Highs and lows of living with diabetes

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A mother’s intuition led to a diagnosis of Type 1 diabetes for her young daughter in time to manage the condition.

Tori Blanchette said it was a sad day for her daughter, Kayleigh, when the diagnosis was delivered on Oct. 22, 2013. Kayleigh was eight years old at the time.

“It was really rough,” said Blanchette. “She cried, because she knew Halloween was just a couple of days away.”

Blanchette is sharing her experience as November is Diabetes Month.

Blanchette had realized her daughter wasn’t fitting into her new clothes. It was one month into school, and a pair of skinny jeans purchased the month before were sagging around her hips.

A closer look revealed pale skin, bags under Kayleigh’s eyes and a real sickly look about her.

“When you see someone every day you don’t notice things like that, but I really looked at her and I told her to go get the scale,” said Blanchette.

They had weighed the children before back-to-school shopping. Kayleigh had lost 18 pounds in five weeks.

“That’s a lot of weight for an eight-year-old to lose,” said Blanchette.

She posted a photo to a Facebook mom’s circle asking for other opinions – could it be a growth spurt? Something else? Previous experience told her the probable cause. Blanchette had nannied for a toddler with Type 1 diabetes and the symptoms seemed to fit – physical exhaustion, being emotional, weight loss, extreme thirst.

A visit to the doctor saw the family directed to the Alberta Children’s Hospital.

“That’s when it started,” said Blanchette. “It was three days of intense training, going to the hospital every single day for eight hours. And she had to have her meals there every day because they had to give her the insulin until I was trained to do it.”

What felt like a life sentence at the time has become a manageable condition and part of a new lifestyle for Kayleigh and her family.

They don’t buy junk food anymore and have learned how to count carbs, measure food, calculate insulin dosages and test blood.

It was overwhelming and frightening to begin with though, and still can be sometimes, said Blanchette.

“The numbers are never very straight-lined,” she said. “It’s like, ‘Oh she’s high, or she’s low, or now she’s in the middle. It’s never simple.”

A normal blood sugar level will test between numbers four and seven minimoles per litre (mmol/L). Between seven to 14 mmol/L, diabetics are at a high but manageable level, but anything more than 14 mmol/L requires a shot of insulin to lower the blood sugar level, she said.

High levels might see a person feeling fatigued, sweating and having unquenchable thirst, she said. If high blood sugar persists, it can result in long-term damage to the liver and kidneys, she said.

When numbers dip below four mmol/L, a diabetic needs to be treated with sugar. At the beginning, Kayleigh would eat two packets of Halloween Rockets candies to bring her levels up, wait 15 minute and re-test. If she was low again she would repeat the process, and if it remained low the family would have to call 911.

“Another treatment would be glucosol, which is like a shot of pure sugar,” said Blanchette. “It’s instant. It’s like an EpiPen for diabetics, it kind of wakes them up.”

Going through a low can result in a person passing out, going into a coma and actually dying in their sleep, she said. It’s the scariest part of having a child with Type 1 diabetes, said Blanchette.

“There’s a thing called Dead in Bed Syndrome, where Type 1 diabetics actually die in their sleep because they’re so low and their body’s not waking them up,” she said. “For the first four or five months I barely slept at all because I was testing her all the time through the night thinking she was going to go low.”

Testing was difficult at first – everything had to be manually calculated for the first three years. Kayleigh would test her blood sugar by poking her finger eight to 10 times per day, and the results combined with the number of carbs she was eating would provide the amount of insulin she would have to inject at meal or snack times.

When she was at school, she would text the blood sugar level to her mom, and Blanchette would do the calculation and text back what Kayleigh had to give herself. It’s a little easier now that they have a pump – a computer that calculates the amount of insulin to inject based on blood sugar levels and carb amounts.

Though the injections are easier to calculate, it’s still a lifestyle change that will stay with Kayleigh for her entire life.

Blanchette said it’s important to have a strong support system for the entire family. She joined a Facebook parent support group and tapped in to resources through the Children’s Hospital.

“If I didn’t have someone to help talk me through it and if I didn’t have some training from nannying a diabetic child, I don’t know if we would have handled it as well as we did in the beginning,” she said. “It’s very overwhelming at first.”

She said the most important thing for parents to remember is that it’s nobody’s fault. Type 1 diabetes is an autoimmune disease that people are born with, though it’s not always triggered.

According to Diabetes Canada, about 300,000 Canadians have Type 1 diabetes – about one in 300 children. They are more prone to conditions like vision loss, heart attack, stroke and kidney failure.

But Blanchette said people need to keep in mind that it isn’t a disability.

“A Type 1 diabetic child can be a normal adult,” said Blanchette. “It doesn’t affect their way of life. They can do everything else anyone else can do. It doesn’t have to change their life, just their lifestyle.”

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