All month long, Carb DM is featuring Diabetes Heroes — people who give back to the Carb DM diabetes community. Each story is unique, but all share a common thread — they appreciate the positive impact that Carb DM has on their lives, and want to keep that community going.
Today’s hero is Olivia Tencer. Olivia is a loving and affectionate two year-old, with a personality and humor that lights up a room. She loves dancing around the house, picking peas from her garden, singing in her crib in the morning, and doing everything her older sister does. Despite her mother’s best efforts to introduce her to the full spectrum of colors, her favorite color is pink!
Olivia was diagnosed with type 1 diabetes just before her first birthday. It is uncommon for children with T1D to be diagnosed this early. Less than 1% of all children are diagnosed in the first year of life, and less than 2% of children attending large pediatric diabetes centres fall into the under three-year age group.
Babies and toddlers with type 1 diabetes pose unique challenges for doctors and families. First of all, making a diagnosis at such an early age can be difficult because many babies and toddlers do not present with the commonly known signs and symptoms of diabetes. Olivia’s mother, Adrea, thinks that Olivia may have begun to develop diabetes about 6 months before she was diagnosed!
Olivia’s diagnosis story
It is interesting now to look back at her growth chart from her first two years of life. With the information we have now, it is easy to see that her pancreas probably started to go haywire around the time she was 6 months old. It is at this point she starts a sharp decline on the pediatric growth chart. She had been in the 90th percentile for weight and by the time of her diagnosis she was in the 10th percentile. That decline began precipitously at 6 months old.
Around that time she also started vomiting. I kept bringing her to the pediatrician. They would assure me there was a bug going around. If you look at our online medical records for those months, the columns indicate if it was a well check-up or a sick visit. Olivia’s records for those months state “sick”, “sick”, “sick”, “sick”, over and over and over again, in this long column that stretches across my entire computer screen.
When we got back home, David, left me at the house with the girls and went straight to the pharmacy for a glucometer. It was Sunday, and our pediatrician’s office was closed. He got back, and we checked her sugar. The meter read 587. Dave checked his blood sugar to make sure the meter was working, his read 90. In that moment we knew, only we didn’t know. We packed the car and drove to UCSF and what followed were the worst days of my life.
People who don’t understand what T1D is will sometimes say, “Oh, it is great you caught it so early.” I hear this a lot. I try to explain that it wasn’t really that we caught it early, but rather that Olivia developed T1D at a very young age. The truth is we are sad that we didn’t catch it earlier and that she was in DKA at diagnosis.
Little bodies, big challenges
Another factor that complicates treatment of babies and toddlers with T1D is their size. Babies and toddlers require proportionately lower doses of insulin than older children or adolescents do. Parents who want to start their babies or toddlers on an insulin pump need to know that the smallest basal rate for an insulin pump may still be too high. In some cases, even a single unit or a half unit may cause hypoglycemia in some infants. In those cases, insulin will need to be diluted.
Yet another challenge that parents of T1D babies and toddlers face is preventing hypoglycemia. Adrea recalls that they did not get many suggestions about different types of food options to treat lows:
At one year old, we were still introducing Olivia to basic solid foods. She had never eaten sugary foods and refused to drink juice in any form. We did not leave the hospital with many tools to bring her BG up reliably. We ended up using cow’s milk in a bottle to treat lows for a long time. Even thought the fat in milk delays the sugar absorption a bit, we could get her to drink milk most of the time. It would have been useful to have some more age-appropriate ideas.
The emotional toll
Finally, from the psychosocial standpoint, there is the impact that a serious chronic disorder can have on the child and family. As Adrea says,
I couldn’t help but think about all the fun things I had done in my youth and young adult life. Then I wondered if my 1-year-old daughter would ever get to experience those things. I thought about all the long backpacking trips I had done and wondered if she would ever get to experience anything like that. Would she be able to drink wine as an adult? Have children of her own? Go to college?
Helping families cope
One thing that helped Adrea cope was listening to Scott Brenner’s The Juicebox Podcast:
Hearing the podcast helped normalize all of this for me. It was also nice to hear people talk about diabetes who are a bit more distant from diagnosis, who can laugh about certain things. It helped me get out of feeling so down.
Another was Carb DM. Adrea and her husband David were introduced to Carb DM soon after Olivia’s diagnosis. Since then, they have attended various Carb DM programs, including Little Carbs in the Park, the 5k Run, and the Summit. They are also active on the Brave Buddies online group. Brave Buddies helped reduce the isolation that can overwhelm parents of a young child with T1D:
When you have a child that is diagnosed with T1D there is a distinct before and after. I felt similarly after my first daughter was born and I felt very distanced from my friends that didn’t have kids yet. They didn’t understand those sleepless nights and the non-stop nature of parenting. Now, dealing with this relentless illness, I feel that even my friends that are parents, can’t even come close to fully understanding. Meeting other families with T1D children is such a relief because there is this common ground. I am so happy when I don’t have to being my conversation explaining the difference between type 1 and type 2.
Even at the young age of 2, Olivia is beginning to develop an awareness of diabetes:
The other day, our babysitter was with Olivia and Olivia asked her, “Why do I have to eat the banana?” and our babysitter said, “Because your sugar is low.” Olivia then said, “Why is my sugar low?” and our babysitter said, “Because you have type one diabetes.” Then she asked, “Why do I have type one diabetes?” Our babysitter said, “I don’t know.” The conversation brought tears to our babysitter’s eyes.
But there’s good news as well. Through Brave Buddies, Olivia has been able to meet other kids with diabetes and know she is not alone. The first time she saw another child with a Dexcom, she talked about it for weeks!