[00:00:00] Jennifer Simmons: I would definitely say through it all, you just as a parent, you have to trust your gut. Nobody knows your child better than you. And although medical professionals definitely have more knowledge you, what your child is feeling. And you know how differently they're acting or symptoms or signs.
[00:00:21] Jennifer Simmons: Don't ignore those and don't be made to feel like they're not true or warranted. You have to be your own advocate. And you definitely have to be your child's advocate because, nobody else will.
[00:00:35] Dori Durbin: That was the voice of Jennifer Simmons. When you're a parent whose child experiences an illness or a diagnosis for the first time, it can be quite scary. What if that diagnosis was epilepsy, there would be many questions running through your mind, including things like, is there anyone out there who can understand what I'm going through? Are there medicines specifically that I should be using or how do I know if that medicine is really working? [00:01:00] Or maybe there's a non-medical way to handle this,
[00:01:02] Dori Durbin: But how will I know if it's actually
[00:01:04] Dori Durbin: healthy? Answers to all these questions and. And much, much more. Jennifer will cover next.
Today's guest is a wife, mom of two boys, a former event and fundraising planner for the leukemia and lymphoma society in Washington, DC, before relocating to Pennsylvania. Currently, she is the author of the book, a mom's will. A story of hope and determination in overcoming Will's mysterious illness.
She offers support, encouragement, and resources to families living with epilepsy. Welcome to the show, Jennifer Simmons.
[00:01:38] Jennifer Simmons: Thank you so much for having me, Dori.
[00:01:41] Dori Durbin: Thank you for being here. And your story, oh my gosh, like I started reading it on Amazon, and I got through like the first page or so, and I welled up with tears.
[00:01:52] Dori Durbin: I just, your story is so powerful, Jennifer, and your heart as a mom is just so huge. So let me just ask [00:02:00] you, and I asked you this earlier, and I'm asking for the audience to know ahead of time, currently is your son stable and without seizures?
[00:02:08] Jennifer Simmons: He sure is. He sure is. I'd love to say tell everybody before they read the book, because it can be a tearjerker, but if you go into it, knowing that there is a happy ending it makes the whole book that much more heartfelt to read and to know that there is hope is all that that people need.
[00:02:28] Jennifer Simmons: And he is doing wonderfully. He is now 18 years old and in college. and doing in great health, no more meds, no more seizures. He really has been through it and he is on the other side and he is so grateful for his good health and grateful for every day and really lives. Life to the fullest,
[00:02:50] Dori Durbin: which is a huge thing.
[00:02:53] Dori Durbin: We were talking about this earlier. You like, as a mom, that's all you want for your kids is to feel fulfilled and like [00:03:00] confident in their lives and to enjoy who they are as people. And that's a huge thing with kids with seizures. It's scary. And I know Yeah, go ahead. Talk to us a little bit about like the beginnings of the seizures and how that all unraveled.
[00:03:16] Jennifer Simmons: Sure. Sure. Yes. So his very first seizure was when he was two years old and it was a very unfortunate location. We were in a at a cabin doing some fishing and hiking very far from civilization and any type of hospital. He had his first seizure and we really had no idea what was happening. It was terrifying and that's how his whole...
[00:03:40] Jennifer Simmons: health scare started. The doctor, when we finally did get him to the hospital, they found that he had an ear infection. He was two years old. And that they claimed that his fever spiked and that caused the seizure. So we took that information and, we followed up with the doctor after we were released from the hospital and we thought, [00:04:00] okay that's what happened.
[00:04:01] Jennifer Simmons: And that's a common, it's called a febrile seizure. That's that happens in people. And that's a, we took that as that's all it was and went about. went about our lives. About two years after that, he started experiencing a couple different seizure types and they came back with a vengeance.
[00:04:19] Jennifer Simmons: And then we, got the epilepsy diagnosis and started on our journey of medications and treatments and failing medications and failing treatments and getting worse. And Losing weight and losing tight, all types of coordination and really regressing as a four year old back to a toddler.
[00:04:40] Jennifer Simmons: And it was very difficult.
[00:04:42] Dori Durbin: Now you were telling me before we started that there are different seizures, obviously like for epilepsy and different types of epilepsy but Will was actually experiencing multiple kinds of seizures. Can you tell us a little bit about those different
[00:04:55] Jennifer Simmons: kinds? Sure, sure.
[00:04:57] Jennifer Simmons: And to most people and just anybody [00:05:00] who's not a medical professional, some of the seizures, one wouldn't even recognize he would have one sitting at the dinner table and I would say, are you all right, buddy? And my husband would say, what just happened? I said, he just had a seizure. So sometimes people wouldn't even notice some of them.
[00:05:15] Jennifer Simmons: Some staring would happen, some eye twitching, some jerking of hands, arms, legs. He did a head drop type of seizure. And then, of course, he also had the grand mal or tonic clonic seizures, which are what people think of when they think of a seizure. So he had pretty much every type.
[00:05:34] Jennifer Simmons: That you could read about on a daily basis for a while there. So it was hard for his medical team and all the doctors also to treat because different medications treat different types. So when you're having So every type it's hard to figure out what combination of medication could, potentially stop the seizures altogether, which we found no combination.
[00:05:59] Jennifer Simmons: After about a [00:06:00] year of trying multiple medications and combinations and, ramping up and weaning off we never found a happy place where his seizures were put to rest.
[00:06:12] Dori Durbin: And I think what, if people don't know this, a lot of the medications tend to sedate the kids or like you said, ramp them up.
[00:06:20] Dori Durbin: And so then it complicates them because he's so little to begin with. And you have those kinds of behaviors as little kids. So it's like, how do you sort that out?
[00:06:29] Jennifer Simmons: It was definitely difficult. He'd have some medications that made him almost like a zombie. He didn't want to. And we're learning to read and learning to write and trying to go to preschool and he had no attention spam, which a four year old boy once when healthy, that's a tough thing to, but these medications floating in his brain.
[00:06:48] Jennifer Simmons: And then we'd come off that medication because of those side effects and go on another one that would make them hyperact. So then the teachers were having trouble, having him pay attention because he was all over the place and [00:07:00] you just, you felt terrible because you knew. That wasn't your child and that the medication was causing, extreme side effects one way or the other to, so to try to find something that worked.
[00:07:11] Jennifer Simmons: For the seizures and worked for just quality of life. It was next to impossible. So that's when we started looking at other options because we knew the medication in most cases for him and for his disorder, the medications were making his seizures worse.
[00:07:28] Dori Durbin: So a couple of questions. So one of the things that I know that you mentioned was you did some journaling and you were able to find somewhat of a pattern and then what were the other options that you could do besides
[00:07:40] Jennifer Simmons: medicine, right? So the journaling, started once the side effects started and then the doctors we were trying to pinpoint What was causing what? So was the seizure itself causing the side effect? Was the medication causing the side effect?
[00:07:54] Jennifer Simmons: Was it a combination or was he just for and that's how he was going to act. So [00:08:00] we got to the point where we literally could not sort it out. So we started journaling and time lining. This is when he took the medication. Here's when the behavior happened. Just to try and get an idea of you try everything at once because you just want the seizures to stop and then you're not sure what's working or what's making them worse.
[00:08:18] Jennifer Simmons: So that was, it was a vicious cycle for a while trying to figure out what was causing what and then I think we finally, once we tried maybe the 7th or 8th medication and combination that the medical team and my husband and I, after doing all our research came together and realized. The medication was not helping him.
[00:08:38] Jennifer Simmons: And at that point, we were told there's nothing more they could try because we had exhausted all of the medic medication all the drugs that are, marked for the types of seizures he was having, and nothing was stopping them. He was having hundreds at this point a day. So we were at a loss on what to do.
[00:08:57] Jennifer Simmons: And we had read some. Medical [00:09:00] journals and talk to some other doctors about diet and how diet could potentially help with seizure control. So there have been some studies, mostly out of Johns Hopkins about a Atkins diet. Or a ketogenic diet, which now, is well known for weight loss, a keto diet.
[00:09:19] Jennifer Simmons: Brands of items now, and I when we tried it, nobody really knew what it was. So about 13 years ago, we decided to start cutting out sugar and start ramping up protein and fat in order to calm the brain. And we were willing to try anything. And I thought yeah, I'll stop giving him these drugs and give him food.
[00:09:40] Jennifer Simmons: That's a great, plan. I said, I can do that. I'm happy to try that because at that point we just, I didn't want to hear another drug name. I didn't want to, cause it, it takes time to, it takes weeks to come off. It takes weeks to ramp up the dose. And with a body that little, it just, it affects them so quickly.
[00:09:58] Jennifer Simmons: And it was awful to watch.[00:10:00] Some of the side effects were really scary. And unfortunate. So anyway, we did we started with the Atkins diet just to get his body into mode of eating that way. And we did that for about eight months and we saw about a 50 percent decrease in seizures.
[00:10:16] Jennifer Simmons: So instead of maybe 30 a day, he'd have 15. Wow. So we were definitely happy that he was improving, but we didn't want to stop till it was zero. Yeah. There's... still 15 seizures a day is obviously way, way too many. One a day is too many. So we, we kept with the diet and then we got a second opinion from another doctor at Johns Hopkins and he confirmed that he thought because it was working so well, the Atkins diet at 50%, that if we went to the medical keto diet, He thinks that it would take away that last 50%.
[00:10:51] Jennifer Simmons: So we didn't want to do it to poor Will at the time. He was five by now and food was one of the only safe things he could [00:11:00] enjoy. We weren't able to swim, going to the park was tough, playing sports was tough, even going to friends houses. I never wanted to put any of that stress on another family or parents.
[00:11:11] Jennifer Simmons: So we were hunkered down and not really doing a ton of activity. Walking down the stairs at our house was dangerous for him because he was having so many seizures a day. So we just needed to keep him safe. And our eyes on him at all times. He struggled with heat. So outside in the summer was tough and that was another side effect of one of the medications.
[00:11:31] Jennifer Simmons: So we, we had a tough time for a while. With that and we just, food was the one thing we could reward him with and he didn't have a limit to. So to take it away from him, we really didn't want to do. And then he came down with an illness. And he was vomiting and he had a very high fever, ended up in the hospital with seizures and seizures.
[00:11:52] Jennifer Simmons: But because of the GI illness, he didn't eat for three days. And on the fourth day, I [00:12:00] noticed that he had seemed very bright eyed, even though he was sick with GI discharge, but he had no seizures. So the doctor confirmed that because he had no food for the four days, he was in ketosis, which is the whole point of the keto diet is to get into ketosis.
[00:12:20] Jennifer Simmons: So he got into ketosis and his seizures stopped. Wow. So we were forced into the keto diet by his illness and it ended up being a complete miracle. Okay, I'm,
[00:12:35] Dori Durbin: I'm familiar with the keto diet that is on all of the advertisements. What's the difference between that and the medical keto diet?
[00:12:42] Jennifer Simmons: Okay. So the medical keto diet for seizure control is not only just all the protein and fat, but it has to be measured to the gram.
[00:12:51] Jennifer Simmons: And in entirety, so each meal has to be planned out and measured to a ratio of protein and fat to [00:13:00] carbohydrates. And when the body intakes the exact to the gram measure, I had to weigh and measure and cut and, prepare each meal specifically for the exact amount of calories and the exact amount of fat, protein and carbohydrates.
[00:13:17] Jennifer Simmons: And he had to eat it entirely. So if he dropped something on the floor as a five year old, he had, I had to get it in a system. He couldn't be like, I'm full or I want more. It was exactly the meal that you prepare. with the exact amount of calories every day. And once the brain gets used to it, there's no surprises.
[00:13:40] Jennifer Simmons: It knows what it's accepting every day. And it uses that for fuel. And it was a miracle. It calmed his brain. And from that day forward, he was seizure free on the ketogenic diet for two years.
[00:13:53] Dori Durbin: Wow. Okay. So you were like, literally if he dropped like a Let's say a pea or something. You're grabbing the pea and saying, [00:14:00] you need to eat this.
[00:14:01] Jennifer Simmons: Yes. Yeah. Wow. So anywhere we went for two years, he was not able to touch or eat or have one thing of anything anybody had anywhere. So a birthday party, Christmas at my parents house, even school, if they said it's a hot day, we're going to have watermelon at recess. No, nothing, not a sip, not a, not a juice box, not a grape, not a banana, nothing measured and weighed and.
[00:14:28] Jennifer Simmons: Every day. So I became, a part time chef as well, because I was thinking, and that was hard, on him, because I was cooking normal dinners and food for his brother, and then he would get this plate of butter and cream and meat, and he'd be allowed, one grape. It was definitely super strict, but it works and it's been proven to work and now other patients are going on the diet and having success with it and having seizure control.
[00:14:58] Jennifer Simmons: So did it
[00:14:59] Dori Durbin: totally [00:15:00] stop the
[00:15:00] Jennifer Simmons: seizures completely then? It completely did. From that day, we were in the hospital. We got discharged with directions on what to make him for his next meal at home. And I went to the store and bought all the ingredients and cooked like that for him. After 6 months of seizure freedom, we weaned off all the medication, which was glorious.
[00:15:17] Jennifer Simmons: And then he stays seizure free for a full year off medication. Then he came off the diet after two years. It's not the healthiest for a five year old. His cholesterol was through the roof. And he, he is a growing boy. So he did need fruits and vegetables. And those were things that weren't really allowed on the diet very much.
[00:15:40] Jennifer Simmons: So anyway, we came off the diet after two years. And he stayed seizure free for about a year off the diet. And then, unfortunately, they came back. That's. With his disorder deuce syndrome that can happen towards adolescence. The makeup changes of your brain and you start puberty and hormones.
[00:15:58] Jennifer Simmons: And so unfortunately the seizures came [00:16:00] back and that was devastating. We did try to go back on the diet again and the brain was like, you tricked me once. I'm not going to fall for this again. So we did end up back on medication for a couple of years through puberty. And then he stayed seizure free and he just came off last year from all meds and all diets.
[00:16:20] Jennifer Simmons: And he is now healthy, seizure free, diet free, medication free, and in
[00:16:27] Dori Durbin: college. That's amazing. And you said he, so does he pay attention to his diet even though he's not officially on one?
[00:16:36] Jennifer Simmons: So this, yeah, I mean everything, made its mark, on him and he has taken it forward in life in such a good way, which I'm happy about because No, he had a rough relationship with food as a toddler and as an adolescent with a diet.
[00:16:53] Jennifer Simmons: And you never know which way that's going to go. Now he loves to eat healthy. He loves to work out he's [00:17:00] very into lifting and he said, it's so great to have a body that feels well when you feel it well and when you keep it healthy. So he stays hydrated, he stays healthy, he he really has a great understanding of health and he loves to cook.
[00:17:15] Jennifer Simmons: And I think it's a nice silver lining of the whole situation on how he really grew up on all these medications and diets.
[00:17:24] Dori Durbin: Yeah, you know that we were speaking about this earlier too. At least with the seizures, he didn't always know that he was having the seizures, which is probably a double blade because there were probably times that you were like, okay, the reason you had the seizure was because you didn't eat X, Y, Z, or because you didn't take X, Y, Z.
[00:17:45] Dori Durbin: And so there's probably a lot of factors that were a struggle as a mom to try to enforce or to encourage. Did you find
[00:17:52] Jennifer Simmons: that quite a bit? I did. I did. And I think what made it even more difficult was, at that age, they're trying new things and they [00:18:00] want to try new things. And as a mom to be like, no, you can't have that vegetable.
[00:18:04] Jennifer Simmons: Yeah, it felt so wrong. It just, it felt wrong. And then also feeding his younger brother. It was just a constant struggle. Just the guilt of it. I, take his younger brother off to the side into the, the dining room and be like, here's some goldfish. Don't eat them in front of your brother.
[00:18:21] Jennifer Simmons: Or here's a whole banana. He can only have one slice. Like I don't want him to see you eat the whole thing. Yeah. So it was a challenge. Birthday parties, holidays, you, people don't realize how every event is really focused around food. It really just is. So we would time things accordingly.
[00:18:38] Jennifer Simmons: We'd go to the birthday party and sneak out before they brought the cake out. Or, we'd find other things to do. But it's, it was tough. Yeah.
[00:18:47] Dori Durbin: Yeah. I can't even imagine. That's what I figured. It would be hard as a mom anyway. But then you throw that in there and that's, that
[00:18:53] Jennifer Simmons: complicates things quite a bit.
[00:18:55] Jennifer Simmons: Yeah. And you would think it would be hard for him as a five year old. But I think. The [00:19:00] diet made him feel so good that he called it his magic diet. So he knew how he felt on it and it caused him not to want to cheat on it, not to cheat on it at all. I had a funny story about Halloween. This all happened.
[00:19:17] Jennifer Simmons: When he started the diet, it was around Halloween. And I thought, Oh my goodness, how is my five year old going to go trick or treating? No kidding. And not be able to have one piece of candy. So I, dwelled on it and thought about it and researched it and asked people for ideas.
[00:19:31] Jennifer Simmons: And we decided to have a little store where he can still go trick or treating and then turn in all of his candy that we would then donate for a prize. And at that point, he was very interested in Lego. So we got him a Lego set that would occupy him and that he was all excited about. He had no problems handing in his candy.
[00:19:50] Jennifer Simmons: But the funny part was he would go to somebody's store and it'd be a very nice neighbor, excited to see all the kids. And they'd say, Oh, go ahead and take two pieces. And he'd say[00:20:00] I can't, I'm on a diet. Oh, he said that to all the neighbors. So I thought, Oh my goodness. All the neighbors think.
[00:20:08] Dori Durbin: They look at you Mom, really?
[00:20:10] Dori Durbin: Why?
[00:20:10] Jennifer Simmons: He's on a diet. So he'd be like, no, thanks. I'm good. I just wanted to say hi, trick or treat, but I'm on a diet. I can't have any. No Reese's cups for me. I'm on a diet. Just
[00:20:20] Dori Durbin: the fact that he could not take candy. just speaks volumes to how much better he felt, whether he knew he had the seizures or not, you'd like actively knew he must've felt something in his body that just didn't feel right.
[00:20:35] Dori Durbin: I know. Yeah,
[00:20:36] Jennifer Simmons: we were blessed that he was so good on it. I do talk to families who struggle with kids. Going into the pantry and grabbing a fruit snack, or that'll send your ketosis into a tailspin. There are parents who, and families who really struggle with that part of it, and I feel for them, because that's one thing I didn't have to really worry about with him.
[00:20:56] Jennifer Simmons: There was no cheating on the diet. Yeah.[00:21:00]
[00:21:00] Dori Durbin: Tell me how your book came about.
[00:21:02] Jennifer Simmons: So the book was gosh, it was a passion project over 10 years. It started with the journaling and the time lining, and I had all this information. And then once we found something that worked for him Children's Hospital started.
[00:21:16] Jennifer Simmons: Offering up my information to families trying to decide what to do as far as medication or diet. So I started talking to families, they would call and we would discuss what we did and how I fed them and how I did all those, Halloween store and how you navigated through treating a child with that type of diet.
[00:21:35] Jennifer Simmons: After talking to, I don't know, dozens of families I spoke with the doctor and the medical team and they said, if you just put like a little how to guide into writing, that might be easier when families call you. So it's not reinventing the wheel with every family every time.
[00:21:51] Jennifer Simmons: And I thought, okay, that could be good. But I started writing it and I thought, I'm not a doctor. I'm not a nurse. I'm not a registered dietitian. I have a little bit of [00:22:00] history in the medical field with my major in college, but I'm not certified in anything. So I said I can't really write a how to book from a mom, really legitimately on such a, medical diagnosis.
[00:22:12] Jennifer Simmons: So then we talked about maybe just a book about us and the family and how we did it. So then I changed gears, but I'm not an English major either or a writer or an author. So I took a class and. I just started turning my notes and my journaling and my timelining and my medical every time you're in the hospital, you get discharge papers.
[00:22:39] Jennifer Simmons: So I, I filed those all in and did a timeline and started the book. That's
[00:22:44] Dori Durbin: awesome. And people are using it and
[00:22:47] Jennifer Simmons: you now. Yes. Yes. So the book, yeah, they can get an idea. And I, I. did a resource page in the back of the book with all the resources I used. And the resources I used are [00:23:00] exponentially better now.
[00:23:00] Jennifer Simmons: Obviously everything is, this was 13 years ago. The worldwide web was just a thing and there weren't apps. And now you can do a ketogenic calculator on your phone where you could type in food and it will tell you how many grams to weigh out. I was with a calculator and chicken scratch math problems.
[00:23:18] Jennifer Simmons: And the resources now are so good for families who want to try these diets and there, there's definitely help out there. I felt alone when we did this because it wasn't really standard practice. And we just needed to figure out a way to make him better.
[00:23:35] Jennifer Simmons: So we just researched it and made it up as we went and found success. So we were lucky, but families now do have more resources. So I wanted the book to let them see how we navigated it, but then provide the resources we weren't lucky enough to have that they can have in the back.
[00:23:52] Jennifer Simmons: So I do have websites and apps that you can use. You can do seizure control apps. There's now the Apple watch can detect [00:24:00] seizures. Technology has definitely helped this this disorder for sure. That's
[00:24:06] Dori Durbin: awesome. That's awesome. I know that you have your book there. And I'm just curious if you'd be willing to read us some of your book.
[00:24:14] Jennifer Simmons: Sure. I know I spoke about his first seizure, so I'll just start with chapter one. It was April 2007, a beautiful, sunny spring day, and our family was spending the glorious Saturday out in the woods. Brian's parents, Grandma and G Daddy, have a wonderful cabin that sits on 100 acres of a pristine forest about 50 miles south of Pittsburgh.
[00:24:36] Jennifer Simmons: We had gone there to enjoy the peace and quiet that nature provides. Little did I know, as we walked amongst the trees, the day would turn out to be anything but peaceful. Will, who was almost two years old at the time, loved going to the cabin. It's probably his favorite place in the world. He was so excited to get there, go directly to the pond, and feed the fish.
[00:24:56] Jennifer Simmons: Will hopped on the quad with his daddy, and they headed straight for the water. [00:25:00] I followed down the path to the water with Grandma and G Daddy. And what happened next is forever seared in my memory. After 30 minutes exploring the pond area, Will just dropped to the ground like a ragdoll. At first, I thought he might have fainted, but after looking closer, I realized that just wasn't the case.
[00:25:17] Jennifer Simmons: His body was lax, like a limp, wet noodle. My heart pounded in my chest as I ran over to see what had happened. The moment Brian picked Will up off the ground, his eyes rolled back in his head and he began to drool. He was unresponsive, and we were terrified. We were in the middle of the woods with no cell phone reception and no clue what was happening to our son.
[00:25:39] Jennifer Simmons: Brian held tightly onto Will and zoomed up the hill on the quad. They were headed back to the cabin as I desperately tried to reach 911. I wanted to scream at the lack of cell service. There couldn't be a worse possible time. Instead, I began to rant, run, actually sprint as fast as possible as I followed the roaring sound of the quad engine.
[00:25:59] Jennifer Simmons: It [00:26:00] didn't help that I was three months pregnant and still feeling the pains of morning sickness. I couldn't help but think about the stress I was putting on my unborn baby, but at the same time, I was consumed with fear of losing my two year old.
[00:26:13] Dori Durbin: I can't even, that was the part that I read on Amazon and I teared up and hearing you read it is even more emotional.
[00:26:21] Dori Durbin: Oh, Jennifer, I am sure that if you're a parent out there listening who has a kid that has seizures, they're right there with you. And just that. Even that memory of that, I can tell is real strong still. If you were going to take your book and, like you're doing now, equip people with information and knowledge and give them a sense of hope, do you have any advice, like a couple pieces of advice, as to where to even start or how to even go about trying to figure out how to help their kids?
[00:26:55] Jennifer Simmons: Yes, that's a good question. And it's a tough one. I would definitely say [00:27:00] through it all, you just as a parent, you have to trust your gut. Nobody knows your child better than you. And although medical professionals definitely have more knowledge you, what your child is feeling. And you know how differently they're acting or symptoms or signs.
[00:27:19] Jennifer Simmons: Don't ignore those and don't be made to feel like they're not true or warranted. You have to be your own advocate. And you definitely have to be your child's advocate because, nobody else will. And it's very easy to just be put on meds. And that's usually everybody's first go to Everybody wants a quick fix and a easy fix and a, this is what happened and here's how we're going to fix it.
[00:27:46] Jennifer Simmons: But the reality is that's just not, that's just not how it always works. And unfortunately with epilepsy and seizures it's a science and the science is not really figured out at this point in time. It's a [00:28:00] lot of guessing and testing and trying, and it's, it can take a toll. It can take a toll on the whole family.
[00:28:07] Jennifer Simmons: Really? Yeah. So I would say just, having faith and sticking in there and hanging on to what you feel is right. It's hard because you have people who are professionals, telling you advice one way or another, or just keep upping the meds, keep upping the meds.
[00:28:26] Jennifer Simmons: And we finally got to the point where we're like, I knew in my heart, like the meds were not working. Yeah. The meds were actually making him worse and I could watch it happen every day. And I wanted to have faith in them. I really did. I wanted those meds to work so badly and I just, I knew they weren't.
[00:28:45] Jennifer Simmons: So it came to a point where we said, we're not doing this anymore. And I don't think parents realize they have that, that right to, take it. Into their own hands. It's scary. I'm not a medical professional [00:29:00] and, my husband isn't either. And, when you take something like that into your own hands, you have to be really sure.
[00:29:07] Jennifer Simmons: And you just have to have faith and just keep going. You can't give up.
[00:29:12] Dori Durbin: I think that's amazing advice. And I think it's good to hear you say. That it was a struggle, but also that you've gotten to this point, that you have this son that went through all of these experiences that weren't positive.
[00:29:27] Dori Durbin: You had success than you didn't that whole roller coaster, but now he's actually cooking for himself. He's doing all these things that are. Beyond even just saying he's normal right now, like it's like he's taking the next step to just even procuring healthiness for himself. And again, that's just, that's huge.
[00:29:48] Dori Durbin: So I think knowing that for other parents, knowing that there's that silver lining behind all of this. And
[00:29:55] Jennifer Simmons: yeah, and just to have hope. That's all people need. Yeah. You just need help. [00:30:00] Yeah.
[00:30:00] Dori Durbin: Oh, that's awesome. This is a tough one. This was so good though. And I haven't cried, but I want to. So let me ask you this.
[00:30:10] Dori Durbin: Your book, where can people
[00:30:11] Jennifer Simmons: find it? Sure. Yes, the book is called A Mom's Will because that's his name. I said we named him perfectly without even knowing what he was going to go through. So his name is actually just Will as well. It's not William. We did name him perfectly without even knowing.
[00:30:26] Jennifer Simmons: So it is available on Amazon and it is also available on barnesandnoble. com. And we also have a Facebook page and it's simply just called a mom's well. People write to me on that page, tell me about their experiences, or maybe even have questions about recipes or different types of things that we tried.
[00:30:48] Jennifer Simmons: So I am open and available to help. I've made contact with a bunch of families who are going through. similar thing that we did and working between diets and medications and [00:31:00] I'm happy to offer any advice. Like I said, I'm not a medical professional, but I am a mom and sometimes we know best.
[00:31:08] Dori Durbin: And having somebody who has weathered through it.
[00:31:11] Dori Durbin: Not only the process, but the emotions behind the process and knows what the family is going through. That's such a blessing for other people. So first, let me say, thank you for being willing to do that and to go through that with other people. And secondly, to be willing to write your story and to share it
[00:31:29] Jennifer Simmons: with the world.
[00:31:31] Jennifer Simmons: Yes, we it was a long time and I was ready to publish and Will heard a voicemail on the answering machine from a publisher. And he got really upset and he said, what do you mean this is going to be out there for the world? Everybody's going to know everything. And I said that's the point, honey.
[00:31:48] Jennifer Simmons: We got it. We got to help people and share our story. So they know they're not alone. And he said, I thought this was just going to the doctor's office. So I said, nobody, I'm hoping to help [00:32:00] actual families and people who are dealing with not only epilepsy, but any type of hardship, especially when it's your child medical.
[00:32:08] Jennifer Simmons: There's. So much out there right now, and so many people just need to realize they're not alone. So he said, if you wouldn't mind waiting just a little bit, I'm just starting high school and I really don't want that story out there. So he came to me last year and he said, I'm ready. I'm ready to help people and I'm not embarrassed anymore.
[00:32:27] Jennifer Simmons: It's so
[00:32:28] Dori Durbin: amazing.
[00:32:29] Jennifer Simmons: We started forward with publishing and just the timing of it all couldn't have worked out better. It came out a month after he graduated from high school and a month almost to the date of the day he left for college. And I was just so happy to be able to give people that hope. Not only is he going to college, he's going seven hours away and got an academic scholarship.
[00:32:56] Jennifer Simmons: So a child with a brain disorder who [00:33:00] fought through it and got himself healthy. And he is, he's thriving. So I was so happy to be able to report that if we had published the book when I wanted to, when it was really done, we wouldn't have had that good news to share with everybody. So the timing of it really worked out great that he's now off medication.
[00:33:18] Jennifer Simmons: He's no longer on the ketogenic diet and he is now a freshman in college. That's something to celebrate for
[00:33:26] Dori Durbin: sure. Oh, Jennifer, you have made my day and I hope you've encouraged so many people out there listening. I thank you so much for being on today.
[00:33:36] Jennifer Simmons: Oh, thanks for having me. I appreciate it.
[00:33:39] Dori Durbin: Oh, thank you.
