Most of us understand diabetes as the type 2 form of the disease, the condition that causes the level of sugar in the blood to become higher than normal. However, type 1 diabetes is a very different sort of illness. It is an autoimmune disease that occurs when the body’s immune system attacks the insulin producing cells of the pancreas gland, stopping the production of insulin. If undiagnosed and untreated, the condition can be fatal.
reland has one of the highest rates of childhood type 1 diabetes in Europe with 27.1 cases per 100,000 people. Up to five children and teenagers in Ireland are diagnosed each week with type 1 diabetes and 10pc have a late diagnosis resulting in critical illness.
Professor Edna Roche is a consultant paediatric endocrinologist at CHI Tallaght University Hospital and professor in paediatrics at Trinity College. “People think children don’t get diabetes but children classically get type 1 diabetes. Generally, this type of diabetes comes on fairly quickly,” says Prof Roche. “The symptoms have a very short history of two to three weeks, maybe a couple of months.”
Ruth with her husband Simon, and children Robyn and Oisin
So what are the symptoms parents should look out for? “Because the sugar level builds up in the blood, the body tries to get rid of it by passing it out in the urine, so symptoms are going to the toilet frequently and in large volumes. Toilet-trained children start wetting the bed again or get up at night to go to the toilet where they never did before, drinking much more than usual, not just fizzy drinks, but anything they can get their hands on.
One parent said they knew they had to do something when their child started drinking the bath water, so there will be significant thirst and going to the toilet, and they may start losing weight as well, and they’ll be tired. In association, you can have minor symptoms like increased appetite, lack of concentration, upset, frequent infections, and for small kiddies they sometimes might have constipation.”
It’s still not known what causes type 1 diabetes, but it is suspected that there is an environmental trigger. “For the vast majority of people it’s a bolt out of the blue,” says Prof Roche. This was the case for Ruth O’Mahony from Wicklow, whose six-year-old daughter Robyn was diagnosed with type 1 diabetes last year. Her symptoms were seemingly innocuous. She was more thirsty than usual and she needed the bathroom more often.
“I kept on Googling the symptoms, trying to get something other than type 1 diabetes to come up. I was hoping it was a growth spurt or a developmental stage, but type 1 diabetes kept on coming up.”
She booked an appointment with a GP and after a quick urine test, she was sent straight to the hospital. They stayed there for a week and were trained in how to look after Robyn, which is a complex new challenge. Ruth and her husband Simon need to check Robyn’s blood-sugar levels at 3am every night. “If we check her and she’s high we’ll be watching and checking her and might have to wake her to give her a Capri-Sun or some milk. The sleep deprivation takes its toll but you get better at managing it.”
Robyn with her brother Oisín
With type 1 diabetes, no two days are the same. “It’s different every day,’ says Ruth. ‘When we got the diagnosis, I thought, in a month or two everything will be grand, we’ll be on it.” But the smallest things can impact Robyn’s blood-sugar levels. “If it’s a wet day, her blood sugars might drop so she’ll have to do some exercise and it’s the opposite on a hot day where they might have PE in school. She has a wonderful teacher and SNA and they’ve been fantastic in getting the knowledge and checking things and making sure she’s minded.”
Likewise, ordinary things that we take for granted, like going to birthday parties or playing sports, can be a big deal. Blood-sugar can rise during exercise, which means simple things like going to football training need to be closely monitored. “People are very kind and considerate,’ says Ruth. ‘We had one birthday party when Robyn was on multiple daily injections and the mammy contacted me and rejigged a lot of elements of the party to help out with her.”
For parents who might be worried about their child, Ruth says you know your child best. “Trust your gut. Instinct brought me to the doctor, I just felt there was something off. As mothers we can be cautious for fear of seeming hysterical or an over-the-top mammy or because of Covid people might think, oh sure we’ll wait and see. We caught it early and Robyn didn’t end up in a coma and there was no long-term damage done.”
In 10pc of childhood diabetes diagnoses in Ireland, a late diagnosis can lead to critical illness. In severe cases, the body can go into diabetic ketoacidosis (DKA), which is when the body starts burning fat as fuel, and causes acidic ketone bodies to build up and change the acid level in the body. This can cause coma and in the worst cases death. “DKA is something we are still concerned about,’ says Ruth. “You just have to watch.”
She is determined that Robyn will have as ordinary a childhood as possible despite her illness. “The team in Tallaght maintain she needs to be a child first and diabetic second.” There are still challenging times. “We change her sensor once a week and the insulin pump every three days. That’s not great and she doesn’t like it. It’s not fun but we have to do it. We can’t approach things in a ‘my poor baby’ way. Some days it’s too much and she’s tired and crying and you’re having to do something quite intrusive to her. A lot of the management is invasive. She has to finger prick three times a day and you’re having to do it to her, but she’s doing her own finger pricks now and it’s helping her.’
Robyn was diagnosed with type 1 diabetes last year
Ruth agrees it can be challenging, but says they take their lead from Robyn. “She has dealt with this incredibly graciously and we pull it together because of her good example.” Symptoms can be subtle and easily explained away, says Prof Roche. Diabetes Ireland this week launch an awareness campaign with their TEST checklist of symptoms for parents to refer to. It stands for: Thirst (increased), Energy (reduced), Sudden (weight change), Toilet (trips increased).
“If your child has any of the TEST symptoms,’ says Prof Roche, “your doctor or pharmacist can do a simple test that will confirm or refute if your child’s sugar levels are high. If you’re worried and in doubt go to your A&E.”
For more information log on to diabetes.ie