Allie Chartoff shares her story of raising a toddler with type-1 diabetes in today’s FIRST Diabetic to Dietetics podcast episode with host Katie Bartel, diabetes dietitian. Additional article is below.
T1D: It’s everywhere
Allie Chartoff was no stranger to type-1 diabetes when her baby girl was diagnosed with the disease.
Her husband had been diagnosed seven years earlier, just one month into their relationship. A colleague, who quickly became a friend around the same time, also had type-1 diabetes and was a social media influencer for the same. She knew a few others with the disease over the years as well. But no amount of exposure could prepare her for when her child was diagnosed.
“It was the worst moment of my life,” says Allie. “It didn’t make it any easier knowing that my husband has diabetes. Everyone’s a snowflake when it comes to this disease. There is not one similarity in the way they manage the exact same diabetes.”
The Toddler Diagnosis
Allie’s daughter Juliette was diagnosed at just 18 months old. She could barely talk, let alone express her emotions to the changes in her body. Still, the flags leading up to her diagnosis were too red not to ignore.
Her urine output had increased to the point of seeping through her diapers. She stopped sleeping through the nights, waking up multiple times screaming:
“We thought, how strange that she’s so thirsty and actually calling out for this,” says Allie, who noted their daughter usually slept straight through the night. “At one point my husband and I looked at each other, and I don’t know what clicked for me, but I remember saying to him let’s just check her blood sugars.”
Juliette’s blood sugars were in the high 300s-400 mg/dl (21-22.2 mmol/L)
“My heart sank,” says Allie.
Managing type-1 diabetes for a toddler is no easy feat. As a parent, you are their pancreas.
“You’re not breathing for them, but it’s literally one step down from that where you’re constantly making decisions in the background for her in order to keep her healthy and safe,” says Allie.
Juliette is now three years old.
When she was first diagnosed, there wasn’t insulin on the market suitable for her needs. Because her body was so small in stature, the available insulins would have been too aggressive.
Her parents had to create a diluted concoction of long-acting insulin.
“We had to extract insulin from the vial, throw it out, and then pull diluent out of a separate vial and inject that into the insulin vial,” says Allie.
That was just one of the toddler with T1D challenges that they’ve experienced in the last year and a half.
A toddler without type-1 having a tantrum is just a toddler. But a toddler with type-1 having a tantrum, is it really a tantrum, or is it the fatiguing side effects of a rollercoaster day of blood sugars?
Those are daily questions Juliette’s parents have to consider.
“I’d say the biggest challenge we encounter now is typical toddler behavior of wanting to snack all day, refusing meals or being a bottomless pit at meal time,” says Allie. “This is normal behavior for a three-year-old, but it’s very hard to manage when that three-year-old needs insulin for everything she eats.”
Juliette’s parents learned early to embrace flexibility and individuality.
They figured out Juliette-specific strategies to manage her diabetes through various trial and error efforts.
They learned how foods affect her blood sugars, and how quick insulin gets into her system through extensive documentation.
They also learned that other people’s experiences with diabetes may not necessarily be the same for Juliette.
“[Flexibility] is a mentality that I’ve always tried to embrace,” says Allie. “This is not about restriction for her, which is an immediate thing that people bring up when they hear she has type-1 diabetes – oh, she can’t eat carbs or she can’t have sugar, or she can’t have pizza. But I’m of the mindset that she can eat whatever she wants; we just have to plan for it. And even if we don’t plan for it, I have tools and techniques that I can use to get us back on track.”
Juliette is now on an Omnipod Dash insulin pump, just like her daddy.
She’s also been wearing a Dexcom continuous glucose monitor from day 1 of diagnosis.
For her, this is normal.
“She’s a little ambivalent to it all; it’s just part of her life,” says Allie. “I wrestle with is that sad that this is the way that she experiences life or is that a great thing that this is not all defining for her, that she is more than just this disease? Depending on the day, both those emotions are at play.”