Lifetime commitment: What it’s like for kids with type 1 diabetes and their parents

First of two parts

Illnesses are part of childhood, but nothing could have prepared these mothers for the moment their kids, just toddlers at the time, were diagnosed with a disease that they will carry for a lifetime.

In October 2017, Joanne Valencia noticed that her three-year-old daughter, Sophia, had been drinking too much water and sleeping all the time. Joanne thought Sophia was just building healthy habits as she started school.

But in the following months, Joanne observed her daughter’s rapid weight loss and bed-wetting. By December, Sophia was having bouts of high fever and breathing difficulty that was unlike her usual asthma attacks. She also had a hard time waking up.

It took three visits to different hospitals for them to receive a proper diagnosis, and by then, Sophia was already in a comatose state for about 24 hours.

In the third hospital, a nurse told Joanne, “‘Mommy, suggestion ko lang, request tayo ng urinalysis tsaka magpa-test tayo ng sugar.’” (“Mommy, I suggest requesting a urinalysis and let’s do a blood sugar test.”)

That’s how they knew Sophia had type 1 diabetes (T1D).

Diabetes is a chronic condition that occurs when the pancreas produces little to no insulin or the body doesn’t use insulin well. Insulin is important for glucose, a form of sugar, to be absorbed into the cells to produce energy.

While type 2 diabetes (T2D) is the more common disease that is characterized by insulin resistance and often associated with high sugar intake, T1D is an autoimmune disease in which the body mistakenly attacks and destroys insulin-producing pancreatic beta cells.

Sophia’s glucose rose to a life-threatening level of 600 milligrams per deciliter. A normal blood sugar level would be around 70 to 140 mg/dL.

She was already in a state of diabetic ketoacidosis (DKA) that arises from too much glucose and insufficient insulin, which led to her falling into a coma.

The same harrowing experience happened to Jennifer Linga and her son, Neo, who was two years old when he was diagnosed with T1D in 2020.

“For the first ER (emergency room) visit…he was misdiagnosed with asthma,” Jennifer shared. “We were advised na mag-nebulizer sa bahay. Pero as a mom, ‘yung instinct mo iba eh.” (We were advised to nebulize at home. But as a mom, your instinct is different.)

Neo got a proper diagnosis in the second hospital they visited, while he was already experiencing DKA with a glucose level of 500 mg/dL. He was in a diabetic coma for more than two days.

“For me as a parent, it was really terrifying…. It will numb your heart and your mind because you are clueless,” Jennifer said.

T1D usually appears in children, but it can be diagnosed at any age. The risk of acquiring it is higher for people with a family history of diabetes, but both moms said they have no history of it.

“Actually, mas mataas nga ang family history [as a risk factor] sa type 2 diabetes,” said Dr. Lorna Abad, a pediatric endocrinologist at the Philippine General Hospital. (Actually, family history as a risk factor is higher for type 2 diabetes.)

“Kung meron ka nung [distinct] gene na ‘yun [that will make you a diabetic], magkakaroon [ka]. In fact nga, ‘yung antibodies…na sumisira sa pancreatic beta cells, nakita nila sa pagsusuri na may mga batang ‘pag pinanganak, meron nang antibody na ’yon,” she added.

(If you have that distinct gene that will make you a diabetic, you will have it. In fact, research has found that some children are already born with that specific antibody that destroys pancreatic beta cells.)

Jennifer feared for her son’s life. “Nagsisimula pa lang ‘yung buhay [niya], tapos biglang sasabihin na kailangan na niya ng daily injections, ng constant monitoring sa blood sugar, and…laging mag-visit sa hospital.”

(His life was just starting, and then suddenly he was told that he needs daily injections, constant blood sugar monitoring, and frequent hospital visits.)

Tendencies of a misdiagnosis

T1D is far less common than T2D, affecting only about 5% to 10% of diabetics. There is no known cure for it.

T1D does not show any symptoms in its early stages, but it can become severe within a few weeks to months. Some of its symptoms include frequent urination, increased thirst and hunger, sudden weight loss, fatigue, stomach pains, and DKA.

Because T1D shares similar symptoms with other illnesses, the risk of getting a misdiagnosis or delayed diagnosis is high.

As co-founder of the parent-led group Type 1 Diabetes Philippines, Jennifer said most children in their community were initially misdiagnosed because doctors often did not order blood sugar tests and instead diagnosed pneumonia, asthma, or other illnesses with similar symptoms.

“Kailangan dito, mataas ‘yung level of suspicion eh. Kasi mga 40% ng batang may type 1 diabetes, ‘pag pumunta sila sa ospital, parang grabe na ‘yung [condition]…kasi nga, hindi nare-recognize ‘yung early indicator na diabetic pala ‘yung bata,” Dr. Abad said.

(The level of suspicion needs to be high. Some 40% of children with type 1 diabetes arrive at hospitals in severe condition already, because the early indicators for being diabetic were not recognized.)

The doctor emphasized the importance of educating parents and guardians to recognize when a child’s excessive drinking and urinating may signal early diabetes.

Healthcare providers are not an exception. “Siyempre, sa mga primary healthcare providers, aware din sila dapat. Itatanong parati ang history, kahit na ang reklamo ay ubo [lang], ganyan…. Meron kaming tinatawag na review of system, so lahat [ng medical history], nire-review,” she added.

(Of course, primary healthcare providers should also be aware. Always ask about the history, even if the complaint was only a cough. We have what we call a review of system that checks the patient’s entire medical history.)

Common misconceptions

The lack of awareness leads to common misconceptions about T1D.

“Feel ko kasi, there is discrimination pagdating sa T1 and T2,” Joanne said. “Naka-umbrella siya into one na parang hindi nila ‘yan ina-acknowledge as two different things…. [People think] that it’s a condition that you caused yourself.”

(I feel there is discrimination when it comes to T1 and T2. They’ve been categorized into one as if people don’t acknowledge they’re two different things. People think that it’s a condition that you caused yourself.)

Dr. Abad stressed that what kids eat has nothing to do with acquiring T1D, unlike T2D, which can be acquired through poor diet and lifestyle.

With T1D, “hindi mo naman [mapipigilan] ‘yung pagkasira ng pancreas” (you cannot stop the pancreas from getting damaged), the doctor explained.

It’s also not true that children with T1D cannot eat and live normally, as Sophia and Neo are still allowed to have sweets — but with a dose of insulin at the ready. Sophia is also a track athlete at school, while Neo is currently fond of biking and scootering.

“We want to give her the most normal life that she can have, even with this condition,” Joanne said of her daughter.

Neo’s mom Jennifer also said: “Ang galing ng resilience ng mga batang [may] T1D (The resilience of children with T1D is amazing). They can do [many things] on their own.”

Daily life of a T1D kid

Today, Sophia, now 12, and Neo, eight years old, are growing up well with their parents’ care, which includes a strict daily routine.

Both kids wake up at around 5 to 6 am to get their glucose levels checked, then are injected with an appropriate dose of basal insulin to keep their blood sugar steady throughout the day. Before meals, they administer bolus insulin to manage the rise in glucose from food intake.

When they’re sleeping, their parents still have to check their blood sugar through a continuous glucose monitor via a sensor strapped to the kids’ arms.

For children aged six to 12, glucose levels should be between 70 and 120 mg/dL before meals and at bedtime, and less than 140 mg/dL one to two hours after meals.

Meals are typically portioned, with meat and vegetables occupying most of the plate. The kids can also be given a small portion of dessert.

“Kung ano ‘yung kinakain niya, kinakain din namin…. ‘Yon ‘yung parang naging routine sa bahay,” Jennifer shared. (Whatever he eats, we eat too. That has become our routine at home.)

Dr. Abad seconded this habit, saying that the whole family should have the same balanced diet to regulate not just their kids’ sugar, but everyone else’s as well.

Parents as ‘living pancreas’

Managing a condition like T1D is tough, but both Sophia and Neo’s parents accepted the responsibility the moment their children got the diagnosis years ago.

“It’s a condition that requires 24/7 attention,” Joanne said. “Since Sophia was diagnosed, our lives cannot be lived spontaneously anymore. Every day [needs] planning and decision-making. Kasi kung hindi (Because if not), it’s not gonna work out.”

Jennifer said: “He is currently clueless sa nangyayari sa kanya (about what is happening to him)…. You are the one who will inject, you are the one who will know his current blood sugar — kasi sa ngayon, ikaw ‘yung living pancreas niya (because right now, you are his living pancreas).” – Rappler.com