Patient and caregiver education is paramount in type 1 diabetes

Bethany Auble, MD, pediatric endocrinologist at the Children’s Hospital of Wisconsin and the Medical College of Wisconsin, discusses optimal care and management of pediatric patients with type 1 diabetes.

Question:

How do you typically diagnose type 1 diabetes in your younger patients? What usually leads to a patient coming in to see you?

Bethany Auble, MD:

It is often the symptoms that the parents or the primary care pediatrician has noticed probably for several weeks before they come to see us. They’re typically incredibly thirsty. They’re often quite hungry. They, depending on their age, if they had been previously potty-trained, are now wetting the bed or having accidents, and often there’s a fair amount of weight loss associated with a new diagnosis.

Usually those symptoms, a family is like, “Does the child have a urinary tract infection or something of the sort?” [and] go to their pediatrician asking the questions. We will then often get just a random point of care blood sugar when they’re in the pediatrician’s office. They’ll often have the child urinate so that we can look for sugar and ketones and other things in that urine. Then we will often do a full battery of testing at that point because now we know that they have high blood sugar and likely sugar in their urine. We will then get a hemoglobin A1C, which is a measure of blood sugar really over 3 full months. It gives us really a baseline of probably how long this has been going on and gives us a gauge of where our starting point is.

We have 4 type 1 auto-antibodies that we know exist in patients with type 1 diabetes. We will get those 4 antibodies to confirm we know the diagnosis. Sometimes, especially our adolescents, where kind of on the edge, are they type 2, had they previously been overweight or obese or are they type 1 more of the autoimmune insulin dependent diabetes? We get those antibodies.

We also, because we know this is an autoimmune condition, will check thyroid function, thyroid antibodies, and a celiac screen to start, just knowing that those 3 conditions often go hand in hand, especially at diagnosis.

Question:

What are the treatment options you discuss with patients and their families?

Bethany Auble, MD:

In the very beginning with type 1 diabetes, we are really talking about insulin replacement, especially at the very beginning. We teach families multiple daily injections of insulin, meaning they are giving typically a long-acting insulin. Bedtime is typically the time we often give it so the families will give this long-acting insulin. It really acts in the background day and night to prevent some of those blood sugar changes.

Then we will teach families how to administer short-acting insulin with breakfast, lunch, and dinner. Any carbohydrates that they eat, we have a family count the carbs, know based on some calculations how much short-acting insulin to give at those 3 meals. We will have families check blood sugars both before breakfast, lunch, and dinner, often at bedtime and sometimes overnight to kind of see what the trends are doing so we can adjust doses.

We do try to introduce technology pretty quickly because we know the technology in the world of type 1 diabetes is growing and changing and really helping quality of life, helping long-term complications, helping control for these young patients. Even sometimes at our first [time] meeting them, our nurses and our nurse educators will start, especially our very young patients, on continuous glucose monitors, so like a wearable monitor that checks blood sugars every 5 minutes or so and gives families some peace of mind between finger pokes that they know what the blood sugars are doing, especially with sports and sleeping and activity or when a kiddo is at daycare or school. We kind of use that technology as just another set of eyes on the kiddo.

Then usually based on insurance or family preference, we have to do the multiple and daily injections for several months before we can think about an insulin pump. An insulin pump is an external source of insulin that is underneath the skin placed by the family that will give that insulin around the clock and then you don’t need to do injections anymore, that you can tell the pump how much you’re eating. It knows the blood sugar based again on that continuous glucose monitor. It’s pretty smart technology that really helps quality of life for these families without a lot of the ups and downs that we see in some of the shots that we’re used to doing.

Question:

How do you counsel parents and other caregivers who are coping with a new diagnosis for their child with type 1 diabetes?

Bethany Auble, MD:

It is so hard. I think having done this for so many years, every new patient with diabetes honestly is devastated because life as they know it is over. The idea of grabbing a snack on the go or running through that fast food restaurant or doing just normal things can be really challenging.

My first big question or my first big comment when I meet them is I acknowledge that this is big, that this is a lot going on, that I know we have a lot of information we’re going to cover, but take a deep breath and slowly we’ll get through this information. You’re not going to be an expert at the end of our visit. It’s going to take months to really understand this condition and how we’re going to treat it. Every time we see you, we’ll build on some of that information so that it’s not all at once and overwhelming.

I think we also try to let families know that some of the things that they’re most worried about is for us, we can handle. Yes, kids need to have a piece of birthday cake and they need to go on vacations and they need to travel and they need to do normal things and we can do all of that with diabetes. People can go to college and have families and do all the things we’ve always dreamt for our families and for our children and we can do that.

I think recognizing some of the normal things are going to be fine, we just maybe have to modify how we approach meals and sports and activities just with blood sugars always on our minds, but I think reinforcing that it’s going to be okay, that we are a team, and we’re going to be around 24/7 for you guys until you get really comfortable with this, but also recognize that yes, we’ll introduce technology and we’ll do these things that will also help improve your quality of life.

Question:

Are there any exciting areas of research in pediatric diabetes that you are keeping an eye on?

Bethany Auble, MD:

In the last year and a little bit, we have a monoclonal antibody that came on the scene that is primarily used at this point to delay the onset of type 1 diabetes. It’s patients with positive antibodies. It’s probably a family member that they’re like, “Is brother or sister going to get diabetes as well? Because now I know this kiddo has it in my family.”

We check the antibodies. If they have 2 or more positive antibodies and they’re starting to show some signs of blood sugars kind of a little bit, not quite to the level of a diabetes, but it’s developing, we can give a medication to really slow that progression. The data is still marching out that we have seen it 2 years, 3 years delay in the diagnosis, so 2 or 3 years without finger pokes and insulin shots and kind of the complications that can come with it is kind of a big thing.

They’re starting to do some phases of the trial even with newly diagnosed patients, recognizing that maybe some of those little cells that are producing insulin still exist and maybe we can slow the progression or reduce the amount of insulin needed or things. That’s kind of big. We’re working a little bit with some stem cell ideas, thinking about how could we utilize that technology that’s been done a lot in other patients and for other reasons that maybe we can transplant beta cells into a patient’s body and they’ll still make insulin. That’s still in its infancy too, but there’s showing some progress there. Those are the big things, but I know the research is evolving constantly and things are changing.

Question:

How do you optimally transition children in your care into the adult care setting when the time comes?

Bethany Auble, MD:

This is an age-old problem in pediatrics, and we’re not great at transitioning patients. We love our patients. We’ve been part of this patient’s family since their diagnosis, and it’s really hard to both get them ready and also to let them go. We admittedly are not great at this.

We have developed here at Children’s Wisconsin kind of a roadmap because I think a family, they rely on us. It becomes this kind of microcosm of their care, but we do need to make sure that the child, as they’re entering young adulthood, is truly independent in their care, right? Mom and dad have been doing it for a long time, but they need to be able to do it. They’re going to be alone in their dorm room or off at college or somewhere that they’re going to need to do this. We start really shifting our focus of the visit from the parents really to the patient, kicking the parents out of the room a fair amount, talking about lots of important things, but really focusing on that independence.

We also have done something at our clinic which I think is unique in that, especially in that adolescent time, we actually have them go to a different clinic setting and the parents are not essentially invited back or they’re invited back for a little bit and then kicked out. It’s very much meant to be like, this is kind of our transition clinic where we’re really talking about your independence. We’re talking about drinking in college. We’re talking about the things that maybe we’re not discussing at home because it’s kind of taboo, but we need to talk about it for your health and how do you manage diabetes with it. We kind of set them in a different clinic setting to really make this feel like a different setup. This is a different clinic that’s aimed at them.

Then we will often do handoffs to our adult endocrine colleagues. We are affiliated with the Medical College of Wisconsin. We have an awesome partnership with our adult endocrinology team. We do combined education conferences. Their fellows come over, we send our fellows. It’s like a great relationship. Sometimes I’m giving specific provider information and giving a warm handoff to that physician, like, “I have the best family for you. This patient is a young adult, is needing to transition, will be so great.” Trying to make that as seamless as possible, but there are still times where I’m like, “Oh my gosh, you’re still not ready. We haven’t set you up for success.” I think we’re still working on that process too. Just really our young adults need to be ready for independence and we need to get them there.

I think it’s really important to connect with other families who are going through similar things who have had those struggles because these families are not alone. Unfortunately type 1 is relatively common. There will people that come out of the woodwork that try to share with you their experiences. Some of it good, maybe some of it not so good, but I think having just a sense, sometimes it’s venting, like, “This is so hard and I just don’t know what to do,” but also to troubleshoot or, “This is what worked for me,” or, “I use this type of glue with this device,” just these little tricks and tips that sometimes it’s easier to bounce off another parent than always calling our clinic, but I think finding your tribe is really important in this journey.