Feature member story: My son's type 1 diabetes diagnosis
Kristy's son, shown here in hospital, was diagnosed with type 1 diabetes at age 14.
Our 14-year-old son’s life changed forever in September 2011. After an urgent doctor’s appointment that morning we rushed to The Women’s and Children’s hospital in Adelaide, and after two hours in the emergency department were whisked to ICU. He was close to going into a coma, suffering from chest pains, and very confused. That was the day we learnt he has type 1 diabetes.
Looking back, the signs had first started a few weeks earlier, when we’d noticed he was losing weight. We made sure he was eating, and were always asking him if he was okay. Everything else seemed fine; he was a teenager, footy finals were here and had a new girlfriend. He would be quiet at times, a bit withdrawn, but it wasn’t that different to what he was normally like.
We have had to come to terms with the fact that our son has a ‘forever’ disease. He’ll be insulin dependent for the rest of his life
Then we noticed a decline in his energy – he didn’t even want to train for footy. Next he started to drink a bit more and told me his tongue felt funny. On the Thursday he started to go to the toilet more, and was drinking even more water, but he couldn’t really say what was wrong. He just didn’t know how to describe how he felt.
On the Friday he went to school, though he wasn’t too interested in going, and that night I decided to take him to the doctor the next day. By then he couldn’t get enough water, was peeing constantly, and felt dreadful. We were at the doctor’s by 9.15am, and they checked his blood sugar level (BSL) as soon as they heard his symptoms. The machine couldn’t even read his levels – it just said ‘HI’. We were sent to the hospital immediately.
I didn’t know much about diabetes, and certainly didn’t know what symptoms to look for. It turned out that his weight loss was due to his body breaking down fat for energy, as he had no insulin. The fat breakdown makes ketones accumulate in the blood – and they’re poisonous, which is why he felt so bad. The constant drinking and urinating were due to the high level of sugar in his blood. I wish I’d known all this then.
After our son was admitted to hospital he spent 24 hours in ICU before he was stable. He had multiple drips giving him insulin and fluids, and was hooked up to machines to track his heart rate, pulse, temperature and blood pressure. He was in hospital for another five days, until he had no more ketones in his blood and his blood sugar levels were stable. We learnt he’d lost 12kg in that time. Thank god he was a bit chubby beforehand!
During those five days our family had a crash course in what type 1 diabetes is, and what his future now holds: the four-times-a-day insulin injections, the six BSL finger prick tests a day, the change to his diet and how it all has to be balanced with his insulin. My son learnt how to inject needles into his stomach, and we had to learn how to do it if he can’t do it himself. We learnt that “hypos” (hypoglycaemic reactions, when blood sugar levels are too low) and “hypers” (hyperglycaemic reactions, when blood sugar levels are too high) can happen extremely fast and can be life threatening. It was a lot to take in.
We have had to come to terms with the fact that our son has a ‘forever’ disease. He’ll be insulin dependent for the rest of his life – without it, he would die. It was hard to accept. We have no family history of diabetes, so where did it come from? But no-one knows why it happens. It’s an auto-immune disease so his body has turned on itself, destroying beta cells within the pancreas, removing the body's ability to produce insulin. Insulin is what allows the body to process sugar to create energy; without insulin, the body can’t process food.
So now he faces a rigorous daily regime of blood glucose management, trying to keep his levels in the normal range. The more time he spends outside the normal range, the greater the risk of serious health complications. Although most people with diabetes look healthy, it ravages most organs and body systems. Complications can include kidney failure, blindness and nerve damage, and heart attack and strokes are common and severe.
We’re still all coming to terms with the diagnosis, but most days our son does well. It’s a lot of work, a 24/7 job – he has to carry so much equipment with him now, everywhere he goes, and he can’t be carefree like a teenager wants to be. But it’s also becoming part of our life.
We received – and still receive – amazing support from the diabetes team at the hospital. We can call the doctor at any time. The district nursing service came to the house to make sure all was going well at home, and they contacted his school to make sure appropriate arrangements were put in place. We joined the Juvenile Diabetes Research Foundation and have taken part in their fundraising events.
We want a cure for type 1 diabetes, and hope that one can be found in the near future. We wish our son and everyone with type 1 diabetes could be free of this and live a normal life again.
Learn more about type 1 diabetes, and how you can donate to help find a cure, on the Juvenile Diabetes Research Foundation website.
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