067- Jim Abrahams found a miracle cure to stop his son’s seizures.

Dad to Dad 67- Jim Abrahams found a miracle cure to stop his son’s seizures.

Tom Couch: He’s written and directed some of the funniest movies to come out of Hollywood.

Excerpt From His Movies: Surely it can’t be serious. I am serious. And don’t call me surely we have clearance Clarence. Roger, Roger. What’s our vector. Victor did joy and warmth of the Kentucky fried movie. So big, it had to be filmed in color. The naked gun from the files of bully squad can use

Tom Couch: That’s Jim Abrahams. And he’s our guest on this dad to dad podcast.

Jim Abrahams: So Nancy and Charlie and I. Got on a plane within another couple of weeks and flew to Baltimore or Johns Hopkins. Jim and Nancy had a son. Charlie who had a very young age was experiencing severe epileptic seizures. At the time Charlie was having at least a dozen seizures a day and a good day. It was on four antiepileptic medicines. And within two days of starting the ketogenic diet, his seizures were gone.

David Hirsch: Wow. Wow.

Tom Couch: Hear the story of this miracle cure and more as our host David Hirsch talks with special father Jim Abrahams on this dad to dad podcast.

David Hirsch: Hi, and thanks for listening to the dad to dad podcast.

Fathers mentoring fathers of filled with special needs presented by the Special Fathers Network.

Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation.

It’s a great way for dads to support dads, to find out more, go to 21stcenturydads.org.

David Hirsch: And if you’re a dad looking for help or. Offered help. We’d be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad.

Tom Couch: And now let’s listen in on the conversation between special father Jim Abrahams and David Hirsch.

David Hirsch: I’m thrilled to be talking today with my friend, Jim Abrahams of Santa Monica, California, a movie writer, director, and producer, as well as cofounder of the Charlie foundation for ketogenic therapies. Jim, thank you for taking the time to do a podcast interview for the special fathers network.

Jim Abrahams: Well, let me thank you and let me thank you for taking the time to focus on the issues you do focus on and to also incorporate.

What brings me to this interview, which is a passionate about a diet therapy for neurological disorders.

David Hirsch: Great. So you and your former wife, Nancy are the proud parents of three children, Joseph 35, Jamie 33 and Charlie 27, who suffered from severe seizures for a number of years. So let’s start with some background.

Where did you grow up? Tell me something about your family.

Jim Abrahams: Well, I grew up in Milwaukee, Wisconsin. In the mid fifties, early sixties. And it would be very difficult to find that anything about growing up back then in that era, in that part of the United States with anything that goes on today. I mean, I remember.

Before we even had a TV when we got our first TV, I remember my parents saying, go outside and play and be home for dinner. And, you know, there was no social media. We kind of listen to records of show tunes and things like that. Virtually any way you conceptualize life today versus it was different. It was simpler.

Things were black and white. Literally, even in TV, back then or black and white and figuratively, they were too. Father always knew best. You know, the FBI was always the good guy. Nice. And looking back, my recollection is a very simplistic. Yeah.

David Hirsch: Great. So did you have siblings growing up?

Jim Abrahams: I have two sisters and older and a younger sister.

We were two years apart. When I reflect on my life today, I count myself among the very fortunate, because we always got along. I know so many contemporaries today who are estranged from their siblings for one reason or another. But Alison Jane and I have always been good friends throughout life and we certainly enjoyed growing up together in Milwaukee.

David Hirsch: So are they still back in Wisconsin or where are they?

Jim Abrahams: Yeah, uh, Jane is still in Milwaukee and Alice’s in Chicago.

David Hirsch: Okay, wonderful. So, uh, out of curiosity, uh, what did your dad do for a living?

Jim Abrahams: My dad was an attorney firm. I tell the story when he was going. As a little boy, he would take me to his office now.

And again, because I think he wanted me to get into law, either law or medicine. And, and I remember being a little boy and going to his office and saying all those rows of books and knowing from that moment and it the same for me, I can’t read all that stuff.

David Hirsch: So, um, I’m curious to know, uh, how would you describe your relationship with your dad?

Jim Abrahams: Well, he was a quiet man. He wasn’t very. Forceful in his thoughts or trying to encourage me to think too much one way or the other, but we do the official act and we sat very quietly in a boat together. And once in a while, he would come up with a gem, not just a fit, but a gem that has stuck with me. My whole life.

He’s telling me a story about a guy who goes to work and everyday he opens his lunch bucket. There’s a peanut butter sandwich. Another day. We’ll go another day in each day, he opens his lunch. I hate peanut butter. I don’t like it. It sticks to the roof of my mouth. I just can’t stand fin peanut butter.

And then finally one day, one of his coworkers says to the guy, well, why don’t you tell your wife to make you something else for lunch? And he says, I’m not married. I live alone. And I make my own lunch. And I think about that a lot, because I think so many of. The problems that I complained about and I hear other people complain about it.

I really self-made problems if we just get that right realization over the way we can, you know, get to the real problems that, that maybe we need some outside help. Fixing.

David Hirsch: I love that story. Thanks for sharing. Um, I also remember in a previous conversation that your dad died at a very early age, age 50 or something.

Jim Abrahams: Yeah. He died 50. I was 19. I didn’t understand it then. I not sure I understand it now, but what sort of amazes me is how much, even though it was, it was 1965 when he died, how much I think about him. How much I incorporate the few things I can remember that he said, I also remember sitting in boat with him and you would say, you know, the greatest gift I will ever give you is your American citizenship.

And I think about that a lot too. And I hope that I’ve been able to pass that onto my kids. So, so

David Hirsch: out of curiosity, um, was your dad born in the U S or not

Jim Abrahams: was born in there? His, his, um, mom and dad were from Russia that he was born in the United States. He grew up in, uh, green Bay, Wisconsin. Okay.

David Hirsch: Uh, the reason I ask is that, uh, sometimes when people come from different parts of the world, uh, they relocate to the U S maybe like his parents from Russia.

Yeah. There’s a different appreciation, right? There’s nothing taken for granted about what we have here in the U S and the reason I asked to touch is really close to home. My grandfather, my dad’s dad. Um, immigrated, uh, along with my dad and his wife, my grandmother, um, and September, yeah, 1938 to the U S from Germany.

And, you know, there was this monster Exodus of Jews, um, from Europe scattered to the world, right? South America, North America, and someone to Israel, naturally, some ended up in Africa for that matter. And, uh, You know, their perspective was very heavy emphasis on education, right? Can take away everything else, but you can’t take away my education.

And they had a very staunch appreciation for being Americans like your dad. I think that was making reference to, and that, uh, example that you shared.

Jim Abrahams: And, and I think I hope in my life that I inherited some of his passion and that my kids. We’ll have some sense of it too. They grow pretty well and all that, but I hope that there is that, that feeling about being American doesn’t wane over the generations.

David Hirsch: So I think you also shared a touching story with me in a previous conversation about your dad’s funeral.

Jim Abrahams: Yeah, well, yes I did because as I mentioned, you know, he, he was a pretty quiet guy and he never. He kind of let me live my life and make my mistakes. And there were many and never beat me up too bad about it.

And then when he died again, I was like a 19 year old kid and we were sitting at the funeral and the rabbi was delivering a eulogy. And he started to rattle off all the stuff that my dad had been involved in during his life. The way is he gave back to his community the way he, they gave back to his synagogue.

That was a big deal for him, for my dad. And he had devoted many hours to giving back. And I didn’t know about that. And I thought, wow, what a wonderful way this was for him to teach me that lesson? What he never bragged about it. He never shoved it down my throat, that when he died, I found out about it at his funeral.

And I, again, I tried to take that same. Point of view with raising my own kids where I’m going to try it live a certain life and I’ll live it as best I can. And if you guys observe it and want to emulate it, yeah, that would be great. And if you don’t, I’m not going to shove it down your throat and you know, the jury is still out so far.

I think our three kids are pretty wonderful.

David Hirsch: That’s fabulous. Well, the way I think about it is that, uh, we learn from role models in our lives and in an ideal world or perfect world, you would emulate the good role models and live vicariously through the bad role models and not make some of the same mistakes.

We don’t live in a perfect,

Jim Abrahams: and I do always say to my kids too, you’re allowed to look at the way. Nancy and I Nancy their mom and I raised you in pick and choose. You don’t have to that. There was something that was a turn off to you that you didn’t like, you, you shouldn’t feel obligated to mimic that when you have a family.

David Hirsch: Good advice. Was there any other key takeaways when you think about your dad and the role model that he was?

Jim Abrahams: Well, yeah, he had one other piece of wisdom that I’ve taken with me my whole life. And he used to say, You never get nothing for nothing. I think the reason that stuck in my mind is because she wasn’t educated guy and he wouldn’t say things grammatically incorrect, unless there was a reason and I never pursued it very much with him.

And then as I mentioned, he passed away, but I spent lots of the. Subsequent years thinking about what does he mean when he says you’d never get another for nothing? Was he trying to say, you have to work hard for whatever you get, the way I’ve taken, that you never get nothing from nothing means that it’s important in life.

At least for me to take a look at all the things for which I am grateful. And understand that none of the comms duty free, for instance, if I’m grateful for being an American, if I’m grateful for having a family, if I’m grateful, you know, for virtually anything, it’s important for me to figure out how I can give back for that, how I can show my gratitude other than writing a thank you now.

David Hirsch: Well, that’s fabulous. Thank you again. So you mentioned that too, your grandfathers were not very influential. Your dad’s dad died at a young age. How about your mom’s dad, your other grandfather? He

Jim Abrahams: lived until he’s 94 and he was very sweet and very loving. And I think he worked till he was 90.

David Hirsch: Oh, my. Were these grandparents of yours all back in Wisconsin,

Jim Abrahams: everybody was back in Wisconsin.

I’ll tell the story. And my mom’s parents had a son also, and he fought in world war two and he was shot down in action during world war II and he was missing. And I’m told that during that time. So this had to be like 43, 42 somewhere in there that they didn’t know whether he was alive or not. And that’s when my grandfather’s hair turned gray.

One day after you’d been missing for about three months, they got a call from the war office. The operator said, I’m calling the operator was crying. And the operator said, I’m calling to let you know, your son is alive and he’s okay. And he’s coming home. And the operator said, I’d never get to make these calls.

And she was so they all cried together and then eventually my uncle at home. So anyway,

David Hirsch: very touching. Thank you for sharing. Uh, And it’s not lost on me being from the Midwest myself, that, you know, we think of ourselves as having good roots, family roots, family values, and somehow you’re sort of the black sheep of the family.

Right. You mentioned that your sister has stayed in the Midwest and Milwaukee and Chicago and you somehow made it out to LA of all places.

Jim Abrahams: Yeah, it’s perfect. You should say black sheep actually years later, when. I moved to California and wound up at the movie business and everything. Then the accountant said, uh, you have to, you have to incorporate you.

It’s a form, a corporation for tax reasons or something. So I didn’t know what to call my corporate. And I asked my partners, David and Jerry Zucker, who I was in the movie business with. I said, you know, what should I call my corporation? And they said, well, call it the Abrams boy, eight. How come, why the Abrams boy?

And they said, because when we were kids growing up in the lodge, all the parents used to say, stay away from the Abrams boy. So there was a little black sheep thing going on.

David Hirsch: It wasn’t black sheet productions though. You didn’t call it death.

Jim Abrahams: Oh yeah, no, that was where were you when we needed you?

David Hirsch: Well, my recollection was that, uh, you went to college, uh, university of Wisconsin.

And, uh, when you graduated, what was it that you were thinking about doing, or where did your career take you?

Jim Abrahams: Well, when I graduated, my first thought was I need a car. So I looked into the, um, Want ads and found a job as an insurance adjuster, where they provided a car. So I wouldn’t have applied for that job.

And I worked for. I don’t want to drop names here, but I worked for American family insurance where you get all your family’s protection. Under one roof. I was in insurance. I suggest her for a few years, but while I was insurance adjusting, I ran in to David and Jerry Zilker, who are. Friends. And actually their dad was a partner of my dad’s one before that a business partner and David and Jerry and I started monkeying around with videotape equipment.

And back in the, this would be the late sixties and late sixties. There was. No one had access to video tape equipment. You know, now, today we’re all videoing everything, but back then nobody was. And so we started to play around with this video tape equipment and we would videotape spoofs of TV commercials, or movies that were popular at that time.

You know, anything that would. Would make us laugh and we would just get together and film these things and laugh at them. But after a while, we started showing them to other friends and family and they would, so then we decided, well, let’s open a theater at the university of Wisconsin, which we did, and we charged a dollar for the people to get in and watch our videos.

And we actually got up on stage and. And performed a little interacted with the videos and those people laugh. So then we decided wouldn’t it be cool if we could be on the tonight show? That was our goal. So in order to do that, we would have to, we packed up all our video tape equipment and the chairs from our theater and.

All our belongings and rented you hall. They had cars. I only had a motorcycle, so I drove the UAF and we drove to Los Angeles. He founded abandoned warehouse in West LA. We kind of remodeled it as best we could with like the six or $7,000 we had. And we opened our little theater and it was Los Angeles.

It’s called Kentucky fried theater. And eventually at first the audiences were so small. We had living quarters, we had living quarters in the, on the second floor of the building where the theater was. And at first the audiences were so small. The after the show, we would take them up to our living quarters and just show them around.

You know, I got off to a slow start that eventually word started to catch on that this is pretty funny theater group. And then the LA times came and we had a wonderful review. And after that, we never had an empty seat in the house. And. That’s sort of doing the show kind of led us to believe a few things, including that we didn’t want to be actors who we did kind of like being writers the way we would get material for the show is we would leave the videotape equipment on all night because that’s when the stupidest commercial, those tend to be odd and the ones that are easiest to spoof, then we get to work in the morning and see what we had gotten.

And we. Do splits of those commercials. I’ll one day we got to work and we had captured a 1957 movie melodrama called zero hour starring Dean Andrews and Sterling Hayden and Linda Darnell. And it was a story of a pilot. It was written by Arthur Haley, who did the airport movies. It was a story of a, a pilot who chases his girlfriend.

Who’s a steward assigned onto an airplane, um, because she’s ditching him and then the airplane that’s food poisoning on the airplane in the sky is forced to land the plane. And he had had a bad experience during the war and he was afraid of flying it. So we, we wrote that story. I hope I did a decent job of signing and we made a movie called airplane and that’s sort of what led to the airplane and, and opened the doors for us to have.

You know, a career in the movie business.

David Hirsch: So his airplane, the breakout movie for you guys.

Jim Abrahams: Yeah. What we had done, we wrote a movie or the name of our theater group was Kentucky fried theater. And we had done another movie called Kentucky fried movie in 77. I think it came out and, but we didn’t direct it some again, named John Landis directed it.

And we kind of, one of the things we learned from doing that first movie was that if we’re going to take the time to write a script, we have to direct it. You can go any of a number of directions with it, with the script. But we had a very firm vision of what our humor was like and how we wanted to do it.

So Kentucky fried movie came off. First, the first new we, we actually got to direct them was airplane.

David Hirsch: And was that a part of a series airplane? One airplane too. Is that what I remember?

Jim Abrahams: There was a sequel, but, but we didn’t have anything to do with the sequel we used to say, and it’s not as though the studio didn’t ask us to, but we were pretty full of ourselves and we thought, Oh gosh, we, we can.

Do one of these every year or two. And it’s not that big a deal. So when, so we’d never, I never seen it nor has dividend Jerry ever seen the secret airplane too. We used to say if, uh, If your daughter came a prostitute, would you go watch her work?

David Hirsch: That’s a little bit crude, but thank you

Jim Abrahams: for sharing. That’s a little crude. I know. But you said you have, you have an editor.

David Hirsch: Yes. Tom you’ll have to make a decision about that. Okay. Well, um, I’m sort of curious to know, um, Along the path that you just described about driving out to LA from Milwaukee, with your U hall and all your worldly, possessions, and the modest start that you had with your Kentucky fried theater.

How did you and Nancy meet along the way?

Jim Abrahams: This is like mid seventies and I had an apartment and the guys who lived downstairs from my apartment. Would give parties frequently. They were a gay couple, Michael and Michael, and they were great guys and we got to be friends, but their parties were really loud.

So I think what they did, they started inviting me to their parties. So I wouldn’t complain about how noisy they were. And Nancy was actually, I don’t know whether this term is still used, but she was. A beard for one of the Michaels, one of the, one of the Michael’s didn’t want people at his work to know he was gay.

So when he would go to company functions, she would go along as his girlfriend. So they would think Michael Nancy were boyfriend and girlfriend. So I met Nancy at one of the Michael and Michael parties. And those parties by the way, were phenomenal for me. As a straight guy, because when you walk into his parties, all the guys would be gay and I would be the only straight guy and there’d be all these women there.

Okay. Anyway, so once every three months I was like Don Juan, and, and, and that’s how I met Nancy. She was Michael’s. Date and one of those parodies.

David Hirsch: So if I can paraphrase what you said about these parties,

Jim Abrahams: there was

David Hirsch: very little competition.

Jim Abrahams: Zero, zero. I was so challenging. I thought it was so charming.

David Hirsch: Okay.

Well, thanks for sharing. That’s a good story. So, um, I’m wondering, um, if we can switch to special needs, um, before, uh, Charlie’s situation, did you have any connection? Did you and Nancy have any connection to the special needs community?

Jim Abrahams: Zero? Absolutely. None. No, we were just couldn’t have been further from him.

Didn’t know, even, I even think growing up. I might have there might’ve been some kids, one kid or two who had some signs of autism, but who knew back then even what autism was, but basically absolutely no connection to the special needs community at all.

David Hirsch: Okay. So my recollection is that a. Joseph your oldest and Jamie are pretty close in age a couple years apart.

And then there was five or six years before Charlie was born. So you’ve got two young children. And then, um, Charlie comes on the scene and I’m wondering, how did Charlie’s situation transpire?

Jim Abrahams: Well, he, he was born. Everything was fine for about his first year. And then when, right before his first birthday, We, well, I, I remembered distinctly like pushing them in the front yard and the swing and who you kind of threw an arm up in the air and twitched his head.

And it didn’t seem like that big a deal. But I said something to Nancy. Did you, have you seen something like that? And she said, yeah, I’ve seen a bunch of times. So we started taking them to doctors and in particular pediatric neurologist. And that’s how. His condition can continue to get worse is they stay prescribing drugs that didn’t work.

And then cause seizures became much bigger, more dramatic. What are known as tonic-clonic or back in those days. Grand mall. Yeah. Users in drop seizures where. Yeah. I don’t know if you’ve ever seen a drop seizures. Like if you’re plugged into the wall and somebody just unplugged from the wall and you just sit down, you go and people who have drop seizures, just go unconscious instantly.

They don’t do anything to protect their fault. They don’t put their hands out to protect the fall, just down they go. And you’ll see a lot of kids who’ve experienced drop seizures who, you know, have a lot of. Facial scars and stuff like that because they fall on their face. And he also had a . He had the full gamut of, of seizures.

And we started taking him, as I mentioned to the pediatric neurologist. And at the time, you know, my, I was a little bit of a hot item in my movie career. And so I knew we knew people. Who donated money to lots of famous hospitals. So we kind of got to cut to the head of the line, getting into the chief of pediatric neurology at the various hospitals, including UCLA children’s hospital in Las, uh, Boston children’s hospital, Seattle children’s hospital.

And they were all very much in agreement with our treatment options for Charlie, you, we could. Drag him continue to give him drugs. We could operate on his brain and then he was out of luck. So we gave him, Charlie had every antiepileptic drug at the time and various cocktail forums and he had a brain surgery and nothing stopped his seizures.

And so we were pretty much told. Now pretty much we were told we were out of luck and that he was his prognosis was continued seizures. And what they term they used back then was progressive retardation.

David Hirsch: Wow. So it was the diagnosis actually. Something to do with epilepsy or was it beyond that?

Jim Abrahams: Yes. Yeah, no, it was, it was epilepsy.

They’re various epilepsy syndromes. This was called Lennox Gusto syndrome. It might’ve been myoclonic a static epilepsy, but it fell. It was definitely an epilepsy syndrome. The definition by the way of epilepsy is having more than one season.

David Hirsch: That’s the definition.

Jim Abrahams: Yeah. That’s the definition. And he was having dozens a day.

David Hirsch: Wow. So it sounds like the treatments, the drugs, the operation rein surgery, we’re not able to get on top of this, um, seizure situation. I think people refer to it as seizure control, right? To get on top of that. One of the situations that I’m aware of is that. Pediatric neurologists. If that’s the group that’s focused on things like this, um, have different philosophies, some are, you know, quick to administer drugs and maybe come in at a heavy level, uh, to get on top of it.

So sort of eliminate the seizures, but then you’ve got a zombie, you know, for a child. Correct. And some are more reluctant to use drugs, which is to say that we’re not sure, kind of eliminate all seizures, but if we could minimize the seizures, the impact of the seizures, The child will have a better ability to learn and communicate and have a more traditional lifestyle.

And it sounds like nothing was working, right. It wasn’t a matter of

Jim Abrahams: no. Any drug, any combination of drugs in the surgery. You’re correct. And not nothing was working. And I think if you go into. Any pediatric neurologist office today, certainly back then, and with the kid who’s having seizures, they almost have to prescribe something.

What they neglected to tell Nancy and me back then, and still neglect to tell most parents who walk into a pediatric neurologist office today is that after if a first antiepileptic drug fails, There is a 13% chance a second will work and a 1% chance that a third antiepileptic drug will stop a person seizures.

Wow. Yeah. Which is a big, wow. And if only they had told us that back, then, then we would not have just sat there, you know, like. Like we did, you know, feeding Charlie one drug after another, after the first drug failed, it was a remote shot. The second one that’s going to work and against it, of course. And I’m sure we’ll get into all this with diet therapy, but the statistics with diet therapy are dramatic clinically better.

David Hirsch: So was there any advice that you got early on beyond what you’ve already mentioned? That was helpful for Charlie or you thought between you and Nancy that, Hey, we’re moving in the right

Jim Abrahams: direction. Whenever we would go see a new doctor for the first time. Nancy’s first question was never. Can we stop these seizures?

Can we get rid of these drugs? Her first question is always, can he be happy? And I think about that a lot. Because that’s ultimately what all of us that’s all, any of us want for our children. And that was still a goal. We still felt he could be happy. Eventually once we were pretty much told we were out of luck, I started doing some research on my own.

This is 93. So the internet wasn’t up and running. And so one time when we were at UCLA seeing Charlie’s pediatric neurologist there, I just stopped by the medical library at UCLA. Not so much to try to find a cure for that Charlie. Cause you know, he had had seizures in the arms of some of the world’s experts.

We thought it told us everything. Okay. So, but when I was doing some research, trying to figure out how Charlie and the rest of us were going to make it through life, I came across. The ketogenic diet. You know, if you look in any tax medical texts about pediatric epilepsy, you’ll come across a kid. Genic died in the library that day.

You know, I learned through a bunch of books that the diet had been developed at the Mayo clinic and the 1920s. It had been an early treatment option for children. To the twenties, thirties, forties, fifties, until drugs came along and incredibly the outcomes for children who were in sickest. Charlie was at about a third, had their seizures go away.

Another third were significantly improved. And for third that the diet didn’t work and. I think incredibly because why wouldn’t anybody have told us about this? So that in the library, I came across a study that had been published just the year before in 1992 in the premier epilepsy professional magazine called Epilepsia.

In which doctors from Johns Hopkins, it put kids as sick as Charlie on a ketogenic diet and 29% had their seizures go away. And another 30% were significantly improved. But again, none of the experts we had taken C mentioned anything about this. So I called the doctor from Johns Hopkins, a guy named John Freeman who ran pediatric neurology back there.

And. Um, ask if Charlie would be a good candidate for the diet. And he said, send his medical records and we did. And he said, well, yeah, why don’t you bring Charlie? So Nancy and Charlie and I. Got on a plane within another couple of weeks and flew to Baltimore where Johns Hopkins is at the time Charlie was having at least a dozen seizures a day on a good day.

He was on four antiepileptic medicines and within two days of starting the ketogenic diet to seizures. Wow. Wow. You was. Yeah, I still can’t quite graft. I can’t tell this story today, even without getting a little choked up, but that’s what happened. And long story short, Charlie was on the ketogenic diet for five years, never had another seizure.

He was off all his antiepileptic medicines within a month of starting the ketogenic diet. Today he’s a 27 year old. School teacher in West LA teaches, uh, preschool and he’s, you know, he eats whatever he wants, the diet cured him.

David Hirsch: Yeah. Well, that’s amazing. And I’m just trying to put myself. In your shoes, when you realized that this was the key to unlock the problems that he was having with the seizures.

Jim Abrahams: Right? Right.

David Hirsch: No doubt. You’re thrilled, right. To have a solution. And you’re hopeful,

Jim Abrahams: prayerful, right.

David Hirsch: That, you know, it’s not just a blip, right.

That it’s the longterm solution.

Jim Abrahams: It takes a while to trust it.

David Hirsch: Yeah. And then you’ve gotta be angry, or I don’t know if it’s anger, but mad that her, all the experts that you’ve come in contact with over the year or whatever period of time it was where. Not thinking more broadly. I don’t, it doesn’t even sound like it’s thinking outside the box.

Right? If this is being published in magazines that are being broadcast nationally, internationally to those that are impacted by epilepsy, you’re wondering, well, why is it that doctors then maybe even today, Don’t embrace the ketogenic therapy.

Jim Abrahams: Yeah, you’re right. I mean, part of I’d like to think, thinking back to then part of my reaction was what my dad, I think I did teach me about, you never get nothing for nothing and to give something back, but a lot of it was anger that came from.

Realizing that everything that Charlie had been through is unnecessary and everything that his siblings and his mom and I have been through had were unnecessary. If somebody had just said, why don’t you try changing what he eats? So then when the dust settled a little bit more. And we took a look around and you realize there’s a world epilepsy population of 60 million people.

David Hirsch: One, six,

Jim Abrahams: 16 million was six, zero

David Hirsch: million. Wow. 60 million.

Jim Abrahams: Okay. Yeah. And most of those people start having their seizures as children. So they’re tens of millions of people who could be helped by a ketogenic diet and still it’s. Like this little, little secret. So we started the Charlie foundation just to let people know who we’re in, in our shoes.

You know, there’s this alternative to drugs and surgery. And if you, you can inform yourself and then make a joint decision in conjunction with your healthcare provider. Um, whether this is something you want to try. If it’s, if it’s worth it. For you to try and going back all those years ago, I remember thinking, well, I’ll be doing this for about a year.

And then of course it will catch on because obvious, what do you want to do? What do you want to do? You know, do you want to drug your kid? Do you wanna cut his brain or do you want to change what he eats? It just seems so is to me, but progress has been, there has been steady progress and it has been accepted.

Far more than it was back there, but still only a tiny fraction of people who could benefit from the diet, get accurate information about it. And so I’ve in recent years become more. Obsessed about what are the forces other than good health care that keep this information away from the patients. In other words, what is the influence of the drug company on our health care?

What is the influence of our medical device company on our healthcare? The ketogenic diet, it’s a high fat diet. So you think the cardiology community is going to argue in favor of a iPad diet and the ketogenic diet. It’s also very low in sugar has been prohibits sugar. So do you suppose the sugar industry that adds sugar to virtually all our processed food, it’s going to encourage doctors to advocate for a ketogenic diet and then finally.

And this is really sort of the chronograph. And I’ve been doing this for a long time. Look at me. Um, what’s the biggest light bulb in recent years for me is the understanding. The doctors, medical doctors are not taught nutrition or diet therapy during their training. They’re simply not denying, encourage anybody who hears this.

Anybody. Next time you see a physician ask him or her how much time during your formal medical training, did you spend learning about nutrition or diet therapy and their answer will be virtually none. So that’s a big problem. If you, if you don’t know about a good diet, if you don’t know even about nutrition in the day where, you know, type two diabetes is all over and, uh, obesity is epidemic knowledge.

If you’re not taught that stuff, then how can you tell your patients about it? Yeah. Well,

David Hirsch: thank you for sharing. That’s a very insightful, um, so just to recap, the ketogenic therapy or diet is high fat, low sugar, and those are the, some of the stumbling blocks or obstacles because, you know, we’re, we’re, we’re encouraged to eat low fat food.

Um, and I think generally speaking people or encouraged to avoid sugar, particularly if you’re diabetic or predisposed the diabetes. Um, but I think, you know, you hit the nail on the head, which is doctors practice, what they’re taught. Um, and if they’re not taught nutrition or diet therapy, why would you expect them to be espousing that?

Uh, but just from a practical standpoint or taking a step back. You would think logically and logic sometimes doesn’t apply that you would have as a checklist. Let’s try the diet therapy. If that doesn’t work right, then let’s go to medication. And if that doesn’t work, um, like surgery would be not a last resort, but that’s pretty invasive, right?

There’s more risks associated with surgery than. You know, drugs, and it just seems like just the opposite. Oh, here here’s the quick solution. Try these drugs. Um, if that doesn’t work, we could do surgery. And then, you know, if all else fails, I guess you could try adjusting somebody who’s diet. It just seems like it’s just backwards.

But again, that’s logical.

Jim Abrahams: Yeah, you’re right. And you’re clearly preaching to the converted and, and I think. It says it shouldn’t my feeling is that it, it’s not a unilateral decision that it shouldn’t. We go to our physicians for their input and all that, but it’s an paradigm that we inform ourselves too.

So we can make an informed form joint decision with the physician. Physician might easily say, well, Harry, you take this pill a couple of times a day and go out and eat whatever you want and do whatever you want and stuff. And so it might sound simpler to them. Um, but if you’ve helped your kid for, uh, a few hundred or a few thousand seizures, you know, that, that pill and that pill isn’t work and that’s not simple at all.

That’s so I genuinely feel we have a goal of a level of need informed joint decision making so that a family, and it could be that for some families, you know, they can’t eat. The diet is restrictive. And I should mention, because we did mention. No sugar and reduce be fine carbohydrates and high fat that you are allowed a fair amount of protein and vegetables in, in with the diet.

So it’s not like some outrageous concoction, but, and in recent years, The menus have been, you can see on our website that you can, there are lots of delicious recipes that are available, but to me, part of the problem, it was never, nobody ever said, okay, just laid out the scenario you’re talking about.

Okay, here is drugs. Here are the chances. Here’s the surgery for this particular disorder that your kid has in. Here’s the diet. Now let’s discuss all three and be objective and come up. With a solution. Certainly if we’d been offered that alternative and thousands and thousands of families that we talk to, they would have jumped at the chance of dying long before years, because the other thing is.

You know, years of seizures take a toll on a brain and the sooner you can intervene with the correct therapy, the better.

David Hirsch: Yeah. Well thank you for sharing. So the Charlie foundation is a five Oh one C3 and you have a fabulous website with a lot of good resources for somebody who’s willing to, you know, dig in a little bit.

And I’m wondering, do you have a sense for what the success rate is when somebody pursues these ketogenic therapies? Yes. Um, it’s not a silver bullet. It’s not like, okay. You do this and you have a hundred percent results, your family experienced Charlie experienced what seems like a miracle, which he’s seizure-free can eat whatever he wants, you know, just five years after, you know, completing the diet.

So that’s, I want to say a best case scenario, but yeah, that’s the optimal outcome.

Jim Abrahams: Absolutely.

David Hirsch: And I’m wondering just to be objective. Jim you’ve had hundreds, if not thousands of families pursue this ketogenic therapy, what are the numbers look like?

Jim Abrahams: So today 50% of people who go on a ketogenic diet have a seizure reduction of at least 50%.

And for somewhere, depending on the hospital, somewhere between 15 and 24%. Have their seizures go away completely. The most recent medical published medical guidelines that were written by a international group of pediatric neurologists and dieticians and scientists suggest that the diet be strongly considered.

That’s their word strongly considered after the failure of two medications. For me, that’s an conservative, but if, if in fact people would strongly consider a ketogenic diet. After the failure of two antiepileptic medications, that would be a huge step in the right direction. Okay.

David Hirsch: Well, thanks for sharing.

So I want to go back a little bit to what you were doing from a career standpoint, because you also helped write or direct or produce. I don’t remember the movie first do no harm. And I’m wondering what’s the backstory on that. And, uh, how did that play out? Well,

Jim Abrahams: first do no harm. Charlie’s. Older brother and sister went to elementary school with Meryl Streep’s kids.

And so we were kind of family, friends, and any think. Wonderful. You might think about Meryl Streep is absolutely correct. She’s just the most down to earth. Regular mom. Uh, did, you could find that anyway, she was around when Charlie got sick and she saw him get sick and then she saw him get better and kind of.

Marveled at what had taken place. And as the Charlie foundation is, we started to get word out about it, about the ketogenic diet. We started to hear from other families who had had the same experience as Charlie. In other words, kids who were the sickest could be one way or another found the ketogenic diet and.

Well charity, just like Charlie and the most dramatic week, we got one letter from a, a woman from outside of Chicago. Who described her story. She lived on a farm with her family. Her kid got real sick and eventually she got him to the ketogenic diet too. So I contacted the family from Chicago and asked, you know, it would be okay if we try to write a screenplay and we did, then we showed it to marrow and she said, Oh yeah, I’d love to do that.

And if you, if you go to any studio in the world, And you say, listen, I’ve got Meryl Streep and she’s willing to read the phone book. They’ll they’ll finance that movie.

Two time Academy award winning actress, Meryl Streep returns to television film directed by Jim Abrams. I’ve been doing some reading and I’ve come across a treatment for epilepsy. She needed an answer. They took 58 of the sickest kids, put them on a ketogenic diet and almost a third of them had their seizures go away.

There’s absolutely no scientific evidence. This diet works. I’m just doing what I think is right. What’d you find, I think he’s coming back to us. It was a miracle.

We got that movie financed and made, and it is true story of another family. Well had the same experience of Charlie except under the, the biggest difference. The big, huge difference was that they were broke. And so they had a mortgage, their home and went through extraordinary circumstances in order to get the sun to the diet.

And, and you got him cured. And the whole idea of back then when we made that was to get the word out about the diet and to empower parents, you know, because a lot of this is about for moms and dads, it’s for trusting your instinct. And if it doesn’t feel right, what’s, you’re being told it doesn’t fit well, trust those instincts.

Certainly that’s the case with the family where Meryl played the mountain.

David Hirsch: Well, what impact did the movie have on people’s awareness and their interest in pursuing the ketogenic therapies?

Jim Abrahams: Yeah, I think that, and we were also fortunate in the Dateline NBC back in the nineties for about 10 years, did a feature about Charlie and they would come around and update it.

Every once in a while. And so I think between them first do no harm, it had a tremendous effect. The problem was there was almost like one step forward and one step backward, because if you’re going to use a ketogenic diet for a real medical purpose, like epilepsy, or today brain tumors or early onset, Alzheimer’s you need to work with a trained.

Ketogenic nutritionist. And back then, there just weren’t that many, there was the woman at Johns Hopkins and a handful of others, including one who we work with today. His name is best super Kenya. So the. Neurology departments of many hospitals, we’re kind of caught flat footed because the doctor doesn’t help administer the diet.

That physician kind of prescribes the diet and then hands everything off a dietician. Well, if you don’t have that dietician, then, then that’s a problem. And so back then, I think there was like one step forward. One step back, more people knew about it. More people who have benefited from the diet knew about it, but the medical community had to catch up by training and working with a nutritionist who knew their way around the diet.

David Hirsch: So one of the key elements, if I can paraphrase what you’ve said, Jim. Is engaging a dietician or nutritionist who would be an expert in the field and ketogenic therapies, diets are not Val therapy, but just one of many diet type therapies, depending on what the circumstances

Jim Abrahams: are. Yeah. And I think what we’re finding today, and this is such a.

Weird turn of events, but the ketogenic diet has been very popular because it’s been used for weight loss and training for marathon and stuff like that. And the ketogenic diet for a real medical condition is, is something else. And you must. Engage in it with the help of a trained specialist. If you’re just using it to drop a few pounds and you miss a day or you miss a meal or something, it’s no big deal.

But if you’re on the diet to control C or as I say, for instance, a to control a brain tumor, then you have to be very, very specific and work with somebody who knows what. She’s doing.

David Hirsch: Okay. Well, thank you for emphasizing that. So I’d like to switch gears and I’m sort of curious to know what, if any role has spirituality played in your life or your family’s life?

Jim Abrahams: Well, I think I mentioned, I know I mentioned what my dad told me about giving back how important giving back is. And I must say that I was raised Jewish. And I, it never, it never had all that much impact on me. I didn’t, I kind of went away, but as life has gone on and I have experienced what happened with Charlie and with the Charlie foundation, I really do feel that it is helped me spiritually.

And I don’t want to make it about me, but, but it kind of the silver lining that we’ve been able to put on what happened to Charlie has made me feel. And I think my whole family feel as though we’re more full as people, like there’s a purpose, there was a purpose to my life to Charlie’s having that experience.

And if that’s spiritual, you tell me, I don’t know for sure, but yeah, but it certainly made much more understandable for me.

David Hirsch: Okay, well, you didn’t use the word. Yeah. You didn’t use the word calling, but my observation is that this has become, I’m a calling. Yes. And I associate that with purpose. And what drives you and what gets you up and what keeps you going?

Yes. You know, it keeps you focused.

Jim Abrahams: Absolutely.

David Hirsch: It’s a passion, right? It’s really obvious to me that this is a passion of yours and your family is to help people be more intentional and take responsibility for their own situation and not be subject to the winds. Right. You know, the medical community is blowing this way or that way.

And, uh, you know, uh, it’s like education, right. Parents are responsible for their kids’ education. It’s not the teacher’s responsibility, even though they go to school to learn. Right. But the parents have to take responsibility if their child on schedule, right. They’re meeting their milestones. You know, probably not a lot of engaging soon as necessary, but if they get behind for whatever reason, It’s not the teacher’s responsibility, it’s the parent’s responsibility to make sure that they get tutoring or other assistance to make sure that they’re they’re progressing.

And I think you can apply that same philosophy to health. It’s not the doctor’s responsibility for your child’s health. It’s our responsibility. As parents, the doctors are there to help us, right. Hopefully guide us, but at the bottom, at the. Base it’s our responsibility as parents to be our child’s best advocates.

And that’s what I heard you say.

Jim Abrahams: And, and, and that can be daunting too. I mean, it’s much easier to think, Oh, I’m going to walk into this guy’s office and he’s going to take charge and he’s going to do all the right things and everybody’s going to live happily ever after. But that doesn’t always happen.

And that’s why you got to, you know, part of the learning curve is exactly what you’re saying is taking charge of our medical destinies in the medical destinies of our children. I should also have the other thing that keeps my fires burning is that I. When people call the Charlie foundation, I talked to them and so the hardly a day goes by when I don’t hear another story.

Very similar to this morning, I was talking to a man, a 58 year old man. Who’s been having seizures since he was 17. He’s had two brain operations. You could tell he was slurring from the anti-epileptic medicines. He was on and two and the day before, for the first time he had heard about a key to giant.

Yeah. I mean, his life has been ruined. And, and we hear these stories every single day and my, when I, it breaks my heart and it makes me mad.

David Hirsch: Wow. Well, thank you again for sharing. I’m thinking under the banner of advice, if there’s any advice you can share with dads or parents for that matter, helping raise a child with.

Uh, special needs. You obviously have some experience in the area of seizure control related to epilepsy specifically, but I’m wondering if there’s any specific or broader advice that you might be able to offer.

Jim Abrahams: Well, you know, w you and I chatted. Uh, a few days ago, and I’ve been thinking about our chat quite a bit.

And I do believe, especially with the dad thing that, and the other thing I was to say real quickly is I’m a grandpa now. And I was with my granddaughter at the park every day. She’s just going to turn to, and I was watching the way she played and I was watching the way the boys. At the power play and she’s, she’s not a girly girly, but she’s, she’s kind of sweet and stuff like that.

And these guys were running around the park. Oh, you I’ll just I’ll do it faster. I’ll do it stronger. Even, you know, they started going bang, bang with good. Like nobody taught them that just, and my point is the boys come out different than girls. And it’s helped me to understand that. And it was years.

Into it that I figured in Nancy taught me this too, to be honest is when you start the sentence with, I feel a lot more good will come in from it. It took, I never used to do that, but when you, as a guy, when you start with, I feel okay, well that means you’re getting in touch with your feelings. You’re not.

You know, usually when I get together, like tonight, I’m going to get together with my guy friends, and we’re going to watch the opening game in green Bay Packers season together. And we’ll talk,

David Hirsch: you’re not a green Bay Packers fan. I am.

Jim Abrahams: Oh, well you can get it.

David Hirsch: I’m just teasing you. I know you’re a Packers fan.

That’s green hat of yours is giving it away.

Jim Abrahams: But what will happen is, you know, the guy is, and. We’ll sit around and we’ll talk touchdowns and first downs, statistics and stuff that nobody’s gonna start a sentence with, I feel. And, and when you have a kid who’s in your guy in particular, and I, I shouldn’t say maybe not in particular, but if you’re a guy, I think.

Feelings just come instinctively more to women and to moms than they do to guys and dads. And I think it’s important for us to be able to, in order to negotiate the world of a kid. Who’s has a disability or a sick or something to be able to start sentences with that I feel. And so you can deal with those feelings and help manage that world.

That guys aren’t particularly good at managing.

David Hirsch: Yeah. Well, I think that’s great advice. So if I can paraphrase what you’ve said, you know, be more expressive and don’t be afraid to share your feelings.

Jim Abrahams: Absolutely.

David Hirsch: Right. It might not come up naturally because that’s just how we were brought up or what society’s expectations are of men.

But, you know, I think that it’s a healthy thing to do. And as much with young boys as with young girls, yes. Not just for grandpas like herself or dads that are raising girls, but, uh, to, um, be a good role model for your sons and. Not that they need to wear their emotions on their sleeves, but, uh, you know, we are influencing our kids and I think it starts with just setting a good example.

So I’m sort of curious now, why have you agreed to be a mentor father as part of the special father’s network?

Jim Abrahams: Well, I think that it’s a, it can be pretty lonely out there and we all need. Support and we know, you know, I’ve walked in your shoes. I know how you feel. And that’s a big deal in, in the work that I do.

So if I talk to somebody who, who has a kid with epilepsy or something, they know. And they know I’m not, I’m not in it. You know, we don’t gain in any other way, other than this spreading knowledge, then I think that’s a big step, you know, unless you walk in my shoes, it’s hard to know how you feel, unless I’ve walked in your shoes.

It’s hard to know how you feel. And once people understand that you’ve walked in their shoes, I think there’s a degree of trust and comfort that comes.

David Hirsch: Yeah, well, we’re thrilled to have you. Thank you for being involved with the Special Fathers Network. Let’s give a special shout out to dr. Rita. I consign a pediatric neuro psychologist who profiled you and the Charlie foundation in her book?

Jim Abrahams: Uh, not what I expected. Yeah, I’d think I just met her to say hello years ago. At Nancy’s and she, uh, and share a very close friend and I’m going to see her in a couple of weeks. We’re going to be at a wedding. So I can’t wait to talk to her. I’ve read her book now. And it’s great. So I’m excited to hear.

Yeah, absolutely. Okay.

David Hirsch: It’s really a good book. I can’t say enough about it myself. Um, it was so inspiring if you have a child with special needs, not what I expected by dr. Rita, I can Stein and, uh, um, most of what she was talking about, if you remember was what not to do, right? Some of the mistakes that people make and.

You know, you can learn vicariously and yours was this like shining example, this beacon, if you will, of a family that, you know, did it the right way. And what she emphasized was what you were emphasizing is that, you know, not going to go off on your own and do something, but working with a nutritionist, working with a dietician, correct.

Because this is a serious medical condition and you don’t want to be fumbling around with something. You want to get it right. And you’re just role models. For those who had this intuition and were willing to pursue that. And, you know, you have these phenomenal results, which no doubt everybody wants to emulate, but you know, it’s not a guarantee, I guess.

I just wanna emphasize that, um, you did emphasize that with 15 or 20% or whatever it is, You know, there’s noticeable difference, documented differences and the reduction of seizures. So, you know, it’s just, uh, something that everybody needs to educate themselves about. If they. Have a child or grandchild or a loved one or friends, right.

We’re colleagues for that matter that you know enough about, you could just say, Oh, by the way, I heard this podcast, or there was this research that’s done, or there’s this foundation that you might make yourself aware of and you don’t want to ever look back and say coulda, woulda, shoulda. So is there anything else you’d like to say before we wrap up?

Jim Abrahams: It’s I think it’s also worthwhile dimension. That even if the diet isn’t a complete cure, but if you’re among the 50% who has at least a 50% seizure reduction along with that can come reduction of meds of antiepileptic medicines, all of which come with debilitating side effects.

David Hirsch: Yeah. Well, thank you for emphasizing that.

If somebody wants to get information on the Charlie foundation or to contact you. How would they go about doing that?

Jim Abrahams: Uh, Charlie foundation.org, charliefoundation.org. And our phone is (310) 393-2347. Okay.

David Hirsch: So that’s (310) 393-2347. And if somebody calls. Somebody is going to answer the phone or get a call back.

Jim Abrahams: We just can’t answer or we’ll get, if there’s an issue, we will get back to you that day.

David Hirsch: Okay, well, Jim, thank you for taking the time in many insights. As a reminder, Jim is just one of the dads who agreed to be a mentor father as part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs.

If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation to your own. Please go to 21stcenturydads.org. They’re a host of ways to support the Special Fathers Network. You can post a review on iTunes, share the podcasts with friends and family, as well as making a charitable donation to the 21st Century Dads Foundation.

Jim, thanks again.

Jim Abrahams: Thank you very much.

Tom Couch: And thank you for listening to the dad to dad podcast presented by the Special Fathers Network. The special fathers network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process. New fathers with special needs children connect with mentor fathers in a similar situation.

It’s a great way for fathers to support fathers go to 21stcenturydads.org. That’s 21stcenturydads.org.

David Hirsch: And if you’re a dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad.

Jim Abrahams: If you enjoyed this podcast, please be sure to like us on Facebook and subscribe on iTunes or wherever you listen.

The dad to dad podcast is produced by Couch Audio for the Special Fathers Network. Thanks for listening.