Relentless - blog for world diabetes day 2020
- 28 November 2020
- Group News
It is 3.00am. I tiptoe into your room and turn your night light on. I turn the pump alarm off – 2.4, that is low! I quickly wash my hands, wet a bit of tissue and get the test kit ready. As I grab your little hand, you stick your middle finger up at me. Even in your sleep, you comply with the wiping, finger pricking and blood testing. As an innocent eight-year-old, you have no idea that the middle finger can be considered a rude gesture. All we know, is that we were advised to stop using your thumbs and index fingers, in case long term complications would cause you to go blind and you need them to read Braille.
The finger prick shows that your blood glucose level is actually 4,2, a safe level. No action needed. I recalibrate your insulin pump, and look at your peaceful, sleeping face. Three and a half years ago, I took you to the GP because you were drinking so much. We were potty training at the time and earning stickers could be your motivation during the day, but you would also wake up in the night and ask for cups of water. It just did not sit right with me. Luckily, the doctor was on it and performed a finger prick. Within an hour, we were in the diabetes centre where the paediatrician gave us your diagnosis of ‘type 1 diabetes mellitus’. You also received your first shot of insulin.
Before my three-year-old was diagnosed, I knew nothing about diabetes. I probably had a vague notion that it had to do with eating too much sugar, a widely spread misconception I know now. Most people know about type 2 diabetes, which makes up 90% of all diabetes in the UK and is related to an unhealthy lifestyle. Both types of diabetes have a genetic component, but the exact cause of type 1 diabetes is still unknown. Type 1 diabetes is an autoimmune condition, caused by the body attacking its own pancreas with antibodies. In people with type 1 diabetes, the damaged pancreas cannot make insulin anymore. When you have type 1 diabetes you need to test your blood sugar levels frequently, plan out your meals and exercise carefully, and take insulin.
Leaving the house, we always need to carry a glucose test kit, a hypo treatment, ketone test kit, insulin pen, mobile scales and a mobile phone with carbohydrate app and calculator. And of course, a tube of glucose gel in case he is still conscious but unable to consume, or an emergency glucagon injection kit in case he passes out from a low. Because if his blood glucose levels go too low, he might end up in a coma. Too high can also cause a coma, and if it is untreated for long periods of time it can damage the vessels that supply blood to vital organs. This, in turn, can increase the risk of heart disease and stroke, kidney disease, vision problems, and nerve problems. Every component of his meal has to be weighed, the amount of carbohydrates calculated and put into the pump. With all the factors influencing blood sugar levels, you can see that managing type 1 diabetes is a tightrope balancing act.
When first diagnosed, we were giving him seven pen injections every day. Imagine: a little boy, fighting, screaming, biting, in the end hung over the knee to inject him with the insulin that he needs to be able to eat. Seven times a day. No grace, no exceptions, we have to keep him safe. The constant worry: Is he high? Is he low? Should he eat something? Should he exercise to get the insulin moving? Did we make the right decision?
Now, he is lucky to have a funded insulin pump combined with continuous glucose monitoring (CGM). CGM is a sensor with transmitter that is inserted in his body, just like the cannula that supplies the insulin from the pump. For him, this means that every other day we have to change the cannula, and the sensor every week. Big needles, pain, fear and struggles. And the relief for all of us when it is done. The CGM system alarms when he runs high, or low. It also stops his background insulin when it predicts a low and even prevents it 80% of the time. A blessing in the daily management of type 1 diabetes.
At the same time, he does not get invited for play dates and parties. His teachers are obliged by law to include him, but are terrified because of the unpredictability of his blood sugars and knowing the right way to act. Did I already mention there are 42 factors influencing his blood sugars? There are a few that we can manage (e.g. food, insulin, exercise), but more that we are not aware of, nor can control (think: hormones, illness, stress). He has never been separated from his parents for longer than a few hours, simply because no one dares to take on the responsibility. How will this affect his development?
Thinking back to that first night back at home after diagnosis: all the lights on, instructions at hand, shaking while trying to insert the test strip, trying to scoop up the drop of blood (only later I learnt to use it as a straw and suck it up), the panic of a high reading... It is terrifying. You need to make decisions that can potentially kill a little boy.
Yes, let that sink in. We are not medical professionals, not medically trained, and still, several times a day, we have to make the right decision to keep him alive. A lot of people say: I don’t know how you can do it, I could never stick a needle in my child. But there is no choice. If we don’t decide, he will die too.
Now, 9,000 finger pricks later I can do them in the dark, with my eyes shut if I had to. We, his parents, have become experts on his diabetes. When he gets admitted to hospital (which is pretty much a given with any stomach bug or other illness that stops him eating), we are more knowledgeable on the subject then the medical staff.
Recently, a Dutch man living with type 1 diabetes, invented an insulin pump system that measures and distributes both insulin and glucagon. Robin Koops was tired of waiting for pharmaceutical companies to work out their patents and procedures. He started his own company Inreda and developed the AP (Artificial Pancreas). Robin trialled it on himself initially, and managed to get his diabetes under control. A life without ‘hypo’s’ (hypoglycaemia, lows) and ‘hyper’s’ (hyperglycaemia, highs), a life without worries. Robin says that the AP has given him back his freedom. For the first time in his life, he does not have to think about eating, exercising and blood sugars. Inreda has recently obtained a CE certification and started a project trialling their AP with one hundred adults. They say there will be a cure for type 1 diabetes in my son’s lifetime, but in the shorter term we can only applaud this initiative that swerved bureaucracy and has no financial interests in the outcome.
When I asked my fellow type 1 parents in a closed Facebook Group to finish the sentence ‘Type 1 Diabetes is... ‘ I received hundreds of answers. Some of them made me laugh, some of them made me cry, but all of them made me feel that I was not doing this alone. There are other people out there who understand what it is like. The word that stood out most from the word cloud, was ‘relentless’. Type 1 diabetes is relentless, it is unceasingly intense. And my child deals with it, every day. He is persevering, persistent, and tenacious and I am extremely proud of him. For you, my love, I will be relentless too.
By Karin Venema
The most personal story that I have written so far. Today is #worlddiabetesday and November is #diabetesawarenessmonth. My 8-year old son has type 1 diabetes, he was diagnosed 4.5 years ago. Managing #type1diabetes is relentless.