I’m not much of a sharer. In fact, aside from my close friends and family I tend to play my cards close to my chest. But today, I’m inclined to let you all in to what goes on in my life. Every minute of every day.
Today is World Diabetes Day and I am a Type 1 D Mum.
I’m choosing to share our story with you, not for pity or attention (2 things I just can’t deal with) but because I think it is important to share not only accurate information but also the misconceptions and the struggles. I can only do this from my perspective; I cannot possibly know what it is like to live in a body that doesn’t produce a necessary hormone. But I do see the way it affects my son, his brother and my husband.
This is our story.
On the 1stof June 2014, my family and I were at Melbourne Airport waiting to fly to Fiji. The year so far had been chaotic, we’d sold and bought a house, my husband had been away lot for work and had recently resigned, so the holiday was perfect timing. Sitting in the lounge, Noah our eldest son drank an entire bottle of water then promptly bolted to the loo. He did this about 20 minutes later, then 20 minutes later. I must admit that my first reaction was frustration and annoyance. ‘Seriously?’ I’m sure I muttered under my breath. But deep down I had this awful feeling. Classic symptoms of diabetes.... Surely not, I thought.
As a podiatrist, we spent a huge chunk of timing learning about diabetes. Mainly Type 2 as this is the far more common version. Symptoms, pathogenesis, treatments, complications. Our study was extensive. But as my brain often leans towards the worse case scenario, I tried to put this gut feeling from my mind. Looking back at photos, it is glaringly obvious, and I wish I had been paying more attention. He was so skinny, but of course, as a parent of an 8-year-old boy I had put that down to growing. He also had a small cut on the outside of this mouth for months that we had been treating as a cold sore.
Rapid weight loss and slow healing combined with excessive thirst and frequent urination are the classic symptoms.
But as they a say ‘hindsight has 20:20 vision’.
We made it to Fiji. I had this gnarring feeling in the pit of my stomach. He was still drinking heaps. I texted my sister who is a doctor, she talked me off the ceiling by saying that is probably just a UTI and to take him to the doctor in the resort in the next couple of days if it hasn’t improved. But it got worse. One day I decided to monitor his fluid intake and output. He drank 4 litres of water between 7 am and 12 noon and went to the toilet some 20 times. You see, when someone has diabetes the pancreas doesn’t produce enough (or any) insulin. Insulin is required to get the glucose from your blood stream into the cells where it is stored for later use (like during periods of exercise). Without insulin, the glucose just keeps circulating in the blood. The body, which is incredibly clever, increases the rate of urination in an effort to basically wee it out. So then you are incredibly thirsty. And the cycle continues. Over the next few days this continued. He woke up in the morning with soaking bed sheets. This was so unusual as he had never once wet the bed. He was tired and pale.
We were supposed to head out to one of the islands but instead were taken to a GP in Nadi. In the taxi, Noah was so sleepy. I did all I could to keep him awake. And then he breathed on me. And at that point I knew, without a shadow of doubt that my baby boy had diabetes. We were taught that the breath of a person with undiagnosed diabetes would smell like acetone. Nail polish remover. And that is exactly how it smelt.
The clinic wasn’t like our clinics in Australia. But I can tell you I breathed a sigh of relief when the medical degree on the wall said Monash University. The GP was a Fijian man who had been trained in Australia. You may like to call my judgmental at this point, but it was my child who was sick and our medical training is some of the best in the world. Go ahead if you like, it doesn’t worry me. We went in to the doctor’s room and I told him about the symptoms and how I suspected in was diabetes. He told us that it probably wasn’t, but he would do a glucose blood test just to be sure. It took 10 seconds for our worlds to change. Completely. The doctor leaned back in his chair. I asked what the reading was. He turned the glucometer so I could see. All it said was ‘HIGH’. When these machines say that, the blood glucose is over 30mmol/l. It should be between 4-6mmol/L. At over 30, you are sick. Your body starts to break down the fat and you produce Ketones. Too many ketones and you can end up in ketoacidosis, which is what Noah was in. Now, I’m not inclined to panic. In fact I am pretty good in situations like this. But the room spun. It actually spun. My hubby Ben said something about treatment and what we do now, but it was like he had said it in slow motion. He needed insulin quickly. And I just wanted to be at home.
The nurse drew up the syringe and Noah looked at me with the saddest eyes and said ‘ Am I going to have to an injection? To which I replied yes. He then asked ‘Am I going to have to have an injection tomorrow?’ Yes Noah. ‘And the day after?’ Yes Noah. ‘And forever?’ He burst into tears, as did I, as did Ben. It was the worst moment of my life. He has only cried once since.
It took about 2 hours to bring his levels down to a point where we could fly home. The lovely taxi driver who had bought us to Nadi some 6 hours before was still waiting with our luggage. Ben managed to get us on a flight, so we boarded the plane with a vial of insulin and 2 needles. And ZERO practical knowledge. When I look back now I am horrified. What if something had happened? Yes I have good knowledge about diabetes but I knew nothing about what to do in an emergency, or even how much insulin to give him. I don’t even think we were given a glucose testing kit. When we landed I have never ever been so grateful. We went to our GP who phoned the Royal Children’s in Parkville and Noah was admitted. He spent 5 days there being stabilised, as we were educated on all things diabetes. My prior knowledge was invaluable as it allowed us to skip the initial learning and move straight to the treatment and management of this incurable condition. This kid, who was only 8 blew everyone away were on day 2 he asked to give himself his injection. His maturity and acceptance of his ‘new normal’ was astounding. I know many adults who have not acted with the grace Noah did.
And so it was. Needles, finger pricks, different food. And repeat. And repeat. And repeat.
We’ve had our ups and downs. Really high blood sugars. Really low blood sugars. Frustration when there seems to be no rhyme or reason for these readings. He dropped off his growth curve at one point, which worried the doctors, as kids with T1D can sometimes be small because of the interaction between insulin and growth hormone. He’s given himself too much insulin on camp. He has had kids tell him that he clearly ate too much junk food, which is one of the biggest misconceptions. T1D is an autoimmune disease that is no ones fault. He's missed a lot of school.
In January of this year Noah was put on a pump and given a continuous glucose monitor (which means less finger pricks). This incredible technology has given him far more flexibility and made life just that little bit more manageable. But it is still hard. I watch him at baseball as he continually disconnects and reconnects his pump, trying to do it without people noticing. I see him turn down lollies, and soft drink and ice cream at parties and my heart sinks but bursts with pride at the same time. I see how difficult it is on our other son, who wants to eat things other kids eat. And how the constant attention on Noah has made him feel less important. Diabetes affects him too. I worry constantly about whether he will achieve his full potential and whether or not he will be victim to complications down the track. I worry when he isn’t feeling well or when he has a pain in his stomach. I try hard to not greet him at the end of his school day with a question about his readings.
He is a child with diabetes, not a diabetic.
And I don’t want this to be his story.
You never get a break from it. And I don’t say this because I want anyone to feel sorry for me, and I know that Noah most certainly doesn’t want people to feel sorry for him. But it’s tough. Really tough. Especially when you know it was you who passed on the autoimmune gene.
When people say that a child is your heart running around outside your body I know what they mean. My beautiful boy once said ‘there’s far worse things people have’. The maturity still blows me away. And he is right. Diabetes is manageable, well funded and the research going on is astounding. We hope that one-day there is a cure and if not, a treatment option that doesn’t require so much day-to-day intervention.
Today is World Diabetes Day because today is Fredrick Banting’s birthday. In 1923, he and a colleague discovered how to extract insulin from animals that would be later given to children with T1D. Until this point in time, kids only lived for 30 days after they were diagnosed. Imagine that for a moment. You are told your child is sick and that they will only live for around 30 days. It's unimaginable. So really, when you know that, the estimated 12,000 finger pricks and 6,000 insulin injections Noah has had since diagnosis is a pretty small price to pay.
I have included a small amount of information
acetone smelling breath
autoimmune in nature
body stops producing insulin
can affect anyone but is more common to be diagnosed as a child or teenager
requires insulin via injection
body becomes insulin resistance due to excessive exposure to high sugar foods
more likely in adults
can be managed with diet and exercise and oral medication.
May progress to require insulin
Here's Eliza talking about the symptoms