Events leading to their son being diagnosed with Epilepsy

Dan Humiston: [00:00:05] For too many years families of children with devastating illnesses have 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.


Osiris Stephen: [00:00:33] Ok here we go. Five four three two one.


Nina Simmons: [00:00:41] Welcome to another episode of LA cannabis and cannabis hemp.


Osiris Stephen: [00:00:48] Ok. As soon as I get to one then I must stop. And then you're going to go and say welcome to another episode. OK. OK. All right. Here we go. Oh I'm always so troubled by it. Here we go. Five four three two one. Welcome to another episode of Love and War cannabis. I'm Nina Simone and I'm also respected. We are the proud parents of eight in the bathroom.


Nina Simmons: [00:01:16] Stefan. Yeah. All right. Thank you for tuning in. I hope everyone's having a great week. If anyone's out there facing any challenges they should know that you're not alone. And you know what we all face challenges as well.


Nina Simmons: [00:01:30] So this episode we're going to start on you the beginning stages of our journey with aided and giving CBD oil. A2 had his first seizure. My love of it. After a year old off his team he had his first seizure. I remember that day he was sick.


[00:01:53] He had a cold. And I brought him into the living room and I know that he was a little warm. AND I TOLD ALL SIDES OF THE OH I THINK WE SHOULD GET A COLD COMPRESSES some Tylenol. And then all of a sudden he was laying on me. And then just sign it's going into a full. Grand mal seizure. It was. It was like a nightmare. I remember screaming that have on my long time. I was called No I won't call on 1 9 1 1.


Nina Simmons: [00:02:28] It was like your people say it was your heart some value chest. It was like my heart came out of my chest and my throat at the same time it was like a nightmare. We did CPR. At that point he wasn't breathing. I guess the thing is. Come on come on come on come on. The seizure finally stopped before the mess that there be.


Nina Simmons: [00:02:52] So we should them to the heart. We took him to the hospital. And they said you know did all the tests. Everything came out negative. And they said that you know in young kids when they do get fevers sometimes some kids get seizures. And you know it's going to be okay. And you know just be careful when you get set to really monitor him. I mean we were told by is still on TV but we were like Okay. He's gonna be okay. So we took him home and that was it. Now we know went on. Actually the next day you were actually really buying ofthe way it was like if nothing happened. Yes you had a good day. Then it happened again. Yet another easier. And he did have a fever. Took him to the hospital again and the same thing. Oh there was this fevers again as of realized. OK. Nerve racking. It was scary because it was like the kids. Sometimes you'll have a fever so quickly that you can't even monitor it.


Nina Simmons: [00:04:06] It was like kind of scary like any time is a fever. You have a seizure. We told the daycare people told family members at the temple if you feel a war with Kim McCallum or right away. How would you know that was something that we also had to get used to. You know we did. We always on edge a little bit. But we got used to it. Then the third time the seizures were a little different. The. You woke up and was doing like these like Weir's daring spells. And then. having minutes where it was like he couldn't breathe. They really know what it was. And. I had to go to work that day. When I call those I was checking. it. he said. I think he's having seizures. It wasn't a convulsion one. The first two times but it was this is weird like staring and then like holding its breath type of thing. He said I think I want to take him in. And I happen to work at the same hospital where we were taking him in. So I was freaked out.


Nina Simmons: [00:05:19] Freak out. You know what to even think of it like a time where you just feel so. In shock you don't even know how to how to feel. So at this point we admitted him that he didn't have a fever. And they it all of all these tax effective brain MRI the C.T. scan. And then he delivers it think or EEG. Let us see your brain activity. It was then that he was. Diagnose the epilepsy. So he is a medic. He was put on medication. And then they really didn't stop. The next day the whole maelstrom atmospheres. So then the doctors just say OK increase it. Ok Doctor is still having them OK increases or is this thing where they keep increasing it. He was on the max dose of this one medication. And. I remember this day again.


Nina Simmons: [00:06:31] Quite clear. I went to do a little race like a five K come home and there's an ambulance in front of our building. When you live in Manhattan you see an ambulance. It could be anything but the old apartment is so close. And I'm like is that someone in my building. It was for even. Apparently he had a big seizure with Sirius.


Nina Simmons: [00:06:57] When I was at the race. And we took him. Into the hospital again. And he was hospitalized. This time they said they're going to put him on another medication. And I remember crying my eyes out because I knew this medication was very strong. And I remember thinking to myself I hope it doesn't take your personality away. That is a change in some medications where the kids are sedated or they become another personality aggressive or the lines of one. And I remember clients and my friend who's a physician who came to see us and I said I'm very scared it's hopeless. Don't take my son personality away. I was terrified. The next day. After we came home. Being on the second medication. he did have. The worst. seizure day. It was like this he just got worse. I would say. it was like. we're going to give him anything. At this point. My husband. knew. someone. Was he with a friend of that. Knew a lot about. CBD. He kind of told me about the DVD. And I sort of do my own research. And for me it was I. I hope you say that. Let's do this. At this point I felt like we had nothing to lose. They were just going to be on this slippery slope. You know getting new medications and maxing them out. So I just went on the Internet and started looking for. Different DVD. I really know what I was looking for. I just happened to come up to the website. Really I swear by God's grace. Because I didn't really know what I was doing. And I said. OK. guys let's just try this company. They look OK. They look legit. You have a lab report. They were based out in South Carolina. It. so happened that. there was a company. That was actually a company. There was a store in South Carolina. that had the CBD oil. and it happened to be. not too far for my family. To South Carolina. I call my aunt. crying. desperate. Basically saying. He showed me the CBD oil. I didn't tell her what it was. I told him the cannabis. Let's assume that light industry Hoban law.. said OK. Good right away. That goes though. And that was the start of our CBD journey. Osioris. I was also going to give his perspective. A Osiris perspective of what happened.


Osiris Stephen: [00:10:11] As Nina said it is heartbreaking. To really think about your child's going through something you are powerless to help them because you're just witnessing a body so small just going through these changes especially with seizures that we're becoming so violent at a time when this all started you know I had just finished leaving a dog that I was with for quite some time so I became a home stay home dad. I was spending great time with them with Aiden. And when we first expressed the first seizure you know the doctor said it was gonna be fine as is the call. They happened to have a fever went up and so you know trust doctors and what they're saying. Then it happened again and months later and then another one a month later and then finally he was hospitalized. But during that same time I was doing my own medical issues where I was finding out that my you know my heart rate was dropping low I had to have a procedure done. Only to find out three or four days later my son has a complete grandma and I remember this day. Dena. expressed when she came to the house and is Amira sitting outside. He was running through the hallway you know being in a you know two and a half year old is running through the hallway and I hear a thuds.


Osiris Stephen: [00:11:34] And I stopped hearing his voice and I come out of the and I find him laying there just shaking and he's just shaking my arms and I'm like I scooped him up. I was shaking my head and I didn't know what to do his eyes rolling in the back of his head. His lips are turning blue and I'm trying to give him CPR. I'm yelling at him and feeling like 8 and eight and break up please please. And tears are running down my face because I'm scared you know. You know my son I don't know what to do I'm like I've never frozen before. But then I realized he's having a seizure. And I've seen one before and an adult one. But to the extent of what you see a two and a half year old is so different because they're so small and so helpless and I felt vulnerable and helpless at the time and I just just decided to call nine one one as I don't know what to do. I'm scared and I'm alone. So I call nine one one and the ambulance came and at the same time Nina comes up the stairs and I pressed her. You know that he had a seizure so seizures stopped after about 10 minutes and they said well you know you called and we got to take him in.


Osiris Stephen: [00:12:43] So it's no problem. We took him in during a time in the hospital. He did have another seizure too. And so they admit him for observation. They came back to us and told us dad he has general epilepsy. I was stunned. Was like I didn't know what that meant. Seizures one thing but epilepsy is something I haven't heard before. And so I'm just shocked and they're throwing questions at us and we're like them we're trying to figure out what's going on with our son. How did this happen. How come we didn't know. You know how come we did not know. Really. Just like how we're in this situation and these doctors are coming at it from different angles. Oh I see. He wasn't there. Oh my son he that in all these questions. There's like coming in and out of one ear and I'm sitting there like look I can't answer a question I'm trying to figure out what's wrong with my son. Please tell me what's wrong my son why does he have epilepsy. And they're the only answer they came with. We don't know. That was the only answer that we walked away. We don't know we had to say yes. Then tonight we observe them and we'll run some more tests. Even after all the tests he's just still could not tell us exactly what caused it and how and why he has it. Again as Father you're just feeling helpless and just hopeless. This is my family. What am I to do. Like how do I solve this. Because as a male you know your thing is to solve problems is to come to get an answer is to be that you know the problem solved. Solution maker and this one time I just really had nothing. And I felt so empty and so defeated. And just thinking about like where do we go from here. Like what's next. And doctors are coming in saying well we're going to offer this medication. Oh well you know you've got to take it and then we'll see from there and then if we need to increase it to get the therapeutic level we'll keep doing that. I've always been apprehensive about medication vs. certain drugs because I know the side effects can be long term and sometimes detrimental especially to a child. So I was already apprehensive and I recall during my time while I was home I was doing research on you know the next industry to get into because at the time I wasn't working so I thought you know find out. And that was the time I met a gentleman who was running a association and it was based around cannabis and hemp and he educated me about cannabis and stating that candidates as a medicine is what you think.


Osiris Stephen: [00:15:23] And I'm like. I don't understand because my first cannabis when I was younger is that you saw a crowd you hear you hang out with your friends you're smoking you're getting high. You're being silly you haven't the munchies you know the basically the stoner thought passes of you know what on cannabis was places no. Let's not knowing that a year later that I would be turning to it as an alternative to treating my son and. I recall that calling me to say look I have a friend I met. He told me by cannabis Dena. you know better than that you can actually be used to treat epilepsy and seizures in children. She was like Oh really. I was like yes I think we should go into it. I think we should consider it. All right. So she did her own research being the medical profession that she is in. She did her research and she did buy applications on it. OK. I think we should give this a chance. I mean we have nothing to lose because we both were concerned about the side effect the long term effects of it would have.


Osiris Stephen: [00:16:33] I've seen stories or read the kids who are maybe a long period time start to lose a part of themselves they're sleeping all the time they're lethargic they're not engaging they're almost like lifeless or zombies. I don't want to be doing something negative about it but that's what I've seen and that's what I read and that was one of the things that we really were concerned about happening to our son while we're trying to figure out how to cure him of it because that's been our ultimate goal. How do we cure him not just treat him but how to cure him of this. And that's what's been so you know create this journey for us into the unknown and taking a chance. You know I'm not a religious person but I do have some faith and I look at is like we're going to take a leap of faith into this and give it a shot. You know despite everything else and all the stigma that are coming with it we say it isn't for our son. We have no choice. I can't be concerned what others may see us but think about it especially family. You know that's one of the things that we really couldn't share with our family is what we're doing with our son because we didn't know how they would react to that.


Osiris Stephen: [00:17:44] And so on and so it was one of things that. Change everything along. But knowing that this is going to empower us if we see the change that we're hoping to see. But it was not an easy journey to say the least because once we were able to get the oil from South from Dena. family which we were very fortunate thankful to be able to do so we were able to learn how to dose and how to implement it. But I think that wasn't too sure. Are we going to be using a VPN or we're gonna be using our blood. We like all these things they've run through your mother your mind trying to figure out how are we going to implement this and how is it going to look for our lives but to see your child from ten seizures to twenty to a hundred every day. Literally you're padding the floor you're putting up bicycle helmet on your child because they're dropping you make you know falling on the floor you know you're seeing all these variations of seizures. It's like OK we have no choice. You just have no choice.


Osiris Stephen: [00:18:58] Again like I said I was so fortunate to get this cbd oil the start but it wasn't an easy road. It was in a cut and dry experience because we've had to go through our hardships. I've tried to get to those points that worked and didn't work. But as Nina can express as well about what we. went through. in the dosing aspect of it.


Nina Simmons: [00:19:28] We're going to get into that dosing. On the next episode.


Nina Simmons: [00:19:33] Thanks for tuning in. Another episode of and cannabis. I'm also seven and I mean it's going to be strong and stay in power empowering.




Dan Humiston