My son, Mason, was diagnosed with type one diabetes when he was 19.5 months old, before he was verbal. Managing diabetes in a toddler is a full time job in itself ! As parents/caregivers, we are always watching and actively managing blood sugars 24/7/365. At the time, he was unable to communicate how he felt, and his eating habits and activity was erratic outside of school (where things are more regimented) – those living with the condition knows how challenging managing T1D can be in itself, and we have always felt that doing the same in a toddler is like managing diabetes in EXTRA HARD MODE!
Our goal for Mason was always to ensure that he enjoys his childhood just like any other normal child would. It was important to us that he did not feel different to his friends, and that he grew up thinking he could achieve whatever he wanted to despite the challenges of living with T1D. But we also needed to ensure that he was safe, and that his glycaemic control was optimal to minimise complications in the future, given that he was diagnosed so young. The use of diabetes technology to manage his blood sugars was thus not only convenient, but MEDICALLY ESSENTIAL.
Mason started out very early on with the use of Freestyle Libre right out of hospital post diagnosis to minimise the number of fingerpricks needed, and when the Dexcom G6 CGM became available a few months later, we switched over immediately. It is already inevitable these young warriors have to endure multiple blood draws per year during reviews, and it was important to us that we minimise the discomfort of the day to day injections/pricks required. The switch to CGM allowed us to monitor Mason’s blood sugar levels remotely while he was in school or with other caregivers. The CGM also aided our learning curve on how food and insulin impacts his blood sugars, and empowered us to adjust his insulin doses according to his needs (e.g. growth spurts, illness, activity levels). We were also able to utilise third party apps (linked to Dexcom data) for blood glucose display on our smart watches, mobile phones, as well as a blood sugar alarm we use at night called the Sugar Pixel.
As part of the learning journey, we met with some challenges with CGM use in the early days. Firstly, the size of the CGM was quite large for a small child – and it was challenging to find adequate “real estate” to rotate at each sensor change! These days, CGMs are smaller, have shorter warm up times, and are less painful during application – but not all of these are accessible to us here in Singapore. Mason also suffers from chronic eczema and sensitive skin – and we soon realised he was allergic to the adhesives of the CGMs. These resulted in itchy and painful rashes which also reduced longevity of the CGMs due to inflammation at the insertion sites. Our humid climate also worsened the extent of inflammation and was a challenge to keep CGMs on with an active child! We experimented over a four-month period with multiple products including skin barrier sprays, underlays and bandages (vetwrap) until we landed on a protocol that allowed us to continue using the CGMs without adverse skin reactions at each sensor change! This protocol is now widely shared amongst the T1D community and healthcare professionals to help those facing the same issues.
During the early days of diagnosis, our endocrinology team at KKH also spoke to us about switching Mason to an insulin pump which we were very keen to explore. Like most, we started with multiple daily injections (MDI), and the minimum doses that can be delivered for long acting insulin was 1 unit, whereas for rapid acting insulin it was 0.5 units. For a young child, this difference of 1 unit and half unit respectively was often too much, and we were often needing to “feed the insulin” (we needed to fit in extra carbs to prevent hypoglycacemia). Switching to an insulin pump allowed us to deliver precise doses of insulin (as little as 0.025u changes in basal insulin rates, and 0.1u for meal boluses!), and allowed more adaptability to different situations during growth spurts, illness or activity – by adding or taking away insulin as necessary. Our initial concerns included the costs of insulin pump therapy, and the inconvenience of wearing tubed pumps, since tubeless pumps were not available here. And at the other end of discussion is whether Mason would be willing to, or be able to adapt to life with a pump!
We approached this methodically – starting with getting him used to wearing a pump belt and sleeping with one, then carrying a “dummy pump” to get used to the weight of the pump. We also did a trial of the infusion sites to monitor for adhesive reactions, and thankfully there was none. During this trial, we put the infusion sets to the test – exposing him to bouncy castles, water play, playgrounds to see if it could withstand the rough and tumble that comes with toddlerhood! Mason transitioned seamlessly to life with a pump and we felt more freedom with dosing him for foods, and managing daily activities. The concerns about being tethered to a pump quickly dissipated as we were able to disconnect him from the pump during activities like swimming or sand play, and reconnect him to deliver insulin doses as needed!
In many countries, automated insulin delivery systems (or hybrid closed loop systems) have become standard of care for management of T1D in children and is a tool that increases quality of life (and sleep!) of patients and parents alike. Unfortunately, accessibility to these technology remains an issue for T1D kids in Singapore. Due to the low number of patients and demand, the supply of AID systems here is not a priority for many of these companies. With telehealth, this gap is now closing, but it does not defray the high cost of such technology without sufficient subsidies or coverage by health insurances. The cost of pumps could range anywhere between $6000 – $11,000, on top of ongoing consumables necessary!
It is our hope as caregivers that more aid can be extended so patients and parents can choose what is best for their/their children’s health. Ultimately, what parents hope for (apart from a cure) for their T1D child is NORMALITY, to spend as little TIME thinking about diabetes as possible (financially and medically), and to minimise COMPLICATIONS in the long run.