the fat. Do we increase is that you know what do we do. And the best thing that we did was just stay consistent. OK. We wrote down things that we notice we may show we had a log like we had notebooks everywhere we tracked every for almost a year and a half two years of just tracking his behaviors tracking his meal intake. In fact we got his power who's at the school with him daily to start documenting his behavior documenting what he's documenting the number seizures he sees because he's in school for eight hours and then when he comes home we wonder what kind of day yet.

Osiris Stephen:
So we know we can what we need to do that evening or the sleep we need to change a thing or if nothing needs to be changed and that we're on the right track. But it's emotional rollercoaster because you will have some good days and then you'll have a hiccup but knowing that you have something to fall back on and looking at your notes you go back and that's what we did we went back to find those rechecking. Right. OK. This day he had very little to no seizures that these were on track let's add or let's take away. And those are things that we did and that helped a great deal especially helping manage our emotions because a lot of times you just thinking you're see yourself like are we doing the right thing and knowing that we're using a plant and natural plant. Mind you it's safe in that sense. But again no CBD no to CBD or the same because you'll find product CBD are there to have a number of ingredients for us we were very steadfast in the idea that we want the least amount of ingredient possible to make sure that we know exactly what is getting and if there's any hiccups we could backtrack. And that's one of the things that we did we just cross-referenced nodes they because I work during the day and that's leaving I get to Dena. need and it's obviously already so. I mean the pills filled me in on his day when he came home from school so we go over notes and we just start to go over information that we pick up things that we've read and basically just really just cross check each other and pretty much do those fact checking in the fact that our son had a great day.

Osiris Stephen:
He didn't have a great day. You know those things then we look at all aspects of his everyday life make sure when it comes to the dosing that we're doing it the right way. And again like Nina stated it's not a magic bullet but it does make a difference. Once you've gotten it down once you've gotten the decision down you understand how it works.

Osiris Stephen:
Because the fact that we had. Some challenging challenging moments where we were either dozing and five or six times a day. There would be at six o'clock in the morning ten o'clock in the morning. Then again at six o'clock at night then eleven o'clock while he's asleep wake him up. Those decisions were certainly exacerbate. We would give it to him regularly just to see if they would subside just to get to the system and sleep is very important for any child is growing. So that told us we may need to change our dosing patterns and we wouldn't have known that unless we went through it and doing that. We learned a great deal and what works and why it didn't work. So there is going to be some trials and trial and error to get to that point. But again stay consistent continue to documenting just recording everything that happened helped us a great deal because we all had a point of reference to go to to turn to and also we had even on a whiteboard. We would write down all the scheduling of dosing so if it changed and we did get a chance to communicate I would see it broken home or mean it would come on and she would see if there was even a change the things that we need to adjust accordingly.

Osiris Stephen:
But is there communication we have that help. I get through the doses. Again the emotions will light up because you see your child. They see a child's shaking their bases go into convulsions auto seizures period. You get nervous and you question yourself but know that you're on the right track trying to get that goal was the thing that we held on to say. We're doing the right thing. We're gonna get better. It's gonna get better. And it did. And you know there's things that laden does now that he just this is awesome is just good. This is night and day to think that we can see even if he has a seizure recoveries exceptional just like I've never seen anything like it where you'd have one or two seizures. They'll be right back to whatever he's going to be sitting down doing some homework. He'll have a seizure. He'll be right back to it like nothing happened. And we test that to you know being consistent and you know being mindful of everything and putting a dosage in plants even when they're sick or we adjust accordingly we're prepared to do it. So we gave ourselves a rule of thumb. Two. Let the system clear out restarted again which is a term that they use to hear call a reboot and doing that a lot of this and slow to clear out whatever excess. foils that were build up in the system and then allow him to you know basically level off and then would continue where we left off.

Osiris Stephen:
But it's not even. Is challenging. They say again. But you learn so much. And that's one thing they'll look back as just like wow we learned so much. We've done so much. But that's the love you have for a child. You do anything. And I've said this before is like if you would've told me I was and b this was only my life 10 years ago I would've told you you're out of line.

Osiris Stephen:
There's no way this would be my life but I've learned to embrace it understand it and I give the plant the candidates plant the utmost respect says that is empowered us to where we can have conversations with doctors where we are sharing information where they're taking information from us and how we dose and they're utilizing that information for patients of their own. In fact one of our doctors our neurologist is actually working with our candidates doctor and she's actually referring some of her patients that she can't help. I get. And so it tells you how much and how powerful this plant is and what it does. And without the help of others in this community of cannabis supporters it's amazing. I mean just love all around people willing to share information people willing to share their oil in just providing opportunity for us to help our challenge. And that's what we're doing. And by sharing our story we just only hope that we help someone if we help one person one child it is worth it. It's definitely worth it.

Nina Simmons:
Yeah. Are we not to that work. It is challenging but I would like to say it is basically has 90 percent seizure control so he's had 100 seizures a day of just twitching where he can't really leave the house. And we had to we took him out. He had to be in a stroller or even the outdoor air quality of life. Now he does everything so you know if he has four or five sometimes none. That is average which is great. From 100 you know so it's worth it. I'm not going to say I'm going to say that is all that is worth it. And like most I is that even the nurse as school as a kid. Remarkable. Thanks we'll have a quick seizure and go right back. He was I've never seen anything like that and all of the CBD. He wasn't a CBT the kind of seizure that comatose in the next couple hours. Not him. He could have a seizure given a big seizure and wake up and go to school. No one would know. It was really amazing. But I didn't get to see what we had. We did use a cannabis Dr. Sharp optician for a while with all this running around. I don't think he did get a cannabis doctor. And then one more thing before we end the episode I wanted to give a quick resource. There's a website called The Realm of Caring and they are not a process. They support Cannabis Science based for research and their website and you can call them I call them and discussions with them. They gave me resources and research if you like to read about CBD research. They're great to become a member. Everything is free. They provide you with dosing tips as well as well in giving recommendations on a CBD companies that they recommend. Very very good non-profit organization. So I think that is it for this episode. Osiris. What do you think you should do the next episode. I have some things in mind.

Osiris Stephen:
I do as well.

Osiris Stephen:
I think one of the things that we overlook that parents when it comes to a child is milk. I won't say diet but I'd see their meal intake and how important it is and how much it helps support CBD as well as a the delightful aspect in what we do. Okay I'm not sure what we.

Nina Simmons:
It. I think that's what we're going to talk about next episode.

Nina Simmons & Osiris Stephen:
Thanks for tuning in another episode out more than cannabis. I'm also Osiris Stephen and I'm Nina Simmons be strong and stay in power.

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