The PROTECT Study is testing how well an investigational medicine works in children and teens with type 1 diabetes. The hope is that this drug, called teplizumab, would help people continue making more of their own insulin and reduce the need for injections, have better glucose control and/or fewer complications of T1D. To enroll in the study, you need to be within six weeks of diagnosis. That’s a tough time to make a big decision like this.
We caught up with the Lahners family – 16 year old Alex just marked one year with T1D and he’s spent almost that entire year in the PROTECT study. He and his father talk to Stacey about the decision to take part and what happens during this trial. Alex doesn’t know whether he got the drug or a placebo, but he’s only using six units of insulin or less a day!
In Tell Me Something Good – A big achievement for one of the first families Stacey found in the online community. ThisIsCaleb is a high school valedictorian!
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Episode transcription below:
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Stacey Simms 0:00
Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.
This is Diabetes Connections with Stacey Simms.
This week, imagine being newly diagnosed and having to decide right away whether to take part in a clinical trial. The protect trial is for kids and teens and needs to start within six weeks of diagnosis. Alex Lahners agreed to do it.
Alex Lahners 0:42
I know that I don’t want future people getting diabetes. And I didn’t want anyone I knew to get diabetes. So I ultimately was like, I’m not just going to do this for myself. I want to do this for other people who are in the future going to be diagnosed.
Stacey Simms 0:56
Alex is 16 he was diagnosed last year, he and his father talked to me about the decision to take part and what happens during this trial.
And tell me something good. A big achievement for a kid I’ve never met but feel like I’ve known forever. One of the first families I found in the online community. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. Always so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. My son Benny was diagnosed with type one right before he turned two. That’s 14 and a half years ago. Now. My husband lives with type two diabetes. I don’t have diabetes, I have a background in broadcasting. And that is how you get the podcast.
I told you a couple of weeks ago, I had a meetup It was my first in person parent meetup since COVID. I used to do these things all the time. And I’ve done them for years, I run a large parenting Group here in the Charlotte, North Carolina area. And it felt so good to see people again and have these meetups. But what was amazing, and this is what I told you about is that two of the families, newer diagnosed already have their kids in clinical trials. And we live in Charlotte, which is not where a lot of these take place. So I was really impressed. And I think that obviously speaks to the access that we have. We have fabulous endocrinology groups. And we have really great outreach programs from JDRF here in our area. But I think it also speaks to the availability of these trials. These were not happening back when my son was diagnosed back in 2006. And I covered one of these trials though, and we’re going to talk about today.
I talked about this briefly in an episode a few weeks back with Dr. Henry Anholt from prevention, the group behind the protect study. And here’s what he told us at the time. If you missed that episode, I will link it up. But in a nutshell, the protect study is involving about 300 children and adolescents. They’re in clinics across the US, Canada and Europe, you have to be eight to 17 years old, you have to be diagnosed with Type One Diabetes in the previous six weeks. So as I said in the tea’s it’s really quick, you got to know you have it and get in here to the study really quickly. You have to be positive for one of five T1D auto antibodies, you have to produce a minimum of your own insulin, they do those two tests as part of the study. And then you need to be otherwise generally Healthy
Kids in the study are placed into one of two treatment groups, two thirds of the participants will get the actual medication here and 1/3 will be assigned to the placebo group. It’s decided at random and the medication in this is decided at random and it is blinded which means nobody not your child, not you not the doctor will know what group you are in. And the medication is going to sound familiar it is teplizumab This is the medication that we’ve been talking about for several years. That is in many trials that is in front of the FDA right now, as a prevention for type 1 diabetes. It’s been shown to prevent the onset for a couple of years. This is a little different, though, right? This is using teplizumab in kids who are already diagnosed, seeing if they get it right away. What happens. So the Lahners family was kind enough to talk to us about their experience here and I’m going to go ahead and sort of spoil the ending because I was amazed by this. Alex is Benny’s age he is 16 He is not a small kid, and he is using about six units of insulin a day, a day a day. If you’re at all familiar with teenagers, it just sounds absurd. We would love to say of course just from that that the city is a big success the medication works for Get Out Of course, you know, quick look, they don’t even know if he was actually in the the part of the group that got that to close him up. He could have gotten the placebo and I guess be in a very long honeymoon be a really exceptional case. I don’t know.
We will talk about it in just a moment. But first Diabetes Connections is brought to you By Gvoke Hypopen. our endo always told us that if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing we’re usually able to treat those with fast acting glucose tabs or juice. But a very low blood sugar can be very frightening. Which is why I’m so glad there’s a different option for emergency glucagon Gvoke Hypopen pen is pre mixed and ready to go with no visible needle, you pull off the red cap and push the yellow end on to bare skin and hold it for five seconds. That’s it, find out more go to Diabetes Connections dot com and click on the Gvoke logo. Gvoke shouldn’t be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon dot com slash risk.
Alex and Jeremy, welcome to the show. Thanks for joining me. Thanks for having us.
I’m really excited to learn more about your story. You know, it’s it’s interesting at the same age as my son, but very different circumstances before we get to the studies and to play the map and all that stuff. Jeremy, let me start with you. Tell me the diagnosis story. How did you know something was going on?
Jeremy Lahners 6:03
Well, it was a, it was a warm summer night almost almost a year ago. Now, we had noticed over the course of really a couple of weeks that Alex just was not feeling well. And he’s always done kind of a good job of hiding some of his symptoms from us a little bit. And he had just not been feeling well. He was drinking a lot of water and was sleeping a lot. Probably the sleeping was the thing that we noticed more than anything. He just wanted to sleep all the time. Now, school had just ended maybe a week or two prior to this. And a lot of what we saw as symptoms we really chalked up to a teenage kid wanting to just be left alone. Now that school was done and wanting to sleep all the time. So we we sort of wrote a lot of stuff off, we did take him in because he had had indicated he had some symptoms kind of leading up to some of all of this. And our doctor at the time, based on the way that we described things really thought that it was allergies. And so we started allergy medicine, then the day before we took him to the hospital, we just noticed that he was really looking thin. And he’s a wrestler, he has lost weight over the course of the many years that he’s been wrestling and so we know what weight loss looks like for him. But this was very unusual weight loss. And so I actually asked him to weigh in that evening, and he had lost over the course of about a four week period he had lost about 30 pounds. And as 150 pound kid at the time, you know, losing 20% of your body masses is a lot. The next morning, he got up and he just he looked like a ghost you know, fail thin. And
Stacey Simms 7:53
Alex, do you remember how you felt?
Alex Lahners 7:56
I vividly remember all of this. I remember when it first started happening like that said I was drinking a ton of water. And it really just felt like my tongue was constantly sandpaper. And I would pour like, I pour water into my mouth and it would just wouldn’t go away. And I was just drinking so much water. I think my water intake like quadrupled, or more. And it was really odd. I’ve never loved drinking water. But I think that was the first time I was like, Oh my gosh, give me all the water I can have.
Stacey Simms 8:29
What did you think when you got on the scale? I mean, 30 pounds is extreme. I
Alex Lahners 8:34
knew that I was losing weight. I knew that I’d lost weight and you know, every sickness you sometimes you just lose weight. But when I got on the scale, and I think I said I was at 134. And I had previously weighed in like 160 something. Yeah, I was that’s not right. I remember weighing myself a second time, just to make sure. And it came up with the same number. And I was like, it’s I went downstairs I told my dad I was like it says I’m 134. And we couldn’t believe in I remember everyone like my mom, my dad and maybe someone else who was there. We were all just like really shocked at how much weight I had lost.
Jeremy Lahners 9:11
Like I said, the next morning he woke up and just look real thin. And so we took him to the ER, we kind of had decided that was that was the line where it just something was clearly off. We didn’t know what it was. They ran all of their tests, and probably within 20 minutes or so they came back and said, we’re not sure exactly what’s going on. But by the way, your son is a diabetic that could Yeah, I mean it was it was very kind of in passing a little bit. And I remember, you know, this was all during COVID. So only one parent could be with him at the time. So I’m texting my wife, and I’m texting her I said they’re saying that Alex has diabetes, and she says there’s zero chance of that. Tell them to rerun tests because they have no idea Do what they’re talking about. They came back in and said, Yeah, his blood sugar is at 588. And that’s tremendously high. He’s clearly diabetic, we think you should probably take care of this problem. They put us on an ambulance and drove us down to the pediatric hospital in Charlotte. And we spent three days in the ICU, and they were able to get his blood sugar recovered, of course. And it was just a massive, massive crash course in all things type 1 diabetes. At that point,
Stacey Simms 10:31
I didn’t really have the opportunity often Alex to talk to you know, a newer diagnosed teenager who actually wants to talk about this stuff. I have to ask you, how difficult was it? I assume in the hospital, they made you do your own shots? And had you figure everything out? You know, what was that like? So give yourself the first injection.
Alex Lahners 10:48
Honestly, when you first get diagnosed, or at least when I got first diagnosed, I got really lucky because I have some people around me who I had known previously, who were type one diabetic, I got extremely lucky with having resources to reach out to and people to talk to, I have always released previously to diabetes, I had always hated needles, shots, I hated everything. But obviously, getting diagnosed with diabetes, you kind of have to learn to get over it. I just kind of put it in my arm. And I was like, this is going to be a new reality for me, and I just accepted it. And I never I don’t think I remember feeling any sort of way with how the injection felt or how it made me feel. I think it was just kind of like a, this is how it’s gonna be.
Stacey Simms 11:30
So you leave the hospital, you go back to trying to figure out how to do life now with diabetes. But your experience took a turn in that you pretty quickly got involved in a pretty cool clinical trial. Jeremy, how did you find out about the protect study?
Jeremy Lahners 11:46
Well, we sort of jumped headfirst into things, the nurses at the hospital were outstanding and, and gave us all the wonderful material on on jdrf, I reached out to our local jdrf contact to submit Alex’s paperwork and material and whatnot. And, of course, that put us on the mailing list of the various jdrf webinars and things that are going on and we follow it on Facebook, join the Charlotte type 1 diabetes parents group, all those types of things, we sort of dove headfirst into all of those resources. Within maybe a week or so I happened to see a webinar about that was upcoming about this protect study. And we thought, well, we should we should at least listen in we we weren’t really convinced that it was a great idea at the time. But we figured we’re in this now we need to at least listen to what’s happening in the space a little bit and try to participate. You know, it was hard enough, sort of coming to grips with all the things coming at us. But we really did want to try to educate ourselves on on the various medical things that were going on. So that was what led us up to listening to the the details of the protect study.
Stacey Simms 13:04
So what was involved? Tell me, you know, we haven’t been involved in a clinical trial, much to my son’s regret. He’s always pushing me to get him in and we just haven’t been successful. After all these years, I keep trying. So can you share with us a little bit of the process? Because it’s not a local study?
Right back to Jeremy, but first Diabetes Connections is brought to you by Dario health. And one of the things that makes diabetes management difficult for us that is very annoying to me and to Benny. It isn’t actually the big picture stuff. It’s all the little tasks adding up. Are you sick of running at a strips, do you need some direction or encouragement going forward with your diabetes management, with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy. No more searching online for answers. No more wondering about how you’re doing with your blood sugar levels, find out more go to my daario.com forward slash diabetes dash connections. Now back to Jeremy as he starts to take us into their study experience. I had asked him about whether there was a local site it wasn’t a local study.
Jeremy Lahners 14:20
It’s not it is a nationwide study. However, the nearest facilities to us were far from local. I think our nearest facility is technically Atlanta. But we had the opportunity during the the webinar they were interviewing Dr. Haller out of the University of Florida. And he was describing this protect study on to plumas AB and we thought it was a good study for Alex the sort of entry criteria for the study. They were accepting children kids under 17 years if I if I remember correctly, who either Were pre diagnosis or had been diagnosed within the last 45 days. So that immediately qualified us, I reached out during the webinar using chat tools inside the zoom to say, My son was just diagnosed, we’d like to learn more. And Dr. Haller reached out to us via email. The next day, we had a zoom call with just him a day or two later. And he talked to us in a lot more detail about how the study goes and and provided some options for us. So that was all the sort of pre work if you will, from there, we did take a day or two and, and we sat down as a family and talked about whether it, it made sense for Alex to participate. Both my wife and I had participated in some medical research studies. When we were in college, there was a paid program at our college, that you could take participation in some of those programs. So we had a background in it. And I think we were both pretty encouraging of Alex to participate in in the study. But, you know, Alex was 15, at the time, and we felt he was old enough and mature enough that he should really make the decision. And so we didn’t leave it up to him, maybe with some heavy encouragement. But nonetheless, it was his call at the end of the day. And we would have supported that
Stacey Simms 16:27
Alex had to make the decision. What were you thinking?
Alex Lahners 16:29
So the decision was really, honestly hard for me at the time, I was still trying to get over like, just recently being diagnosed and trying to get everything under control, just to understand what was happening to my body. Ultimately, it boiled down to not only had mom and dad done, I guess, trial before they’ve done studies before, but I don’t think anyone who has type 1 diabetes would tell you, oh, yeah, you should go out and get type 1 diabetes. It just it sucks. It’s, it really is not fun. I thought if I would have had someone else 50 years ago, been able to prevent or tell me that I was going to get diabetes and have a drug to prevent the onset of diabetes, I would have taken it in a heartbeat, I would have done whatever it was. And I know that I don’t want future people getting diabetes, and anyone I knew to get diabetes. So I ultimately it was like, I’m not just gonna do this for myself. I want to do this for other people who are future in the future going to be diagnosed or are going to be diagnosed later. I guess.
Stacey Simms 17:36
That’s really a wonderful sentiment. I mean, Jeremy, I don’t need to tell you this. Alex, you’re, you know, you’re so well spoken and really mature about all of this. So thank you very much for for sharing that. We can be goofy later, I’m sure. So Jeremy, you fill out the forms or do whatever you need to do what happened in this trial. This is not a survey, this is a go to Florida, go to the hospital, get a treatment, what happens?
Jeremy Lahners 17:59
We went down to Florida a couple days early so that Alex could get a COVID test. I think he was the first person in our family to get one of the touch your brain nose swabs. He really enjoyed that, I’m sure. And then we started the study. The study was sorry, the the first part of the infusion was 12 straight days of infusion. Generally, it was anywhere from three to four hours per day. We typically did that first thing in the morning. And thankfully, number one, Alex was at a school so it didn’t interrupt school. Number two, my job is flexible enough that I was able to fulfill my work duties in the afternoons and evenings. So it really all worked out for us very much a perfect storm of good, if you will. But for 12 days straight we did the study, the infusion, and that first 12 days was probably the roughest simply because going in you don’t know. It’s a blind study. So you don’t know if you’re getting the drug or not. You could be getting the placebo. So there’s a lot of trepidation and a lot of do I really want to go through all of this pain multiple times through if all I’m getting is the placebo? We really had a lot of conversation about, you know, what’s this going to look like in six months or a year? That was ultimately the study we did, because of the nature of this drug. It is an immunosuppressive. So we did have to quarantine especially again, given it was the COVID times we really had the quarantine. We spent a lot of time in the hotel room just hanging out and like he does Alex slept a lot. That was the two weeks that we spend down there.
Stacey Simms 19:49
Oh, it’s was it painful at all? I mean, is it just a blessing? Just I mean, is it just an IV and the pain is just sometimes when you get an IV put in that hurts, or is there more to it
Alex Lahners 19:59
honestly It’s really just the IV, they do a great job of like, counting you down, like, they’ll be like, Alright, we’re gonna put dive in, you know, take a breath 123, and then they’ll put it in, I have never had problems with it hurting too much. I still like clench my fist and my jaw when they put it in, because you know, I don’t like needles, but it only lasts for maybe 10 seconds at the most. And it is really fast. And once it’s in, everything else is super easy. They tape it to your arm, so it doesn’t move, and there’s no chance of it being pulled out. And they’re just super careful when either the placebo or the supplements AB is injected into you. It just felt like there was cold, I would say water running through my body, and you get this salty taste in your mouth. But besides that, that’s all I can notice.
Stacey Simms 20:52
Well, and I know. And Alex, as you mentioned, they they’re very careful. They’re very good. And Jeremy, when you and I spoke previously, you really said that this was a top notch staff, let me just give you a moment to give them the kudos that you had already mentioned to me off air.
Jeremy Lahners 21:06
Sure. I can’t go into the details of how good a crew they really are. As much as I love our primary endocrinologist, she does a wonderful job with us here in Charlotte, having the opportunity to spend 12 straight days with an active scientist of the study of diabetes, good or bad than sort of being locked in a room with us for a period of time while they administered the drug to Alex, it really gave us an opportunity as a newly diagnosed type one family to ask a lot of questions for, like I said, 12 days straight. We had access to Dr. Haller, and the other doctors plus all of their nurses and assistants, some of whom also have type 1 diabetes. And we were just able to ask all of the questions that are just reeling around in our heads. And all of them had been through different experiences, or had treated patients with different experiences. And they were just able to answer so so many questions, so many of the fears that we had as parents and I think fears on Alex’s behalf as being a newly diagnosed patient were so easily allayed as a result of just being able to spend so much quality time with such good individuals.
Stacey Simms 22:33
What happened after this, you you came home? I mean, I feel like I know the ending to the story. And you’re spoiling a little bit in my introduction in that it doesn’t seem like you’ve got the placebo, it seems like things are working out, let’s just say very differently for Alex than for a typical teenager, in the first year of his diabetes. Is that safe to say
Jeremy Lahners 22:53
it is? And admittedly we don’t know for sure. One of the disadvantages of participating in the study when we did was there’s still that honeymoon period that many kids go through and and so a lot of what we experienced very early on was still questioning, are we just seeing the effects of honeymoon? Or are we seeing the effects of this study drug because his his insulin requirements have been very, very low. That really just continued, we would go back to Florida every four to six weeks, and do blood draws and just a quick one day blood draw to test absorption. So no more drug was ever injected. In fact, his next injection is coming up in about six weeks. But again, he just he seemed to stay in what we thought as new parents to be the the honeymoon period. And even today, nearly a year later, that’s still where we’re at, we’re still kind of in this wonderful period where his insulin requirements are insanely low. From what I’ve heard from other parents.
Stacey Simms 24:02
Let’s talk about that. Give me an example.
Alex Lahners 24:05
I currently have heard from my primary endocrinologist that a kid my size and just my age would probably take around 60 to 80 units a day, somewhere around there. I think I am currently sitting at total daily usage of like 6.4 units a day. So that’s, you know, a 10th
Stacey Simms 24:28
I don’t want to get too personal. But would you mind giving us approximate weight and height? I mean, you’re 16 years?
Alex Lahners 24:35
Absolutely. I’m 16 I’m probably around 178 pounds right now and I’m about 510. So generally speaking, I should be taking substantial more amounts of insulin than I am not tiny, though. He’s got a small kid.
Stacey Simms 24:52
I’m not even sure what to ask Jeremy and Alex because you without knowing the typical experience. It’s I’m not quite sure we know What to ask you in terms I keep, I put it this way. And I’m stuttering around because I can’t ask you what’s the difference? Because you? Yeah, you don’t know. I mean, my son is 16. He’s 215 and almost six feet tall, which is great for wrestlers. We know everything about your bodies. We know how big you are, we know tall you are, when you weigh on a daily basis, but you know, and he probably uses definitely 80 units of insulin a day. I mean, it’s, it’s just remarkable. So how do you treat it? Do you I know you were an insulin pump? Can you use it? I mean,
Alex Lahners 25:30
oh, I do use my insulin pump. But the good thing about my insulin pump is and especially just the T slim in general, is it’s all programmable. And you can set it up by yourself. So I have to set my insulin crazy low. And I have to make these crazy schedules. Because when I first got diagnosed, I think I was on a one to five, ratio of units to carbs. And then I hit my honeymoon phase. And my endo backed it off to one to 15. And I was like, Oh, yeah, this is awesome. And I remember I went out and ate like a fast food burger. And I took like, obviously, like a third of the insulin that I’ve normally taken, I was like, This is great. And then as time progressed, it just kept needing to be moved back, because I would take too much insulin, and I would get low. And I was constantly fighting lows. And I still have that problem today. So there was a time where I was at a one to 100 carb ratio. And I am currently at a one to add carb ratio. And I have to space out when my pump gives me insulin, because if it gives me insulin, like a correction dose throughout the entire day, the amount of insulin that I need to correct is so low that my pump won’t let me put it in. So I have to default to the smallest amount which is like point 100 units of insulin in order to correction me down to where I need to be. That’s your that’s your basal rate. That’s my basal. Yeah, so
Jeremy Lahners 27:00
his basal is point one units. And I think right now you’re on every other hour. Yeah, every other hour. So
Stacey Simms 27:07
every other hours zero. So you go like a point one and then a 0.0. Yeah, that’s amazing. I don’t want to get too far ahead of everything here. And Alex, I hope this continues for you, you know, indefinitely. But Jeremy, what is the goal of this study to see kind of how long they can extend this honeymoon or keep these insulin uses low? Or, you know, what is the hope of they expressed it to you? Or do you kind of just take it, you know, month by month,
Jeremy Lahners 27:34
what they described to us very early on was that some of their participants, were seeing this honeymoon period effectively extend for two to three, sometimes even up to four years. That was really kind of the goal. When we started, as we look at where Alex was in his sort of mature ation process. We sort of thought, you know, if Alex could get through high school, and maybe well into college, still on the honeymoon period, that would be a wonderful experience for him, he’d still have the opportunity to do all of the sort of traditional things that you think of without necessarily significantly having to worry about his diagnosis. That was our mentality going in. I’ve heard suggestions that possibly there’s maybe kind of a continuing dose that you can get over the course of, you know, follow on years. But that wasn’t part of the study or anything that we did,
Stacey Simms 28:32
they are still looking for about 40 people for this study. This is for new onset, folks with type one. What would you say if somebody’s listening, they found the podcast pretty quickly. And they’re debating, is this something that you all would do again, because you said it. I mean, there’s like I said, it’s not as easy as you stay home and take a pill this may involve travel is definitely involves two weeks time and a lot of pokes.
Jeremy Lahners 28:57
Yeah, I mean, looking back, if given the opportunity, again, I would, we would jump on it in a heartbeat. I would say anybody who has the opportunity, and the ability to take the time to do this study, not just the drug itself, but again, the time with the doctors, the combination of those two things is nearly invaluable. So to me that there’s no way that that I would turn down that experience again, even if Alex would have gotten the placebo. I mean, ultimately, even if he would have gotten the placebo, he was still gonna end up in the same condition just sooner. So at the very least the time that we got to spend with the doctors has paid for itself trillions of times over. I guess maybe the other thing that’s that’s worth noting is these are paid studies. So Alex got a little bit of money to spend on his car and turning 16 he he got a little bit of money to spend towards that mostly on gas. So there is some monetary value to it. As well, that’s that’s worth mentioning. But that wasn’t our purpose by any means. It was really the drug and the opportunity to spend time with the doctors would be my two key selling points.
Stacey Simms 30:12
You don’t have to go on the record with this question. But can I ask you how much it paid?
Jeremy Lahners 30:17
It paid? I believe it was right in the neighborhood of $75 per day of visit.
Stacey Simms 30:25
I mean, it wasn’t $5,000 No, no, I want to be clear when people are you know, we’re thinking about it. I wish Yeah. No doubt. It’s a lot of gas.
Jeremy Lahners 30:34
They’ll spend it. But But yes, no, it’s not quite that much. But, I mean, hey, you know, absolutely, yeah. So we go back the end of July. And that will be our next two week visit. We’ve had a couple of visits since then, about every six weeks or so. We take a one day trip to Florida, just to do checkups. But otherwise, this will be the next big one. And then I think from there, if I remember correctly, I think our next visit is six months afterwards.
Stacey Simms 31:09
All right, Alex, I have two non study related questions for you. Absolutely. How do you keep your gear on when you wrestled? What do you do with your diabetes
Alex Lahners 31:18
stuff? Obviously, that was a really big thing. When I first got diagnosed and learning that you’re going to have all this stuff stuck to the side of you, it was like, people are going to grab that when I wrestle. And especially at a high school level, at a varsity level, there is no holding back. If you have a knee brace or anything, people are just going to attack that. That’s what I’ve learned throughout the 12 or 13 years that I’ve been wrestling, I just was like really worried at the start. But I learned that if I was able to at least keep it close, and you know, tight enough in and you know, obviously you wrestled well, and got off the mat sooner than you wouldn’t have any problems. The way that I wrestle with my stuff is I have my Dexcom that’s always on and never take that off for any reason. Never even take the transmitter out unless I’m changing the transmitter or changing my sight. For my T slim though, I just disconnected it and I’d put a stop in, I learned that the adhesive is just as good as the Dexcom adhesive. And if I kept it more on my torso every once in a while I’d put it on my legs. But if I kept it more on my torso, because the singlets are just so tight, it just kind of glues everything to you. And I never really had a problem, I think the biggest part was locations as to where you would want to put your stuff. Obviously, if I put it on like the back of my arm, that’s a more high risk area, because that’s a very frequent place for people to grab while you’re wrestling. So I would put it on the upper part of my thigh, kind of closer to my groin or upper groin, and I would just put it in there. And that’s where I would leave it. When I put my singlet on, obviously, I’d pull it up. But a big problem for me was writing like the singlet would write up my leg and I didn’t want it to pull off. So sometimes I would just pull my singlet just barely above or right on the infusion site so that I could just keep it there. And if it did pull up, it wouldn’t pull my site off.
Stacey Simms 33:20
Do you use anything to wrap it but or anything or everything just kind of sticks, okay, because of your locations. Generally,
Alex Lahners 33:26
I only use like over patches, I use like two Dexcom ones. And I think we had some like aftermarket ones, whenever the Dexcom ones would run out, unless it was like on my arm or something of the sorts, I wouldn’t wrap it. But if it was on my arm, or I just didn’t have any other choice, and it was in a very vulnerable area where I felt like it was about to come off. I would always wrap it with just some like simple athletic gauze. And then I put some athletic tape around it. And that always seemed to hold it. I also have a little like sleeve that I use for swimming and I guess for sometimes athletics, and I just would slip that on over it. It was like a dry fit sleeve. And that worked perfectly to
Jeremy Lahners 34:08
we did wrap your leg the first couple of times, but really, we found it wasn’t necessary. So we sort of stopped doing that by the end of the season.
Stacey Simms 34:17
My second question for you was telling me about the socks.
Alex Lahners 34:21
So with Dr. Haller, I learned that we have a very similar passion for extremely crazy socks, because I wrestle I love wearing weird socks because there’s only two things that there’s three things that you can really change to differentiate yourself from the rest of everyone. It’s your singlet, your shoes and your socks. When you’re wrestling on a team or just for your school. There’s set singlets so the main biggest thing, you can’t get to change, you don’t get to change it all right. And for shoes, there are some flashy shoes but really sometimes they get extremely expensive if you’re going to customize them there. Similar to basketball shoes, so I decided the cheaper option, and the only one that I really had left was socks. So I started a while ago, just getting tons of weird socks and funny socks. I have, you know, pizza socks. Right now I’m wearing these weird math socks that say five out of four people are bad at math. Stuff of the sorts, I walked into the study for this two week study. And on the first day, I met with Dr. Haller, and he noticed my socks, I don’t remember what socks I was wearing. Exactly. But he also showed me that he was wearing some like, funny diabetes socks. And from then on, we’ve just had this competition to outdo each other, even when he’s not in the room physically. Like with me, like if there’s a different endocrinologist in that day, he will send them pictures of his socks in order to show me to try and one up me, but I like to think that I’m ahead. And if he’s listening, I want him to know I will be winning the SOC battle.
Stacey Simms 36:01
Before he let you go. Jeremy, you have said and I forgot to ask you have said that. While he uses so little insulin you do? I guess. I don’t know. I don’t know if I’m struggling because I was gonna say this is a downside, I guess it is, you guys have still struggled with low blood sugars Is that something that you are still dealing with?
Jeremy Lahners 36:20
It is the struggle that we run into right now is again, because his settings are so low, right now, it’s very easy for him to go low. We don’t struggle with highs too much at all. And even when he does go a little bit high, he comes back down very quickly. But seemingly every day, I would say almost every day. He has a slight low episode. And and even overnight, you know, we’ll we’ll have to wake him up sometimes and say, Hey, buddy, you’re, you’re low, you know, eat some sugar. And he’ll groan at us and tell us that we’re wrong. But nonetheless, that is probably the one downside that we have seen. And And listen, we’ll take that downside all day long. But that has been probably the one downside that we’ve struggled with a bit.
Stacey Simms 37:09
Alex and Jeremy, thank you so much for joining me, it’s great to talk to you it was really interesting was really fun. And, you know, thanks for spending so much time with me and my listeners. Thank you, Stacey, this has been great. And I really should say thank you as well for doing the study. These studies are so important. And Alex, as you said earlier in the interview, people who take the time to do this aren’t necessarily helping themselves, but they are helping the people yet to come. So I would be remiss if I wasn’t thanking you and thanking your family for taking the time and the effort in going through all of this. So I think I speak for all of my listeners when I say thank you so much for taking part in this study. It’s our pleasure.
You’re listening to Diabetes Connections with Stacey Simms.
Much More information at Diabetes connections.com or in the show notes wherever you are listening. And they are still looking for kids for this study. So I will link up more information. If you know someone who has just been diagnosed if somebody is maybe going through trial net or the jdrf testing for you know a sibling or another family member has type one, and they want to find out if they haven’t, this is the kind of thing where they have to get in so early, it’s really hard to find people. So they are still recruiting. It was amazing to talk to this family and find out what their experience was like because boy, 16 years old, and using that little insulin really just makes you sit up a little bit straighter. I mean, that would make a very big difference. Gosh, all right, much more to come. And again, you can always go to the website or show notes to find the links, find the transcription and share this with a friends because you never know who might know somebody who could be in the trial
coming up. We’ve got Tell me something good. But first Diabetes Connections is brought to you by Dexcom. And I get a lot of questions about Dexcom coverage for people on Medicare. And why not it’s not as though you stopped needing a CGM, the minute you turn 65 The good news is that the Dexcom g six continuous glucose monitoring system is covered for Medicare patients who meet the coverage criteria. If you have either type one or type two diabetes and intensively managed insulin, you may be covered. To find out more about what that means that if you qualify check out dexcom.com backslash g six dash Medicare. I will link that up with this episode. You don’t have to write it down. You’re going to want to talk to your doctor and you may even be able to get your Dexcom supplies at the pharmacy saving time and money learn more again it’s dexcom.com backslash g six dash Medicare.
In Tell me something good this week is scrolling through Facebook as one does and a bunch of graduation pictures caught my eye now this time of year of course there’s so many beautiful prom and graduation pictures and I’m so happy for all the kids and you know as my kids have And older we’ve grown up with so many people who are now sharing their beautiful graduations and prom pictures. But I had to stop because Lorraine Sisto posted pictures of Caleb. Now, those of you who had kids diagnosed around the same time as I did or earlier, or kids were diagnosed like 2006 2007. During the heyday of blogging, it really just started. There weren’t that many, but it was growing. And man in the next couple of years, there were hundreds of diabetes blogs that so many of us met each other. And now of course, there’s 1000s of Instagram accounts and social media stuff, and it’s changed and it’s still great to connect. But there are some moms and I think you know, who you are, that I connected with in the community and we may have never met I never met Lorraine in person. And as the kids have gotten older, we have kind of communicated to online a lot less. But I have basically watched these kids grow up and Caleb her son was diagnosed just one month after Benny. Benny was diagnosed in December of 2006. Caleb was diagnosed I think he said, He’s obviously a year or two older since he just graduated high school, but he was diagnosed in January of 2007. So we have been in this together for a long time. And I have watched her post these pictures of this fantastic kid and sharing so much information. And so I will link up her blog she hasn’t written in a while. But if you have a small child, and you want to see a real go getter of a kid who met Nick Jonas, they just did so many wonderful things. And she shared a lot of great information over the years that’s still really relevant.
But I’m talking too much because the reason I wanted to share all this is because it Caleb’s graduation picture, he graduated as the valedictorian of his class, holy cow. He’s going to school for engineering, he is strongly considering biomedical to research type one, I mean, just fantastic. So congratulations, Caleb, congratulations, Lorraine and to your whole family. He’s got a brother and a sister and she shared about them as well. I think it’s really important to include the siblings too, but so many fabulous graduation stories this year. And if you’ve ever read this is Caleb or you want to look back on what blogging was all about back in the heyday of diabetes blogging, I will link that up as well.
If you have a Tell me something good story, feel free to reach out I might stumble upon on on Facebook again. But you can always find me Stacy at Diabetes connections.com or reach out and our Facebook group Diabetes Connections, the group. Before I let you go, a couple of quick notes on the next couple of weeks are gonna be really interesting on the show, late June, early July, I have some late breaking types of interviews. So stay tuned on social, I’m gonna be posting and Diabetes Connections, the group on Facebook, with the behind the scenes stuff, I don’t believe there’s gonna be any scheduled disruptions. But you never know. So stay tuned on that some of the stuff is embargoed. I can’t talk about it. It’s technology news, as you can imagine, and I just want to get it to you as quickly as possible. podcasting is tough that way. It’s not exactly an immediate medium, you know, like radio, but I do my best. So I’ll keep you posted on that.
I will be friends for life. That is July 7 through the 10th. And I’m always excited to go and this year more than ever, just because this is the first for me diabetes conference that I’m going to be going to in person since COVID. I cannot wait and I’m doing a new presentation called reframe your diabetes parenting brain. I will be sharing more about that in the weeks to come. But basically, I do this online anyway, do this in my local group too. When somebody posts mom fail and talks about what they did and how they messed up their kids diabetes, I try to reframe it and show them how they really did a good thing. I mean, he wrote a whole book about it, so why not? And then, as I’m taping this episode, we are getting Benny ready for his trip to Israel. I have talked about this on and off for the last year on this show. Many of you know how nervous I am about this. As you listen as this episode goes live, he has gone he is away he has started his trip. And I don’t know that I’m going to get too much sleep. Because while he goes away to camp every summer for a month, and while he’s with fabulous people that I trust, he’s not with us and He is very far away. So I’m probably not going to speak about it or post about it very much because many of you know me, I’m very superstitious, but I cannot wait till after when he is home and after I hug him. I will see if he wants to talk about how it went diabetes wise and hopefully we can report back. Oh my goodness, I’m you guys know, I’m just I’m so nervous. I’m so excited for him. But this is really hard for me. All right.
Thank you, as always to my editor, John Bukenas from audio editing solutions. Thank you so much for listening. We’ve got Diabetes Connections in the news every Wednesday 430 live on Facebook and then here on the podcast on Fridays. So hopefully I’ll see you back here for that until then be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged