October 6, 2023
Are you up to date with the latest diabetes information and technology to provide the best care and guidance for your pediatric patients? About 1 in 300 kids are currently living with diabetes and there are new changes with the disease and the medications and technology used to treat diabetes all the time. Join this conversation with kid expert Emily Hassenstab, certified diabetes care and education specialist, to learn about new FDA approvals and technology that will impact your young patients living with and managing diabetes.
Transcript
Dr. Angela Kade Goepferd: This is Talking Pediatrics, a clinical podcast by Children’s Minnesota, home to The Kid Experts, where the complex is our every day. We bring you intriguing stories and relevant pediatric health care information as we partner with you in the care of your patients. Our guests, data, ideas, and practical tips will surprise, challenge, and perhaps change how you care for kids.
Welcome to Talking Pediatrics. I’m your host, Dr. Angela Kade Goepferd. Approximately, one in 300 of our pediatric patients are currently living with diabetes, so chances are you are taking care of several patients who have diabetes, and while most of us learn about diabetes in medical school and continue to care for patients who have it, diabetes is anything but a stagnant disease. There are new changes with the disease of diabetes and with the technology that we use to care for patients with diabetes that are happening all the time. In fact, there have been three new FDA approvals that will significantly change diabetes care just in the last month. Joining us today to dive into the topic of diabetes, living with diabetes, new changes, and technology is Emily Hassenstab. Emily is a certified diabetes care and education specialist here at Children’s Minnesota, and she is not only a kid expert on this topic, but someone who received a type 1 diabetes diagnosis at age 13. Emily, welcome to Talking Pediatrics, and thanks for joining us today.
Emily Hassenstab: Thanks so much for having me. I’m excited to be here.
Dr. Angela Kade Goepferd: I think it’s incredibly interesting that you are not only a health care professional that helps care for kids with diabetes, but also someone who has diabetes yourself. So I’d love to just learn a little bit from your experience of being a kid who had diabetes. So if you’re willing to share with us, I’d love to hear what was that like for you when you were 13 and found out that you had Type 1 diabetes.
Emily Hassenstab: I was diagnosed with diabetes when I was 13, turning 14 very shortly, and I was in eighth grade. It was a really emotional time to be diagnosed with this disease because I had lost a lot of weight, and to a 13 going on 14-year-old girl, that was really exciting, and I felt really excited about that. But then, I learned I had this disease that isn’t going to go away, and I have to do injections, and I have to do all these things. When you start taking insulin, you start gaining weight back, so it was this really huge shift in my perception of myself at a really critical emotional time in my life.
After the initial diagnosis, I got on board pretty quickly. I’ve always been a very type A student, and diabetes is a disease of math, and I really jumped onto that. So I got through that initial burdensome period pretty quickly, and then grew from there. At my diagnosis, I worked closely with the diabetes educator and found her really inspiring. I still think about her to this day. She had really quirky glasses and was really just fun to work with, and she made me feel like my life wasn’t over. That ultimately led me down a nursing career pathway so that I could turn into a diabetes educator one day just like her.
Dr. Angela Kade Goepferd: For those of you who can’t see Emily, she doesn’t have quirky glasses on, but I’m sure that she provides the same great experiences for her patients. So, I’m curious. As you started out as a young adolescent with diabetes, and then became an older adolescent with diabetes, and then became a young adult with diabetes, how did it or did it impact your sense of self and your formation of your identity and your choices, and how you lived your life as a young adult?
Emily Hassenstab: Kids with diabetes have to mature pretty quickly because you need to learn how to advocate for yourself right away. Especially in today’s world of diabetes where there’s a lot of diabetes technology, your disease becomes more visible to others, and so you get a lot of questions from people, and you have to learn how to talk about your disease to strangers who are nosy. In addition to having to become really responsible right away, there’s a ton of decision-making that you make day in and day out. They say that people with diabetes make 180 additional decisions every day specifically regarding their diabetes, and it’s a lot to carry as a kid.
Dr. Angela Kade Goepferd: Wow.
Emily Hassenstab: When you’re entering into high school, which is where I was at diagnosis, people expect you to be responsible, but you’re a teenager. Your brain is not fully developed, and that can be really, really, really hard if you don’t have support from your peers and your family. I think in high school, what was really tough was I was doing injections and not wearing a sensor or any diabetes technology. So, externally, nobody knew what was going on with me, and there was a lot going on in my head, and that is a lot to carry for people of any age, but especially adolescents who are trying to become themselves.
Dr. Angela Kade Goepferd: One commonality of teenagers is they all feel like, “No one knows what it’s like to be me.” Right?
Emily Hassenstab: Mm-hmm.
Dr. Angela Kade Goepferd: “I’m having this incredibly unique experience in life, and no one could possibly understand.” When you have a chronic illness, particularly one that might not be visible to others, there really is a lot going on that no one understands. So there’s some validity to that feeling of “No one gets this.”
Emily Hassenstab: We really encourage kids to attend events for people with diabetes that are hosted by JDRF and ADA, but especially events like Diabetes Camp. Almost every state has a camp dedicated to kids with diabetes, and it’s the most amazing experience to go to because you’re seeing people who are going through it with you. They have the same struggles, and you can talk about that, and it can really change how somebody views themselves once they see others also in the same place.
Dr. Angela Kade Goepferd: Let’s talk a little bit more about your expertise in these conversations that you have with families because I think we could probably all learn from you, particularly if we’re in primary care and have patients who have diabetes. So what is it like to explain a new diagnosis of diabetes, say, to a parent? What are some important things that parents understand, or how might you approach a parent when you’re explaining a new diagnosis?
Emily Hassenstab: There is a lot of misperception about diabetes in the general public, and a lot of fault and blame is placed on people with diabetes. So I really like to emphasize that it’s not their fault, and it doesn’t matter if their kid has Type 1 or Type 2 diabetes. It is not your fault. This is just happening. We need to learn how to deal with it and bring diabetes with us throughout the rest of our lives. So I think really focusing on that this is a blameless disease is important as well as that it doesn’t limit you. There are very few things that you cannot do as a person with diabetes. One is being an astronaut, one is being in the military under certain functions, but just in the past few years, you now can be an airline pilot. You can go scuba diving now that you used to not be able to do, but now it’s really a limitless disease at this point. So I like to focus on that as well.
Then, beyond that, it’s really just meeting the parents where they’re at. If they are still in the grieving process, we keep things simple, and we will build their knowledge when they’re ready for it. So trying to keep things simple at the beginning. If they’re a family that is really pushing back against the diagnosis, also meeting them where they’re at. There might be cultural or religious beliefs that prevent them from accepting that diagnosis right away, and we just have to meet them there and grow together.
Dr. Angela Kade Goepferd: Let’s flip to the other side of the relationship and the patients themselves. So maybe let’s start with a younger kid, so a younger child who’s diagnosed with Type 1 diabetes. How do you explain that to them, or what are some good tools around language to explain the diagnosis and also, the care, and the importance of taking good care of yourself, and doing the math, and those kinds of things?
Emily Hassenstab: The young kids are tough because they do understand a lot, but there’s so much that goes over their head. Oftentimes, my simple explanation is, “There’s a part of your body that’s not working, and it’s not giving you something called insulin, and so we need to give you insulin in a different way.” So going from there, and then we have a lot of teaching tools. There’s this bear called Rufus that you get from JDRF upon diagnosis, and it’s a bear with diabetes. He has a mobile app, and he’s really cool. So using that as a teaching tool on injections, and we’ll put a sensor on the bear so that they have their buddy with another sensor. Using some of those more age-appropriate tools is helpful, and then we also rope in our child life specialists quite a bit to make sure that we’re truly getting age-appropriate toys, and visuals, and hands-on experience.
Dr. Angela Kade Goepferd: What is one of the things that’s most hard for younger kids to understand about having diabetes?
Emily Hassenstab: The hardest thing to tackle is simply getting poked, whether It be their finger pokes or their injections. Luckily, continuous glucose monitors or sensors, CGMs, they are so common nowadays and so well-covered by insurance that we typically get kids on them pretty quickly so we can reduce about half of the pokes a day if we don’t have to do finger sticks.
Dr. Angela Kade Goepferd: All right. Let’s move to teenagers. So older, more sophisticated understanding. What are some key take-home points for working with teenagers who have diabetes or helping educate them?
Emily Hassenstab: Teenagers are tough. There is such a wide spectrum of motivation, and you might have a kid that was like me, a diagnosis that jumped onboard right away. They’re type A. They can handle things pretty quickly. You might have the other end of the spectrum where they don’t want to deal with diabetes at all, and they don’t want their parents involved. Nobody can do anything, and it’s stagnant. Those are really tough situations because you’re dealing not only with the teenager’s emotions and trying to accept this diagnosis, but you’re also dealing with a parent-child relationship, and trying to keep that intact so that the parent can support the child and the child can accept that support. Once you get some support, whether it be just one friend, it can make your day-to-day at school, at sports, at friends’ houses so much easier. So trying to find one person of support in their community can be really helpful.
Dr. Angela Kade Goepferd: What are they afraid of in telling their friends or in telling other people?
Emily Hassenstab: They don’t want to be different. Really, it just comes down to that. Also, things I work with on kids are how to responsibly manage your diabetes, but make it a little more discreet if that’s something that you are really worried about. So I might help them set their alarms on their phone to be a little bit different so that they don’t have to have their phone beeping all the time or creating a plan for, “This is how you’re going to get to the lunchroom from math class so that you don’t have to leave 10 minutes early. You can just leave two minutes early and have it be less of a burden. You’re less different.”
Dr. Angela Kade Goepferd: So we talked a little bit about some of the challenges that kids who have diabetes face, feeling different, dealing with the pain of having to do something that might be an injection or a poke. What are the other challenges that kids with diabetes have that we might not think of or that could help us better support them as pediatricians and pediatric clinicians?
Emily Hassenstab: Diabetes can often be viewed as a disease that you simply are checking blood sugars and giving insulin, and that’s it. It’s not that hard. If you do it, it will work. But there’s just so much more to it, and it’s a disease that involves a lot of planning, and so recognizing that if a kid is coming in and they’re going on vacation next week, it’s not just they’re going on vacation. They need to plan for more supplies. They need to plan for time changes, and how does that affect their insulin regimen? There’s so many more things you have to do to just accomplish normal things in life, and so just being cognizant of that difference and that it is a burden. It’s more than just taking your medicine three times a day.
Dr. Angela Kade Goepferd: What are some ways that kids or adolescents who have diabetes, and particularly, I’m thinking of Type 1 diabetes or insulin-dependent kids, how might their lives be impacted in ways that we might not see? So you mentioned planning for a trip might be different. What about activities like swimming, or performing in a play, or… I don’t know. Things that just are normal kid activities. Are kids’ lives impacted in really significant ways by this diagnosis, or is it pretty easy for them to adapt?
Emily Hassenstab: Activity is one of the hardest things to deal with when you have diabetes because activity can either make you more insulin-sensitive or it can make you more insulin-resistant, and you don’t really know what’s going to happen every single time. So that actually is one of the biggest day-to-day hurdles is managing activity.
Dr. Angela Kade Goepferd: Do kids tend to fall into certain patterns? So I’m just thinking of my own kids’ summers. One’s been in soccer. They’ve been all going to camps, and they’re taking a bus out to camp, and they’re at camp all day. I don’t know when they’re eating, and I don’t know when they’re having snack. Then, one of them is starting cross-country practice tonight. Do kids tend to fall into patterns where they know how their body is going to respond to activity and it’s consistent, or does that change, or?
Emily Hassenstab: Typically, your body responds similarly in similar situations. So let’s say you’ve gone low at soccer the past three nights, you’re probably going to continue to go low at soccer in the future. What can change is what’s happening when soccer starts? Are you running high? Are you already running low? Did you sleep really poorly last night so you’re more insulin-resistant? Did you have a high-carb, high-fat meal at lunch, which you’re now going to spike two hours later? There’s so many other factors, so you do fall into patterns, but there’s still a lot of navigating in the moment that you can’t always get the same outcome even if you do the same steps.
What’s so tough about activity is that in an ideal world, you start planning your blood sugars an hour in advance. In kids’ lives, they want to go to the trampoline now. They don’t want to plan for that in an hour, and so that can be really, really difficult to navigate, especially in the summer months when kids are off of a typical schedule. You try to plan as much as you can, but when something comes up, what’s the best way to take action? Do we eat some extra carbs right now? Do we take your pump off? What do we do in that situation?
Dr. Angela Kade Goepferd: At what age does that transition happen from… and I’m sure it’s different for every kid, so I’m speaking in generalizations, but what age does that transition happen from parents being the primary manager of their child’s sugars, and diabetes, and insulin, ingesting their pumps to the young person themselves doing that on their own?
Emily Hassenstab: We’ll start having that conversation around the age 12, 13. At that point, you should still be supervised. Absolutely, at least be supervised. Are you ready to be independent? It depends on the kid. So that’s where we’ll start having that conversation, and you can do a slow transition. So we’ll talk to parents about, “Maybe you don’t help calculate the dose, but you just let the kid calculate the dose, and you’re the second-hand check or you’re the second-person check,” and then graduating to having them do a meal completely independently, and then at the next meal, follow up with how did that go and talk about how could we have handled that better. So slowly letting the reins go. That is hard to do.
Dr. Angela Kade Goepferd: Which I’m sure you do a lot of work with parents too in helping them support their child to do that.
Emily Hassenstab: Yes. Yeah. It’s been very interesting with how rapidly diabetes technology is changing. For sensor therapy. You’re seeing a glucose value every five minutes continuously, and a lot of the sensors, you can set up so that parents can view it remotely in real time. So the kid is at school, they’re at camp, and the parents are able to see their glucose at home or at work. It’s a double-edged sword because some parents find that reassuring because they can keep an eye on things, but for some people, that’s really anxiety-producing because they’re seeing their kid running around at the playground at 300, and they’re not there to help them. So that is also a coaching piece on how to step back on how frequently you intervene when you’re watching things remotely or how to manage your own emotions when you’re seeing those changes and you’re not there.
Dr. Angela Kade Goepferd: Let’s talk about technology. Let’s lean into that a little bit because you’ve mentioned already a few things that I’m not sure that everyone listening is really familiar with. So maybe let’s just start big picture. You’ve been in the world of diabetes at least since you were 13. What are some of the biggest changes over the last several years to diabetes treatment and management that you think people should be aware of?
Emily Hassenstab: Continuous glucose monitors and sensors have developed a lot in the past few years, and they’ve become a lot more available and used a lot more widely with people with diabetes. A lot of research shows that using a sensor can be the most impactful thing to blood sugar management secondary to insulin use. So getting that technology out there has been huge, and just in the past five years I’d say is when it’s taken off. It’s become so much more accessible and usable.
Dr. Angela Kade Goepferd: Are those those little circle things that you see on people?
Emily Hassenstab: Yep. There’s a couple different brands, but a very common one you see is a little white circle.
Dr. Angela Kade Goepferd: Yep.
Emily Hassenstab: You might see a piece that’s a gray oblong shape or a white seashell, but yeah, something you see on the back of the arm is typically a sensor. Then, you have your insulin pumps, which are a different way of receiving your insulin, and those have been around for a while, but what has developed in the last five years, 2018, is the pumps and the sensors talking to each other, and the pumps making dosing decisions automatically in the background based off of your sensor readings. So the integration of the pumps and sensors is what’s really developed a lot in the past few years so that it helps buffer against the really low lows and really high highs so that your blood sugars can be a little bit more in range more frequently.
Dr. Angela Kade Goepferd: Where does the human piece come in? So for a parent or for a child, if they’re wearing a CGM and it’s interacting with their pump, what are they responsible for doing or changing? Is a lot of it just you put them on and they go, or how much interaction are parents and patients having to do with their technology?
Emily Hassenstab: I love that question because a lot of people think that when you get on an integrated system that the pump is doing everything, and that’s not the case. It’s working in the background to help out, but it doesn’t know when you’re eating. It doesn’t know when you’re active. It doesn’t know when you’re taking the pump off to go swimming. So you still have to put in your carb counts. You still need to put blood sugars in if you’re running high so it can give you a correction. You’re still interacting with the pump frequently enough. It’s just giving a little extra support in the background.
Dr. Angela Kade Goepferd: Another question I had relative to the technology is, how much of this is smartphone-dependent? So are these running off of smartphones? Are you interacting with the device, the pump itself that you’re carrying around? Is it a little bit of both?
Emily Hassenstab: It’s a little bit of both, and that is something I talk about with parents a lot is, “Which device fits your lifestyle best?” because some insulin pumps, you can use a physical pump that you’re wearing, and some are completely app-dependent. Some are hybrid. It really depends brand to brand, what you’ll be getting.
Dr. Angela Kade Goepferd: I mean, smartphones are such a big conversation in parenting and in pediatrics in general, and so I could imagine that having diabetes technology that is even partially app-dependent means access to a smartphone which then brings with it a whole host of other things that maybe parents aren’t ready to introduce at 10, or 11, or 7, or whatever the case may be. So I could see that that might raise a different topic of conversation for families.
Emily Hassenstab: It also leads to the topic of equity because a lot of families that don’t have the financial means to have their child have a smartphone are on government insurance, and that has a lot of limitations of what brands of things are available and if you can get additional devices or not. There’s a lot of barriers to technology as well not only from health literacy, financial literacy, but also just from purely what is your insurance. That impacts a lot.
Dr. Angela Kade Goepferd: Is there data to suggest that then that’s translating significantly into disparate outcomes? So having better access to better technology and integrated smartphone technology, is that translating into improved control and management, and health outcomes, and then those who don’t have access to that are having worse outcomes?
Emily Hassenstab: Yes. I can’t cite any specific real-world data that’s been analyzed. I was recently at a conference where they did a lot of talks about this, and so a lot of separate studies. When you merge them, it definitely shows that, that those with financial barriers, literacy barriers, that they do have worse outcomes.
Dr. Angela Kade Goepferd: Are there programs or strategies that you use as a part of your care for patients to help address some of those health inequities and try to make sure that patients have optimal management and optimal outcomes?
Emily Hassenstab: That’s a platform we’re trying to build more right now is our outreach program for our at-risk groups. That is the part of my job that keeps me up at night because I wish I could do more, and it is hard to change policy, and we have changed policy. I’ve spoken at the Capitol a few times this year, but there’s only so much that I can do when I’m sitting in front of a patient in this moment.
Dr. Angela Kade Goepferd: Right. For pediatric clinicians who want to make sure that all of our patients have the optimal conditions to optimize their healthcare outcomes, what are some of the things that we could be advocating for to help with inequities when it comes to diabetes care and management?
Emily Hassenstab: I would really encourage making sure they are following up with their endocrine clinic because we are the ones that know of the different programs that can get you devices or access to various events or meetups with other kids your age or even just ways to work with your insurance to get access to things. A lot of families will fall back on their PCP, and they don’t understand why they need to go see the diabetes expert too, and so making sure that we have that full conversation that yes, it’s important to see me for the growth of your child, but it’s also important to see the diabetes team specifically for that reason.
Dr. Angela Kade Goepferd: Well, Emily, thank you so much for joining us today. I really loved the conversation and learning about your journey, but also learning a lot more about how we can help support our patients and families who have type 1 diabetes. So I appreciate the conversation today.
Emily Hassenstab: Yeah. Thank you so much.
Dr. Angela Kade Goepferd: Thank you for joining us for Talking Pediatrics. Come back each week for a new episode with our caregivers and experts in pediatric health. Our executive producer and showrunner is Ilze Vogel. Episodes are engineered, produced, and edited by Jake Beaver. Amie Juba is our marketing representative. For more information and additional episodes, visit us at childrensmn.org/talkingpediatrics, and to rate and review our show, please go to childrensmn.org/survey.