Five years ago, my youngest son was diagnosed with Type 1 Diabetes. This story is to reflect on what was one of the worst time of our lives is now full of hope, love and laughter.

It was one of the most frightening time in my life, and it’s scary how quick things can change. My son (Liam) was only 13 months old at the time, and a typical happy-go-lucky toddler.

Liam — Pre Diabetes

That week, he was sick with what we thought was a cold and ear infection. After two trips to the doctor and a few days after antibiotics were administered to assist, he still wasn’t improving. By the end of the week, we took him back to the doctor again as he’d become really lethargic and wasn’t eating. He was extremely clingy and we thought he had a bad sore throat because he constantly wanted water.

While at the doctor (who was still unsure of the cause), my wife made a jovial comment that he was “drinking like a diabetic”. As he was having full blood workups done, the doctor ticked the box to have his blood glucose levels tested too. This was about 2pm and we took him home to put him to bed since he was so tired.

A bit after 5pm, we had a call from the doctor who said we need to take him to the emergency department at our local hospital. As he had fought going to sleep for two hours, we were hesitant to wake him. For those not in Australia, the emergency department is commonly used and called upon to treat serious but non-urgent matters after general medical centres have closed for the day. The doctor stressed he needed to get there immediately and if we couldn’t drive him immediately to call an ambulance. The enormity of the situation started to become apparent.

So of course, we promptly took him to the emergency department at our local public hospital. Being a public hospital, unless it’s life threatening you can expect to be triaged and then wait a few hours to be seen by a doctor or nurse. However, when we walked in the door there was a nurse already waiting for us. This was the second big warning sign. We went immediately into a medical bay and another blood glucose reading was taken. It’s at this point we were informed that Liam was now a diabetic.

What we later found out is that the pathologist banged on the doctor’s door until someone would answer as it was just after 5pm when the results were ready. The doctor had then not only informed us, but called the local hospital to ensure they were prepped to deal with it. We have thanked them both many times over since, as even a few more hours could have been deadly.

At this point, not only did we have a very sick child but now two parents (me and my wife) who were now in complete shock. None of our families had a history of diabetes and we were certainly very naive when it came to what it meant. At the time of diagnosis, Liam was in diabetic ketoacidosis (DKA) with ketones over 8 mmol/l and a Blood Glucose Level (BGL) over 26mmol/l (504 mg/dl).

As diabetics will know, this is was extremely serious. As a parent, it was lots of numbers and new terminology galore. An IV was inserted after much struggling to hold a sick 13 month old still to find a vein. Immediately, fluid and insulin were administered and as soon as he was stabilised, he was prepped to be be sent via ambulance to a bigger Intensive Care Unit (ICU) which has trained staff and endocrinologist on duty.

Due to how sick he was and the fact that medical staff needed to travel with him in the ambulance, we weren’t able to go with him. This was yet another round of devastation and shock to deal with. My wife of course was in tears and I was still in shock as we were now separated from our sick son. As any parent will know, this separation knowing how ill he was was horrid to endure.

With the bigger hospital only 40 minutes away, we followed the ambulance all the way and raced up to the ICU to be with him again. With his arms in splints, seriously ill and tubes everywhere it was a horrifying sight. The next few hours they sat us down to explain what diabetes was and what it means and how lucky we were to detect it when we did. It was learning from a firehose.

Liam — After being moved out of ICU

All I can remember from the following 24 hours was not being able to sleep in the hospital chair beside him and the screaming when they wanted to take blood. Despite being so ill, when it came to needles he still had plenty of fight left in him. When his BGL started to stabilise and ketones started to drop, he was moved out of the ICU. He was exhausted and so were we. And, this was only the beginning.

Fast Forward to Today

Now five years on, things are going swimmingly. For anyone reading this and have been recently diagnosed or have a child / sibling diagnosed then it’s a very manageable disease. In the past 5 years, it hasn’t stopped Liam participating in any school events nor sporting aspirations (he currently plays hockey). Once you wrap your head around it all and things stabilise, it’s far, far easier to deal with.

Liam — Happy and healthy as ever

We opted for an insulin pump two days after diagnosis and certainly do not regret the decision one bit. It’s clearly better for diabetics to be able to precisely control basal (background insulin) rates and adjust for different times of the day. It’s also piece of mind for the parents. Once calibrated, you can simply enter the carb amounts in and it will take care of the calculations to deliver the correct amount of insulin.

It’s also important to note that type 1 diabetes is an autoimmune disease. It’s not due to lifestyle, the amount of sugar he ate or anything else within his or our control. It’s not reversible nor is it curable. It just happens and here to stay. As with all autoimmune diseases, the body simply turns on itself and attacks the wrong cells. In the case of type 1 diabetics, it attacks the beta cells within the pancreas which normally produce insulin.

What’s also given us piece of mind is having a Continuous Glucose Monitor (CGM) which measures the BGL every 5 minutes. This has been a godsend when it comes to entrusting others with his care at school and while having sleepovers with family members. While it’s been at considerable expense (about AU$4000 extra a year alone), it was well worth forgoing a few extras for the extra piece of mind.

Thanks to the tireless efforts of the Danii Foundation, we have both sides of government now pledging their support to have this funded by the government. This has not been without considerable work and unfortunately the tragic loss of the foundation’s director’s daughter Danii, who’s life could have been saved had they known about and had access to CGM.

We have no doubt that some nights could have been much worse if it wasn’t for this life saving technology. Despite going to bed stable, Liam has dropped suddenly a number of times with the worst time being as low as 1.8 mmol/l (32.4 mg/dl). Without CGM, we may not have detected this for hours later until his scheduled test time and potentially could have dropped lower.

The health benefits of CGM are clear and measurable as well. Liam’s HbA1c has dropped down to 6.8% and were just around or above 8% before this. Not only does this mean his current well being is better, but the chances of future complications are also much lower.

Nightscout via Pebble

Combined with this, we also use the Nightscout technology (aka CGM in the cloud) which despite being developed by volunteer parents of diabetics is extremely professional and powerful. This liberated data allows access from anywhere in the world with Internet access, and means that my wife and I can remotely monitor as well as be alerted to issues when we’re alway from Liam. The combination of this is absolutely invaluable.

There’s also the research and work by the Juvenile Diabetes Research Foundation (JRDF), which is giving a lot of hope for those dealing with the disease and especially those newly diagnosed. With over 2 billion in research already, there’s real hope that a cure may be found.

For now though, Liam’s just a normal 6 year old who enjoys running around, driving his parents mad and not letting diabetes get in his way. He never complains about his condition, nor let it limit him. In true Liam style, he does what he wants, how he wants and when he wants. His grades are high, he’s competitive yet caring and overall just busy being a typical boy.

We can’t wait for to see what the next 5 years brings.