Parenting a Child with Diabetes: Navigating the Highs and the Lows

How do you come to terms with your child’s type 1 diabetes? Two parents share their stories.

(Photo: FIT)

Ask a five-year-old what gives them joy, and hear them yell ‘chocolates!’

Lives of children are fairly carefree and uncomplicated. From the little that they know of the world, they pick their favourites, and candied treats often top the list.

“He has always loved laddoos!” Harsh Kohli, father of eight-year-old Aarush tells me.

Aarush was diagnosed with Type 1 diabetes when he was four. This essentially means that his body is unable to produce insulin, the hormone required to convert glucose into energy. To administer this externally, he takes 4-5 injections through the day. What this also means, is that he needs to watch what he eats – even laddoos.

Living with Type 1 diabetes is tough for anyone. The insulin injections, monitoring each and everything you eat, checking up on your blood sugar, and coming to terms with the fact that this is how it will be for the rest of your life – takes a toll.

But how does a five-year-old, with little understanding of the condition, make sense of the recurrent pricking of their skin every time they need insulin?

Enter the parents: Holding the child’s hands, slowly introducing the lifestyle changes, checking their sugar levels, administering insulin, and clearing the kitchen and fridge shelves of all that the child must avoid but finds difficult to resist.

This World Diabetes Day, Quint FIT reached out to these very parents – to hear their stories surrounding diabetes, and to understand what it is that they do on a daily basis to ensure the numbers on the glucometer remain normal.

The Early Signs

Aarush’s father, Harsh, is a Type 1 diabetic (T1D) himself. He was diagnosed at age 11.

“Living with diabetes for 28 years, I knew something was wrong with Aarush. But at first, I just never had the courage to get him tested.”

Harsh with his wife and two sons.(Photo Courtesy: Harsh Kohli)

“Then one fine day, on 24 December – I clearly remember it was a Friday – my mother had gone to pick him up from school. He seemed to be extremely low on energy, almost half fainted. We got him tested the next morning itself and found out his sugar levels were around 360.”

Harsh Kohli

Harsh could recognize the signs because of his own experience being a T1D. For Sankalp Malhan, whose family had no history of diabetes, prior awareness about the symptoms helped diagnose his now 10-year-old son, Saransh, just in time (May 2019).

“We noticed frequent urination, bedwetting, extreme hunger, thirst and weight loss. Saransh had always been a very hyperactive kid, so it was very unusual when he started feeling fatigued and exhausted. He told us, ‘Meri Duracell jaisi battery thi. Ab khatam hogayi hai’.”

“The next day, we checked his levels at home. His fasting sugar was 385. Initially, we thought there was something wrong with our glucometer. But once we checked our own levels, we realized this was real. We took him to our local endocrinologist the same day and started insulin.”

Sankalp Malhan

Sankalp added that it isn’t unusual for children with Type 1 diabetes to remain undiagnosed until they eventually lose consciousness and are rushed to the hospitals. This commonly happens when parents aren’t aware of the symptoms, making diabetes education among the masses extremely critical.

What Came Next?

Sankalp and his wife, Raman Malhan, took it upon themselves to read extensive literature, books and articles to learn as much as possible about Type 1 diabetes.

“The first thing we did was redo our kitchen cabinets and discard all refined flour products, biscuits and fried food.”

“Under our doctor’s guidance, we diligently maintained a journal for a whole year of each and everything he ate, and logged in his sugar levels before, after and two hours following his meals. This helped us understand what we should be giving him to eat, how a particular food item affects him, and how much insulin he would need to cover that. Now, with God’s grace, our son is doing very very well.”

Sankalp Malhan

The other important learning as parents, both Harsh and Sankalp added, was to not dismiss or kill the child’s cravings, keeping in mind that moderation is key.

“Initially, I used to try not to give him anything sweet or unhealthy. But I understood soon that the solution is not to take away the laddoo, but to sit with him, split it in half between the two of us, and compensate with a little extra insulin and some physical exercise,” Harsh shared.

“Of course, we can’t do this every day, but at least once a month, we try giving him what he wants. Only recently, he wanted to have pizza, so we made a wheat-based pizza for him at home and he loved it!”

Harsh Kohli

“The fact of the matter is that children are very smart. If they don’t get it at home, they will get it from somewhere else. I realized this when Aarush’s teachers found out he had been hiding and eating toffees in school, resulting in continuously high sugar levels. That’s when I decided, denying him what he wants will not work.”

Handling Your Child’s Emotions

Harsh, despite being a diabetic himself, found it difficult to accept his son’s diagnosis. “I would say my son adapted to the situation better than we did. Adults have more trouble coming to terms with changes.”

“But once I accepted the fact, we started learning more. It is a completely different thing to have your child diagnosed. The way the entire home functioned had to change.”

“Even though Aarush didn’t understand diabetes, he knew what he should and shouldn’t be eating. By the time he moved to his next grade, he realized he is different. He started asking questions: ‘Why doesn’t my teacher give me toffees like the other kids? Why do I have to carry my own food when the school provides breakfast to all students?”

Harsh Kohli

“That’s when we sat with him and had the talk. My wife explained to him that look, you see your father. Just like him, you also have the same problem. It is nothing to worry about, but be mindful of what you eat.”

“He learned very quickly after that. We started interacting at the community level and he met more children with the condition. That’s when he understood that there is something known as diabetes, and that he needs to take care of his sugar levels. Touchwood, he has become extremely responsible now,” Harsh narrates, adding, “For instance, even if a new teacher comes and offers him a chocolate, he will speak for himself and tell them to call his dad to ask if he can eat it.”

Sankalp also shares a similar story – of diabetes having made his son even more independent than he earlier was.

“He was curious in the beginning. In fact, he has even cried to us and said, ‘Why is this happening to me?’ As parents, our heart ached. But we wanted to change his perspective. We took him to an orphanage, explained to him his privilege, and he understood that he is blessed – that there is a simple solution to his condition.”

Sankalp Malhan

Saransh with his family.(Photo Courtesy: Sankalp Malhan)

“Now he knows everything. He knows what he should be eating. He is only 10, but he can even check his sugar levels himself. As I said, he has always been hyperactive. He wants to do everything on his own, including taking the insulin shots. Of course, we are always supervising him. But he is well aware and extremely responsible now,” adds Sankalp.

A Message to Parents from Those Sailing in the Same Boat

Sankalp and Harsh have both started communities for Type 1 diabetics. Speaking to Quint FIT, Sankalp says,

“Parents are extremely disheartened during the first one or two months. They feel like everything is over. Our attempt is to provide them mental support, to explain to them that their child is normal, and that taking insulin is like an addition to their daily routine – the same as brushing their teeth or taking a bath.”

“They shouldn’t blame themselves or feel guilty. The sooner they accept the diagnosis and the fact that this will remain the same for throughout their child’s life, the better it would be for their management.”

Visiting a doctor, reading up on diabetes, and setting an example for the children is where parents should orient themselves. In a way, diabetic children are, by default, leading healthier lives by eliminating junk and processed food and exercising regularly, Sankalp adds, shifting focus to the positives.

Most importantly, parents must immediately inform the school, the teachers, relatives, and anybody else their child may come in contact with. “If you hide it, it will not only risk your child eating something wrong, but it would also undermine their confidence and make them feel like there is a big problem.”

A Doctor’s Word of Advice

In conversation with Quint FIT, Dr S K Wangnoo, Head, Apollo Centre for Obesity, Diabetes and Endocrinology, Indraprastha Apollo Hospital, expressed the need for all parents and loved ones to be aware of the basic signs and symptoms of diabetes.

• Watch out for unexplained weight loss despite your child having a good appetite
• Excessive urination and thirst because of high sugar
• Fatigue, Lethargy, Inability to do day to day activities
• In Type 1 diabetes, there may not be a positive history of the condition in the family

If parents notice any of these signs and symptoms, they should check the child’s blood sugar at home using a glucometer. If the fasting sugar is more than 100 on two consecutive occasions, or if the sugar levels two hours after meals go above 200, they should get alerted and visit a doctor as soon as possible.

“Parents usually go in denial after the diagnosis. There is a marked psycho-social impact on them. So first, we start by counselling them. We give them an educational booklet that defines diabetes in simple terms, and explain to them that their child is absolutely fine – they just need insulin to keep their blood sugar in check. If the sugar is under control, they will lead as normal a life as any other kid.”

(If you are struggling with Type 1 diabetes, or know someone who is, reach out to communities like DIYA (Diabetes India Youth in Action) for support and guidance.)

(The article was first published in FIT and has been republished with permission)