While statistics show that family history is a contributing factor in the development of type 1 diabetes, it is rare to find a family like the Langs. Caitlin Lang, her husband Kevin, and their six-year-old identical twin daughters Kayley and Addison are a family of four living with type 1 in the Boston area. We sat down with Caitlin Lang to learn more about their unique story.
You have had diabetes since childhood. But your husband was diagnosed as an adult, years after you met, correct?
Yes. I was ten years old when I was diagnosed. It started out as strep throat, but then I got very dehydrated and lost a lot of weight. My mom took me to the pediatrician and he sent me immediately to [Boston’s] Children’s Hospital. I was there for two weeks with my parents, learning everything we needed to know about insulin and type 1 diabetes. No one in my immediately family had it, so it was a surprise.
Kevin was diagnosed as type 2 in 2007. But three years later, I noticed he was going to the bathroom a lot in the night. I knew it was a red flag and I told him to go to the doctor. He was never overweight and he actually lost weight after his original diagnosis of type 2. So he went and got another evaluation and was diagnosed as type 1 in 2010.
How did he take the news?
He’s afraid of needles, so to get him to do his injections was kind of tough at first. But he knew what it was, obviously, because I’ve had it so long. I helped him get used to it. He just recently went on the Omnipod pump, which is the same one I have.
So you had a few years of managing diabetes as a couple, and your identical twin daughters were living and thriving without T1D. When did that change?
On the girls’ fifth birthday in September 2014. They had their party on a Saturday, and Addison was drinking a lot of juice throughout the day. They were running around a lot with their friends, so at first I didn’t think anything of it. But then that night, she woke up to go to the bathroom and said she was really thirsty. Twenty minutes later, she woke up again for the same reasons. Knowing these were clear signs of T1D, I checked her blood sugar and it was 400. I called her pediatrician in the morning and went to the local hospital. At first, this hospital sent us home because her blood sugar had come down and they would only do a urine test. But as diabetics, we knew what was happening. We had blood work done at our pediatrician’s office and when the results came back, we went immediately to Children’s. We caught it very early, and we knew all about diabetes and how to take care of Addison. So we were only there for two nights.
Kayley felt totally left out. She cried that she wanted to have diabetes, and when Addison came home from the hospital with the pouch for all of her supplies, we had to buy Kayley a pocketbook too. We tried to tell her that she didn’t want it!
And then, unfortunately, Kayley’s wish came true?
Yes, about six months later, she was displaying the same symptoms: thirst, headache, going to the bathroom a lot. So, I checked her blood sugar and it was 360. I cried. Then I called Addison’s endocrinologist, who suggested we get blood work done at our pediatrician. Once it was confirmed that Kayley had T1D, we went straight to Joslin [Diabetes Center]. She only started on Lantus once a day, as we had caught it so early. As it turns out, we were already going to Joslin that day to get Addison started on her pump. We got Kayley’s diagnosis and started Addison on her pump on the same day. Then Kayley got her pump in October.
How does having type one as a family impact your overall management? Do Kayley and Addison realize that other families don’t have diabetes?
Yes, they do know that we are unique. But, it is definitely easier for the girls to see Mom and Dad doing the same things to manage our blood sugar. It’s just part of our life and they are so young, they don’t remember anything before it. Also, we had the option to separate them into two different classes for kindergarten, but we wanted to keep them together because of their diabetes. They know how to look out for each other and that is really comforting.
It’s also nice that my parents are so familiar with diabetes that they can care for the girls on their own, even overnight. Most parents of diabetic children don’t have that support system already built in from day one. I still have to go over everything with them but they get it because they took care of me.
With all of us having T1D, it connects us and brings us closer, however, it does make me sad. Both Kevin and I feel awful that we have given it to our children. The girls handle it well, but they do get frustrated from time to time. Like when they come from school, hungry for a snack and exhausted—they don’t want to check their blood sugar. I tell them it’s just part of their everyday routine, like brushing their teeth. And I remind them that I was just like them, checking my blood sugar as a kid too.
Speaking of routine, what’s it like for your family? Do you all do things the same way and at the same time?
Everyone is on a pump. At dinner, we sit down with four meters and we all check our blood sugars. Kevin and I plate dinner and count up the carbs, and then give ourselves insulin. We then each help one of the kids. We are teaching them little bits at a time, like now, they check their own blood sugar. But they are still learning the pump.
I just started using a CGM, and I’d like to see the girls get one too. But it’s up to them whether or not they want to deal with another site.
All of your devices and supplies and insulin must get very expensive.
Yes, with the four of us, it’s very expensive. We pay a lot out-of-pocket. My husband just took on a third job to pay for it. It definitely exhausts the budget. Our pumps were covered, but I had to fight to get them covered. All the supplies and insulin—it all adds up. I wish the manufacturers would give us a break since there are four of us, but it doesn’t work that way.
Do you get involved with diabetes research or advocacy?
Yes. After Kayley was diagnosed, we started a team called Four-of-a-Kind. We held our first big fundraiser, a golf tournament, as a way to support the JDRF Walk in Boston. We raised close to $8,000! We’re planning another tournament this June and also a Halloween party for kids. We’re hoping all the girls’ friends and people from the community will come out and enjoy face painting, a DJ, costumes, a raffle, etc.
Last fall, I participated in a research trial through Joslin. It was to try a new site that was in development. I participated as a parent of a child with diabetes.
As a person with diabetes and a T1D parent, you have a unique perspective. What advice would you give newly diagnosed parents?
Be patient. It’s going to be okay and this is not the end of the world. Type 1 is manageable, and there are worse things our children could have. Yes, it stinks that we have to carb count, give injections, and birthday parties will never be the same. But they are just like everyone else. They can eat the same foods, they just have a machine attached to them. You have to let them be kids first, and enjoy the same things they always have.
That is great advice! What are some of the things you all do for fun, despite diabetes?
I have been a figure skater my whole life—I’ve won many championships. Today I am an instructor and the girls are now figure skaters. They’ve been skating since they were 18 months old and they too enjoy competing and doing shows. They absolutely love it! Kevin played hockey as a kid, still does play a bit now and also coaches.