'Journey of Shock and Acceptance': Parenting an 11-Year-Old With Diabetes

This is the story of Naira, a 11-year-old diabetic, and how she learnt to navigate her new normal.

Diabetes in children.

(Photo: Chetan Bakhuni/FIT)

"It hurts, but I'm used to it now", says 11-year-old Naira when asked how she can stand taking multiple injections a day.

"I have to be more careful than other kids, it's because I have diabetes," she says wisely.

Speaking to FIT about her battle with diabetes, the little girl sounds far beyond her years as she walks us through her condition, and how she needs to give up her favourite treats because they can be dangerous for her.

Diabetes in children, also known as juvenile diabetes, can be a life-altering experience that takes a mental and physical toll on the child, as well as their family.

(Photo: Chetan Bakhuni/FIT)

It can also be a difficult diagnosis to swallow.

"It's a huge shift for a child and their parents. The first hurdle is often to get the parents to accept it. The child can then be slowly made to understand about their condition," says Dr Mahesh Chavan, Consultant, Endocrinology, Apollo Hospitals Navi Mumbai.

Naira's Diagnosis: Symptoms, Shock, and Acceptance

"A few months ago we noticed that she was losing weight rapidly despite eating well," Naira's mother, Mariyam, tells FIT.

"She would feel tired a lot. In the evening and at night, she would need to pee more often and feel more thirsty. We thought it was just because she is at a growing age."

Mariyam, Naira's Mother

Mariyam says they didn't take it very seriously at first, but as the symptoms kept on, she grew suspicious that things weren't quite normal.

"We did a blood test. The doctors then told us that we would have to admit her to the Paediatric ICU."

Turns out Naira's blood sugar was so high that she was on the cusp of developing something called diabetic ketoacidosis — a serious life-threatening complication of diabetes.

(Photo: Chetan Bakhuni/FIT)

"If your pancreas aren't producing enough insulin to metabolise sugar into energy for your cells, your body starts using fat for fuel instead. This process produces acids including ketones. Too much rapid build-up of ketones in the body is called ketoacidosis."

Dr Mahesh Chavan, Consultant, Endocrinology, Apollo Hospitals Navi Mumbai

"It's most common with patients of type 1 diabetes, although people with unchecked type 2 can also sometimes have it," he adds.

Signs of ketoacidosis in children include,

• Fatigue

• Fruity breath

• Nausea and vomiting

• Increased thirst and hunger

• Weight loss

Naira ended up having to spend a whole week in the hospital. "She was first kept in the ICU for 3 days. They did a blood transfusion first, and corrected electrolytes intravenously because, in her case, other parameters like sodium and potassium were also fluctuating," says Mariyam.

"The first three days were difficult because I couldn't eat anything, and I was bedridden" adds Naira.

This was in December 2022, when Naira was diagnosed with Type 1 diabetes.

Dr Amrita Ghosh, Consultant Endocrinology, Fortis CDOC, explains,

"Type 1 diabetes is an autoimmune condition where the immune system of the body goes against the body, and harms their own cells, specifically, the pancreatic cells.That's the reason they (type 1 diabetics) are deficient in insulin. Because of that, they have to be on insulin from the first day itself."

Now six months on, she's slowly learned to adjust to her new normal.

"Naira needs 4 shots a day of both, long-acting and short-acting insulin," says Mariyam, adding, "it started with higher doses. Now we're down to half the dose for long-acting and 2 units for short-acting."

From Cakes and Candy to Glucose Monitors and Insulin Shots

(Photo: Chetan Bakhuni/FIT)

How does a child, and even her parents for that matter, come to terms with suddenly going from being a regular kid to living under dietary restrictions and sticking a needle into themselves four times a day?

"Initially, she had very strict dietary restrictions. She would get angry and cranky sometimes when we told her she couldn't have this and that."

Mariyam

"I felt sad sometimes when I can't have cake and sweets at birthday parties. I still sometimes do," says Naira.

But, she adjusted to change fairly quickly. "She's mature for her age. She understands if you explain things to her," says Mariyam.

Mariyam goes on to say that it was a learning curve for her and her husband as well, and finding a balanced ground involved a lot of trial and error and, above all, patience.

"Because she's a kid, we didn't want to stop all kinds of sweets for her. The doctors also advised against it. We just don't give her sugar, but chocolate or some sweets in limited quantity now and then is okay. "

Mariyam

"Plus we monitor her glucose once or twice a week," she adds.

Naira's mother is a veterinary surgeon, and her father is an assistant professor at an engineering college. They aren't always around to give her her shots, and although they keep tabs on her over the phone, she had to learn to do it herself from the get-go.

"She mainly needs to take the one in the afternoon before lunch by herself in school," says Mariyam.

When asked if she's not afraid of the needles, Naira says she was scared at first, but now she's not any more.

"We were apprehensive about her needing to take insulin for the rest of her life, and its a big change for us all, and it took a bit of getting used to. But the hospital staff was very cooperative."

Mariyam

(Photo: Chetan Bakhuni/FIT)

She says, when Naira was diagnosed with type 1 diabetes, a team of doctors conducted counselling sessions for both her and her parents.

"They showed made her take insulin herself from day 1." she says, ädding we go back for a review once in 2 to 3 months too."

This is a standard practice when appraching kids with diabetes, says Dr Ghosh.

"It's slightly challenging to get older kids, the adolescents, to accept their condition when they have a taste for sweets, and there's also peer pressure and discomfort with their own bodies."

Dr Amrita Ghosh

She goes on to explain that to tackle this, they work as a team with a diabetes counsellor, an endocrinologist, insulin counsellor, and a dietician.

"We also do not expect very strict restrictions on foods like no white rice, no potatoes, no sweets, because they are growing children after all, and they need their nutrition," she says, adding, "but we encourage moderation."

Diabetes on the Rise in Indian Kids

There's no saying who can develop type 1 diabetes. Dr Amrtia Ghosh explains, its rarely genetically passed. "It's very rare that someone with type one diabetes wil have a kid with diabetes," she says. And so it's difficult to predict it.

Type 2 diabetes, on the other hand, which is largely considered a lifestyle disease, is also on the rise among children with a direct correlation to a rise in obesity among Indian kids.

"60 to 70 percent of kids in the school-going age in India are on the overweight side, and they are prone to developing type 2 diabetes if their exercise and diet are not taken care of," says Dr Chauvan.

Dr Ghosh also warns of the rise in type 2 diabetes among Indian children. She says, "My youngest patient with type 2 diabetes is 10 years old." Something that was unheard of a few decades ago.

But it's not all a lost cause. While type 1 diabetes requires life-long insulin therapy, both Dr Chauvan and Dr Ghosh say type 2 diabetes, especially in kids, can be reversed. The key is to control diet and exercise more.

"Type 2 diabetes is reversible if the person loses 20 to 30 percent of their body fat. We put them on a very strict diet regimen. We tell the parents to make them more mobile and active."

Dr Amrita Ghosh.