Julianne’s story - a story about our Board Member Julianne Cuthbert
Reuben was diagnosed with Type 1 Diabetes when he was 9 yrs old in 2017. He was staying with his grandparents over the school holidays and I remember my mum saying Reuben was drinking a lot and going to the toilet a lot. I had always associated these symptoms with diabetes so I thought I would just keep an eye on him and hoped it didn’t get worse.
Over the next few weeks we began to see Reuben’s symptoms get gradually worse. I remember getting up in the middle of the night and seeing him in the kitchen sculling large glasses of water, and going to the toilet many times a night. During the day he was his normal active self, attending school and playing sport. He was eating a lot and was looking like he was a bit thinner but I thought he had just had a growth spurt. I knew I needed to take him to the GP to get tested, but kept putting it off (I was in denial!) When we did eventually see the GP she sent him for a fasting blood test the next morning- I wish I had pushed for a finger prick test at the time instead of waiting another night. In hindsight I hope I would have done this if Reuben had been unwell. Reubenʼs fasting blood sugar level came back at 19mmol. The GP called us and gave us the diagnosis and bought us in to the surgery late on a Friday evening. Reubenʼs ketones were low at this time (0.4) so we went home for the night and presented to hospital the next morning to commence insulin. Needless to say none of us got much sleep that night and we have definitely had many disrupted nights since.
It has been a rollercoaster ride since that day – some days you feel like you’ve got everything under control (rarely!) while other times questioning your decisions and often trying to find explanations for high or low BGLs. In my role as a paediatric Dietitian I have been involved in educating many families with children newly diagnosed with Diabetes, however I found there was still so much I needed to learn about all the other areas of diabetes management and this is certainly an ongoing process.
Reuben was also diagnosed with Coeliac disease 6 months later – his Coeliac antibodies were significantly raised on screening bloods and he became quite symptomatic prior to his gastroscope and subsequent diagnosis. This diagnosis added a whole new set of challenges, although thanks to ongoing education and demand for gluten free products it is now much easier to find a gluten free alternative for foods previously enjoyed.
Managing diabetes in a child can be incredibly frustrating, with the many factors affecting blood glucose levels needing to be taken into account, multiple times a day and night. We have been very lucky to have great support from our team of diabetes educators, paediatricians, social work, family and friends but I’m also thankful that I have been able to meet with many other parents of kids with Diabetes through the Type 1 foundation.
I went to my first mum’s dinner about three months after Reuben’s diagnosis and certainly felt connected to other mum’s facing the same issues with their children but I also heard some positive stories and was reassured that it does get easier!
