¶ Welcome and disclaimer
Welcome to Think Like a Pancreas, the podcast where our goal is to keep you informed, inspired, and a little entertained on all things diabetes. The information contained in this program is based on the experience and opinions of the Integrated Diabetes Services clinical team. Please discuss any changes to your treatment plan with your personal healthcare provider before implementing. Welcome to Think Like a Pancreas, the podcast. I'm your host, Gary Scheiner.
I am owner and clinical director of Integrated Diabetes Services, and today's session is a celebration of Dads with diabetes and dads of kids with diabetes, and I'm very excited to be joined by an old friend and colleague, Tom Karlya. Tom is Vice President of the Diabetes Research Institute. He's a former producer for D-Life and a longtime volunteer
¶ Meet Tom Karlya: Diabetes Dad
with Children With Diabetes. But most importantly, he is a diabetes dad. His kids, Kaitlyn and Rob, both have type one diabetes. So, Tom, I only hit the highlights. Why don't you tell us a little bit more about yourself?
First of all, thank you for having me. Seeing you and Barb out there. It, it's like a, uh, the dream team of people who I've met over the years just because of your vast experience and the amount of different ways you look to constantly trying to help all of us in the diabetes community. So I am very grateful, grateful, and honored to be here. I don't know what else you need to know. I guess we'll go through it in our conversation. It'll come out. And what's the year?
All the things I've been involved with. I just, my kids. I started out this world to be an actor. That's all I ever wanted to do. I was working in New York City on a show. On September 26th, 1992, when my wife beeped me.
Let's just cut it off there. Your wife beat you?
Beep, beep.
There is
beep.
More to it.
Beep beep.
Beeped beep. Beeped you. Gotcha.
Um, and, and had a nine one one to call home. Pulled to the side to a phone booth. Those of you who don't know what a beeper is, probably doesn't know what a phone booth is, so I'll explain. I called in and she said, Tom, you gotta get home. We're rushing Kaitlyn to the hospital. They think she has type one diabetes. Talk more about that in a little while, but that changed my life. When I got to the hospital where I lived on Long, long Island at the time.
I lived, uh, three quarters of the way to the Hamptons. I lived in a place called Medford and, uh, don't live there now. We moved to South Carolina about 10 years ago and, uh, we, we were entrenched in the, in the, uh, long Island community. And at the time we didn't know what this--whoever knows what diabetes is. So we found out. We just threw ourselves, immersed ourselves in as much education as we could find out.
I made a promise to my daughter that we would do everything that we could to find a cure for this disease and to find ways to help people who have to live with it. And she was two at the time, so I'm sure I was talking to myself. But it changed our lives. Uh, I became an advocate. My first job in the diabetes world was for an organization called JDF. Now, of course, has got, uh, gone through a couple of different name changes,
iterations.
And, and certainly they,
we won't, we won't even comment on the newest name. I don't want to get into the heated discussion about it.
You know what, for me it's the same organization with great people. They, the same great people that have been around. One of the moms who started that was a girl named Carol Lurie, and I remember when I left to go to the Diabetes Research Institute and I thought she was, you know, she was gonna really laced into me when I left, but she, she didn't. And, and a couple of weeks after I left, I got a, a, a piece of mail.
And it was from her and had, she had her own calligraphy and I opened it up and she just said, always gets to me. She said, I'll see you at the finish line. She said, I'll see you at the finish line. And so wherever I've worked, and you know, I always said, it should never be this organization or that organization. It should be this organization and that organization and that organization. And look, resources are limited. Everybody can't give, you know, to everybody all the time.
But I know that when I found the Diabetes Research Institute, which was really the only full center of its kind. I mean, it's an 87,000 square foot building. That's all they do is look for the cure for this. And they have a clinic also. I knew I had found my home and where I would spend probably right up until this day and still working there just because of, of of their belief of that a cure can be found and if they can't move it up the research ladder, they move it out.
Sure. Who, who better to be there than the man whose moniker is diabetes Dad? How did that name come about?
Actually, that happened at D-life. It was a combination of two people. I, you know what, I had this thought the other day, the late Paula Ford Martin, the world lost her, we lost, uh, an icon. She died in very young age of cancer and, and actually Kerry Sparling, the, I had to answer to Kerry. Kerry was the, the editor. And, um, she said, look, we're gonna make diabetes Dad. You're gonna, you're gonna do a blog for D Life called Diabetes Dad.
And when I left there, then I started writing, I started a column and I started diabetes dad.org. I remember going to, um, GoDaddy and uh punching in diabetesdad.org and saying, I'm sure that's taken and it wasn't. And I was like, whoa. So I, um, grabbed that and, and have been writing monthly columns since.
It's been a, it's been a joy and when I did, when I was at D Life, you know, when you, you're a television station, everybody wants to talk to you, so, so when you're in fundraising and trying to raise money, not everybody wants to talk to you.
Yeah. Why... i, I'm surprised Carrie didn't insist that you wear a plaid everywhere and drive a station wagon just to fulfill the diabetes Dad moniker.
Who, who, who? I, I never said she didn't say that.
That, that would've looked great. I could see. See you doing that.
It was, it was, uh, it was that name and I, I, I, I correct people all the time. It's a diabetes dad, not the diabetes dad 'cause we're all out there and some who are parents have kids with it. And those who are parents who live with type one. As you well know, my mantra really is just don't do nothing. Just even in your own little world, in your own little space, people say, what can I do? Well, not everybody is, you know, got a globs and globs of money that they can just give it out to people.
And not everybody has super amount of brains that can research to find a cure. In your hometown, in your little world, whatever it is, you can make an impact in your community about this disease.
So we're, we're gonna spend some time talking about being a
¶ Why should we talk about the role of dads in diabetes care?
dad to children with diabetes, and then we'll talk a little bit about being a dad who has diabetes. That'll kind of be my role. Why do you feel that? Dads deserve their own special topic and their own special, special podcast dedicated to this.
Well, I think to be, to be quite frank with you, it's why do we get our own holiday Mother's Day? There's Father's Day. There's, because I think there are situations, there are instances, there are everyday experiences that are unique to us as dads. How just in regular life, dads and moms are two different, are two different beings, and I think it's extremely important that they're very well connected and that and that the kids know. And in today's world, it's even tougher.
And talking to dads on their level, on a level that, I know what it's like to be a dad and have to put up with things that are different than when they want mom. It's a different, I think we're, we're, I'm not saying that we're not emotional, but you know, there, you know, you think of a mom, you just think of somebody with open arms to hug and kiss your boo boo kind of thing. You know, and I think dads are, are not rough about it, but they're lean.
People seem to think that they can lean on their dads and they go to their mom's for emotional. Now I'm not. Getting into, you know, where are we in today's world? And moms and dads are interchangeable in a lot of different ways. And that's not my discussion point today. My discussion point is, is that, and a lot of times today, the role of the mom and or the dad has to take on two roles because there are divided families. Now there are melted families together.
I was at a conference, this just blew my mind and I dunno if you remember this, but we were at a conference and, and there was a guy there and he said, I am. I'm divorced. I'm divorced, and I'm here because I'm still the dad to my children with Type one diabetes. He said, that doesn't change just because I'm divorced. And then the next guy spoke too, 'cause this was just the dad's group. And the guy said, I married into a family with a child with diabetes.
I said, wait, wait, wait, wait, wait, wait, wait. Are you? Is the same? Are you both the parent and the stepdad to the same child? And he said, yes. I just burst out crying because so many times when two families come together, it's a real struggle. It's a real struggle when when diabetes started, diabetes is used as another wedge and a lot of times for the conflicting of the parents.
But these parents, and I'm sure there's still things that they have to go through, but they thought it most important and both of them had their wives with them, that the child, if everybody could just focus on the child with diabetes, we're all gonna win. Everyone's gonna win.
Does it bother you that in so many families, whether it's a nuclear
¶ Unique challenges for dads of children with diabetes
family, a divorced family, the dad often plays a relatively minor role in the child's diabetes care and the mother seems to adopt or just take on so much of the responsibility herself?
I think it's communication. It boils down to communicating both the needs of the parents and the kids. For example, when Kaitlyn got diagnosed, one of us had to quit their job. One of us had to quit and one person had to stay home. She was two years old in our lives. The only way we were going to make this work was for one of us to stay home, and a lot of people say, oh, so your wife stayed home? I said, wait a minute. We discussed that.
I didn't walk into this and said, okay, you'll stay home and I'll go to work. We had a give and take, not just about the the end game. What are you feeling? The fact that my, my wife was, I mean, she was an executive assistant to New York State Senator and she's, she was hot stuff when she worked, so she, she's hot stuff now. I don't wanna get in trouble, so she, she was really good at what she did was my, is my point.
She was really good at what she did, so I didn't want to just assume that that's the way this would work. I wanted to know not only how we would do it, I mean that what we would do, how we would do it, what's your feeling, and then it's important for both parents to constantly check in again, this is the communication. I would come home from work. When I was working two jobs. I was working for whatever diabetes organization. I was going to do the show at night in New York City.
I'd get home at one or two in the morning and I'd come home and my wife would be on our bed and she would be sleeping with all informational systems, all uh, pamphlets and magazines that she had fallen asleep reading about diabetes. So, we both immersed ourselves into this, but at the same time, and I don't, I am not an easy person to live with. Don't get me wrong, she's a saint. But the bottom line is, if you talk about it, the father doesn't have to take the off to the, to the role.
However, how much he does, is how much he allows himself to do and help his wife. I, it, it, it was not so weird to me to say, stay asleep. I'll take care of breakfast today, or, or. You know, even though my time home was very limited, any spare time we had, it was all about the kids. And I think it kept us strong. Financially? How we didn't lose everything is just beyond me. Anybody who goes through this knows.
The challenge with that is so many men are not talkers, they're not communicators. So when you have a child with diabetes or any chronic illness, how do you change that persona? How do you become someone who communicates more and talks more?
How many men coach baseball that have never touched the ball before? They do it because it's important to their kid. It's important to their child. If you take, if it's important to your child, you make it important to you, is my only short answer to that. There's a lot of things we do. I mean, I'm not exactly, a petite kind of guy, but yet also when kindergarten I sat in the same small chair as every other parent did, I had no desire to do that.
But we do that because it's important to our child, and I think that's what it's about.
I'm sorry, I'm trying to keep myself from cracking up. Thinking of you in one of those kindergarten chairs.
It... oh, you go ahead. Let it out. Let it laugh. Gary laugh. It was very funny.
I just wanna bust out.
Just what, what, yeah. And it was, but you know what, but to me that's the answer. It's, you know, friction and friction will only get you heat. So you, you got, you gotta look at it and say, look, this is here. I can't make this disease go away. And you can fight it tooth and nail, or you can do whatever it takes to make it work. Whatever. And that means just that, whatever it takes to make it work.
So how long have Kaitlyn and Rob had Type one now? How many years?
Caitlin was September 26th, 1992. And Rob,
You're gonna make me do math.
What?
But that's 20, 23 years. There we go. All right.
Yeah. That's 33, that's 33 92.
See, you made me do math. You see what happens?
Well, that's because, well, you should be good at math. You have to do conversions usually.
I am, but, and,
and, and Rob was, was March 20th, 2009. So he was 13 and he, it's interesting 'cause he was diagnosed four days after my dad died.
Hmm.
So when I talk to people and they say, oh, I've had the worst week. I got a flat tire at the supermarket. I'm like, oh, they got nothing on you. I can beat that. I can beat that.
16 and 33 years. Have you, have you discovered or uncovered any silver linings to having
¶ Are there silverlings to have a child with diabetes?
children who have type one diabetes?
No. I, I think children are just a silver lining in themselves. Whatever it is, mine have diabetes, somebody else can make 500 feet, uh, baseball, 500 feet. It's watching them thrive. I mean, there was this doctor put his arm around me when Kaitlyn was probably six. I could still see us walking down the hall. I could smell the hall. I can do everything. He said, listen to me. You should hope for college. I, I went, uh, I'm sorry. He said, you should hope for college. He said, this is a na.
You don't know how nasty this is in 1995. This is a nasty disease. I said, are you saying she's going to die? He said, no, I'm just saying you have to be ready for whatever life throws at you. I said, thank you, doctor. And I looked, I'm square in the eye. I. Honest truth. I said, you're no longer our doctor. I said, we're through.
Now, before or after you punched him in the nose.
Well, believe me, we've learned, we've learned to curtail those, but yeah, so I said, you're no, you're no longer our doctor. And I remember, you're gonna get me to do this, but she graduated with her doctorate nurse practitioner heading into a world of practice by herself. I looked up to the sky, I said, I hope you're listening 'cause I got a couple words for you.
That's cool.
It's just, so let's take this full circle. Watching them excel. I wrote, one of my articles was Life with an Asterisk. Every single thing, my son, my daughter, my friend Gary, so many others, they do it with an asterisk. If you understand what that asterisk means, it's gonna help a lot of ways.
¶ Having diabetes is living life with an asterix
Do you think having Type one has benefited your kids in any way?
Okay, let me, let me go to my wife for this. Um, I asked my wife, I said, would you change anything? She said, you know, of course I don't want them to live with this disease, but she's got a lot of outlook like I do. She said they have become who they've become because of everything they have to deal with. So she said, I'm not so sure that if we pull that part of the equation out that they become who they are.
Now physically, of course she said that's the easy part, of course they'd be better off. But it's just however, you have to have a whole different lifestyle to take care of you. I, I'm surprised, I think, I think God's got a great sense of humor. 'cause I'm sure he looks at me and says, we're not gonna give him type two and we're gonna see what he does with it.
'cause you would think a guy by his size has got type two diabetes, but I don't, it's just he's like, well we took two of their kids with type one. Well probably should hold off with him. The truth of the matter.
But who would wanna read a, a blog by someone who just calls himself, dad, you gotta be diabetes dad. Right?
Well, well, it's, well, and it's an adjective I wear, I wear proudly and, and, and not because of me, but because of my kids and being, being in this, in this world because of, of people like, like Gary and so many others out there who do things with this asterisk that are just amazing. And even even parents who do tremendous things where they could have just turned and walked away. I mean, I, I, you know, and I just, Gary Hall just was a, is an Olympic swimmer, was an Olympic swimmer.
He won more medals after he was diagnosed with Type 1D diabetes than before.
He won no medals before he was diagnosed.
No, he did. He actually did. It's happened there.
Well, not a gold.
Yeah, that and that way
there was this Russian swimmer he could never beat.
And then when he got diagnosed, 'cause he thought his, his career was over. Now his dad was an Olympian and he, he worked real hard at it and he got, you know, he ended up with 10 Olympic medals. Now, fast forward to today, the fires in California ruined Gary's house and burned every one of his medals. So they're unrecognizable and he just-- there's a picture out there, you can see it, it's online, where the Olympic Committee called Gary, I don't know what country he went to.
They gave all 10 of the medals back, all 10 of the medals back. I cried. I cried. I cried. I cried. Because it's one thing to do things with an asterisk, but then you lose it and then somebody else comes along and says, we recognize who you are. And there's a lot of, and it, you know what? You don't have to be on an Olympic team. You could be on a little league team, you could be on a lacrosse team every time.
You can graduate college, you know, graduate. I have to tell my patients this all the time. I have to remind them, you know, the things that you accomplish day in and day out, you don't see these as accomplishments, but you've done them living with a 24 7 chronic, pain in the ass disease that has no foreseeable cure and you're still managing to accomplish everything you do and smile. So this is not like a baseball asterisk where they use steroids and you put an A.
Correct.
This is, this is a good asterisk. This means you did it despite some challenges that other people just don't have to deal with.
Not only they have to, they have no idea what they are. They have no idea. I'll never forget what we have now. I have a lot of, I got, my mother had, she had a, a twenty--twenty-three grandchildren and I think 34 great grandchildren.
I mean, when we had family functions, but we would, I'll never forget that-- we were at functions at my mom's house, a party, and Kaitlyn was just off the charts with-- her body, was all rigid and stiff and, and my sister-in-law at the time, she just said, we have no idea what you go through. We have no idea what you go through, and the world doesn't. That's why, and also we don't.
¶ Understanding the Parent’s Perspective
I never, for one second thought, I had a living clue what my daughter and my son go through. And I told them this, I don't, I can't because I don't have it. Conversely though, you have no idea and may you never have an idea on being a parent with a child with this disease. It.
When I meet with parents, I explain to them that, you know, I've lived with diabetes almost 40 years now. That is nothing compared to being a parent of a child with type one, because not only do you have a lot of all the responsibilities and work and effort that goes in, parents also feel accountable for every little thing. My blood sugar goes high. I am like, screw it. I'll get it down eventually, you know? But a parent sees a high blood sugar in their child? They take it very personally.
So it it, it is more challenging being a parent of a kid with type one than it is living with it. Now a word from our sponsor. Byram Healthcare understands that managing diabetes isn't one size fits all, with a full range of CGMs insulin pumps, and diabetes supplies from top brands. Byram makes it easy to get what you need. Hassle-free, shipped right to your door, and Byram's team of experts helps navigate insurance so you can focus on living your best life. Ready for better diabetes care?
Visit byram healthcare.com front slash podcast. Or call 8 6 6 6 9 2 8 0 2 4 and select option three. And now back to our program.
¶ Resources for Dads with Type 1 Kids
Now you're, tell us about, you have articles you write. Tell us about how people can get resources and information about being a good dad with kids with type one.
Well, not to be all and all, but if anybody wants diabetes dad.org, you know, there's usually a monthly column. I'm always looking for people to give me ideas on what they look at, but I think if you're out there in general, one of, lemme give you my favorite place to go. There's a guy on, on Facebook, his name is Tim Brands, and Tim has done dad's battling, dad's battling diabetes D-Dads for a, a long, long time.
And Tim is, he's about as regular guy and he, it was, the thing that was really in imp impeccably encouraging about him is, you watch this one child got it, then another child got it, then another child got it. I mean, and he still runs this website where, and he, he makes it really emphatically correct what-- what you say in that room stays in that room. And you know, sometimes again, dad's, there's a, there's a whole bunch of, of problems that dads need to not only talk about, but understand.
There was one mom that I, she said, no, my child has slept in our bed since uh, he was diagnosed. And somebody at the meeting said, how long was that? He said, two years. And another father said, I'd divorce you. He said, you, you can't, can't be in your bedroom. Mm-hmm. The bedroom is for the parents and it's just, you can deal with anything. You have to work through it. I didn't wanna say, talk about it, you gotta work through it. It's never that easy. We just talk about.
Well, shifting gears a little bit, anything you wanna ask me as, as a dad Who has type one?
Yeah, there is.
¶ How do you explain your diabetes to your children?
Um, I wanna know, was it, you know, sometimes. Parents are, you know, they're a certain way. So by osmosis, the kids pick up who the parents are. Was there ever a time where you had to say, this is what Daddy has? To your kids.
It's interesting. I have four kids and because I've had type one long before any of them were born to them, I, I think it was just natural that dad has diabetes. Um, he, you know, at the time, early on, he would prick his finger a lot. He might give shots, he might wear a pump. To them it was, it was kind of natural and, you know, they grew up seeing that. It's sort of like if you grow up in another country, you just learn the language naturally. It's like immersion therapy.
So I feel like my kids were immersed in my diabetes from the get go. It wasn't a lot I felt I had to explain to them, but when they were old enough, I did teach them about what diabetes is. Uh, 'cause now there're concerns about the hereditary factor and whether they were gonna get it or not. You know, why doesn't mom do this? Why do you have to do it? So that, that I did teach them, you know, just some of the background.
And as a diabetes educator, I, I've gotten good at explaining things in terms people can understand. So I'll, I'll use analogies that, that they can relate to and explain it in, in terms that are understandable for them. So I think any parent who has type one, whether it's a mother, father, or you know, other family member, you have to bring it down to the child's level and really put it in terms that, that they can understand and relate to. We've, we've had fun with it over the years.
I remember when the first CGMs came out and I had a dexcom, STS. This is the first Dexcom. It was a three day unit. I would misplace that handheld receiver all the time, or at least I thought I was my, I had two daughters at the time and I had a deal-- dad lost his Dexcom, you know, whoever found it first, got a dollar. A dollar, then was good money. They would scour the house and those kids were really good. And then I learned later on, after they got a little older, they confided in me.
They said, dad, you didn't always lose it.
Yeah. Yeah. I said they took it, they took it. It's like, it's like what? Years ago when the, when the glucometers used to be you, you put your finger and you put a drop of blood. Even the fact I'm saying it used to be this whole thing, conversation just amazes me. Put a broad, a drop of blood on a meter, a little flashing light and it would give you you reading of your, of your blood sugar.
I didn't know this till years later 'cause a lot of kids went to camp diabetes camp and at diabetes the girls told each other that a certain color nail polish gives you a certain, you see certain reading on, on, on, on, on the, uh, glucometer. It was, uh, so they keep the strip and when they go, you know, then the mother take, of course they, when they went to the doctor, you know, eventually the, you're gonna pay your dues 'cause the doctor says, uh, why is your A1C, you know, 8.75?
And, and mom's like, can't be.
I'm wondering if Kaitlyn ever drew her little brother's blood just to get a normal reading before he was diagnosed, just to make it look good.
Well, she did. She and, and I, I cannot, I cannot tell you the closeness of him and his sister. He's, uh, she's, he just turned 30, she's 35. So there's a good five years difference between them. And when she was probably 18, he gave her a birthday card that anybody would just fall on their knees 'cause this kid doesn't...
nice.
He just said, I, I would not be here without you today. And the fact that she's now. Treating patients and now works for the medical network here in South Carolina dealing with type one diabetes. I mean, she's, but. He could never pull the wool over her eyes. She'd be like, try.
Yeah. It, it is a special bond. Honestly. It's, but when I'm at meetings, conferences with a lot of other people with diabetes, there's, there's a oneness. There's this, there is a bond. This kind of, this unwritten understanding we have with each other. That you know, people who don't have the disease, it's very hard for 'em to understand. But parents are the same way. Parents have a bond.
Yeah. And they, they connect with each other 'cause they know, they can look at each other in the eye and know, yeah, my kids had lows at 3:00 AM now my kids called me from school 'cause they're Sugar's 400 and they've got a test and they deal with that kind of stuff all the time. How did you, I mean, I've got challenges, but you know, it's not like that. I'll get, I'll have a high and low blood sugars and it does affect things.
I hate getting lows, especially with my kids when I'm interacting with them and I'll,
so I was about to ask you, I was gonna say, can you share with us when you've gone through a lower high, where later you're like, oh, I don't
¶ How to explain dealing with high or low blood sugars to your children
know who that was, but I gotta go...
yeah.
Well, did you go back and visit it?
The lows. They're annoying, but I, I can deal with them. The, the really high blood sugars, they change my mood and my personality to a certain extent. And I tend to become a bit short-tempered and rude. And I'm just not myself. You know, I'm not a nice guy to be around. I'm not Mr. Charming like I always am.
Of course.
Yeah. So that's not good with kids. Kids don't, they don't understand that. My wife now, when I'm in a bad mood, she just says, check your damn blood sugar. She knows something's up. So do you circle back with. Just say, look at that. Sorry.
Tell me, tell me, tell me about that. What do you do?
Yeah, I'll apologize to them later. I'll say, listen, I, I apologize if you know what I said didn't sound like me, or if it hurt your feelings. I wasn't really myself. 'cause my blood sugar was very high and I don't blame the diabetes, but It's kinda like Carrie says, diabetes doesn't, uh, define me, but it does explain me. Same thing. I take responsibility for it myself. I'm not gonna say it's because of diabetes has happened.
No, I behave this way because my, because I, my blood sugars got outta control and that's on me. I, i, I do want them to know it wasn't how I really felt at the time. We do change. Low blood sugars? They're, they're a problem too, especially when you're playing with kids, when you're taking care of them. Uh, it can be a real challenge taking the kids to amusement parks and have my pump site come out and have to go to the car, get a syringe, and give shots all day.
You know, that sort of stuff's just not much fun. Um, but yeah. Yeah, there are. There are challenges. It does help me though.
I was gonna ask you the perks that it done anything like that that it done anything like that?
¶ The perks of being a dad with diabetes
One of them comes home from a party or comes home from trick or treating on Halloween, and there's some stuff that looks pretty good to dad. I've, I've faked some low blood sugars over the years. I, I'm, I'm not, I'm not ashamed. Uh, I'll do what it takes to get those treats and... Dad really needs this chocolate bar right now. It's for his health. Or if I'm eating something-- and you've been there, you're eating something and you're really,
I have no idea what,
you love it. You're eating something you love. And the kids are like, dad, can I have some? And I'm like, no. My blood sugar's low. I gotta, I need this right.
You are so bad. You are so bad.
All right. So yeah, I gotta try to keep the sense of humor. I mean, I think that's important. So we start taking things too seriously. It doesn't help anybody.
Well, I think, I think, I think there's a lot to that. I think there's a lot when you can laugh together at anything I. Because you, you certainly cry together a lot. Yeah. And so when you, when you, when you laugh, I mean, is it still a fear of
¶ Screening and Prevention of Type 1 Diabetes
yours that your child could be diagnosed?
Absolutely. My kids have some other autoimmune issues like hypothyroid, so it is something I'm, I'm watching statistically. If a dad has type one diabetes and the mom doesn't, the children have a four to 5% risk of developing it in their lifetime. And if the mom has it, it's about 2%. But still it's worthwhile having the kids checked to see if they have antibodies that cause type one diabetes. If you have multiple antibodies, the chances of developing type one go up exponentially.
And now we have a lot of things we can do to slow delay or even prevent the progression towards insulin requirement. So I encourage dads to have their kids checked for antibodies as well as siblings. You know, if, uh, you have a child with, with type one, the siblings should all be checked. In fact, the parents should be checked. If you're an adult with type one, your siblings should be checked. First degree relatives of people with type one should all be checked for antibodies.
I don't want people putting their head in the sand. I think empowerment is important.
Absolutely. And, and to, to be very clear on that, you need to be checked, not just once. That auto antibody can happen at any time, so you have
That's true.
When we checked Rob, Rob spiked when he was probably three or four years old, he spiked to like 400 something. And then it came right back down to normal again. And then we went to, they said, you know, people said, don't worry about, well, we checked him of course, and it was nothing.
And then Dr. Skyler, who's probably one of the foremost endocrinologists in the world, who's at the DRI, I was talking to him and he said, he said, you gotta, you what you need-- you have to make sure you check that every year if you're not checking that every year. My point, so if you are getting to check, make sure you, you keep it as almost an annual. Type of thing, so,
yeah. Yeah. And is there an easy way that people can be checked for antibodies?
Well, there, there are a lot of trials out there actually. I know Abbott is doing a, uh, Dr. Mettagini is doing a wonderful work with Abbott to, to check about the autoantibodies and what's there and, and... that's another thing. One of my biggest things that I've been involved with in my advocacy has been the missed diagnosis of type one diabetes because it's, it's missed so often. It's a stomach flu. It's a stomach virus.
You know, there was Regan Rule, there was Kaisies, there was, there was all these, these young people who died at very young ages and not to scare people, you know, school nurses-- who are on the front line. If a child comes in and they're, and they're throwing up, it doesn't necessarily mean it's a stomach virus. Probably 90% of the time more it is, but at least get it on the parent's radar that, that if it doesn't go away, they should probably, you know, check.
You can pick up a meter for a couple of bucks now.
So trialnet.org is the website you can go to. You can learn all about your options for getting screened and TrialNet offers free screening all around the country. And it's a, it's a, it's a smart thing to do. Tom, I want, I wanna wrap up.
¶ Advice for Dads of Children with Type 1 Diabetes
If you have one piece of advice for dads of kids with type one, what would it be?
Be there, be there as much as I say, just don't do nothing. You can use that in your child's life too. Be there, be there for your child, be there for your partner. Be there because if you're not, you immediately take away a, any 50% of the chance of them having a as normal life as they could possibly have. If you're not in your child's life, if you, I don't-- divorce, not divorced, whatever it is, if you are not there, 50% of their opportunity is gone. So stay in their life, be there.
And then anything else that you have to figure out that you have to do, can do, will do support research, take up the ball games, do what, whatever it is. But you can't do that unless you're there.
Yeah. That's something you said early on in our discussion. Not everybody is independently wealthy. Not everyone can donate gobs of money to the cause, but you can volunteer your time and you can be there for your child to assist them and guide them and nurture them.
Um. I think what you said about having open, honest communication with your partner about the, the roles and responsibilities is very important, and even people who aren't comfortable communicating that way with a partner, you need to do it because as you said, it's important to your child. It's very important.
And never forget the story of the kid who's on the beach and he, there's this 10 million starfish and he picks up a starfish and he throws it. You know, an old man sees a starfish and he throws it back in the ocean. He walks 20 feet, picks up another starfish, and he throws it back in the ocean, sees another starfish, picks it up and throws it back in the ocean. He does this for about a mile and a half, and he comes across this little kid who's been watching him the whole time.
He says, old man, what are you doing? There's millions of starfish there. He said, you think you're making a difference? And he answers, I am in the ones I'm throwing back.
Mm-hmm.
So, so you can't be everything to anybody. Everybody pick what you can. You know, I did this, there's a mom from Texas, her name is Kim May, and we started this thing called Get Diabetes right. Here's something you can do, you don't think you can do anything. Go to get diabetes right. In there you have posters and flyers that you can print off, and all it is is about diabetes awareness. We get no money for this site.
We don't do, all we have are education material that people can download, print it out and put it up in the library, put it up where we put it up around town because somebody could see that and be, you know, and then maybe they'll, it'll click. So education is is never ending, and we have to constantly look for ways to let people know that this disease can sneak up on anybody.
Yeah, right on Tom, and to you and all the other dads out there, whether you have a child with type one or live with type one yourself, we love you and if you, there's anything you ever need, you reach out. Our, our team at Integrated Diabetes is here to help whatever your needs are.
And you have been, I've called on you. I've called on you when we've had people in need. And Gary, you certainly have been there and, and we appreciate all the work that, that you do not only hear, but in your practice as well.
Thanks for putting your trust in us. So thank you Tom. The links you mentioned are gonna be in our show notes, so I am Gary Scheer reminding everyone out there to keep thinking like a pancreas.
Happy Father's Day.
Thanks for tuning in to think Like a Pancreas, the podcast. If you enjoy today's episode, don't forget to like, follow or subscribe on your favorite podcast app. Think like a Pancreas-- the podcast is brought to you by Integrated Diabetes Services where experience meets expertise, passion meets compassion, and diabetes care is personal because we live it too. Our team of clinicians all living with type one diabetes understands the challenges firsthand.
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On behalf of Think Like a Pancreas, the podcast, I'm Gary Scheiner, wishing you a fantastic week ahead. And don't forget to think like a pancreas.