Of course I can snack!

Her friend's voice sounds worried: «I don't think you're allowed to eat that, you have diabetes,» Mia says to Leonie as she hands out her birthday cake in class. «Yes, of course I can eat cake, as much as I want,» replies Leonie, «I just need an insulin injection first.»

«Unfortunately, young diabetes type 1 patients and their parents very often have to struggle with such prejudices,» complains Manuela Göldi, herself the mother of a child with type 1 diabetes and head of the Zurich regional group of the Swiss Diabetes Kids self-help association. «Many people still confuse type 1 diabetes with the much more common type 2 diabetes, which is also known as adult-onset diabetes and occurs mainly in adults.»

The body attacks itself

Type 1 diabetes in children has nothing at all to do with poor eating habits or obesity, as is the case with type 2 diabetes. «Type 1 diabetes is an autoimmune disease,» explains Stefanie Wildi-Runge, a paediatrician in Dübendorf ZH who specialises in paediatric endocrinology and diabetology. «The body's immune system attacks its own insulin-producing cells and destroys them.» If the body therefore has too little or no insulin available, it lacks the substance to transport the carbohydrates from food into the cells. «This creates an imbalance in which the blood sugar level continues to rise on the one hand, while the body cells - despite an oversupply - hardly receive any energy,» says Wildi-Runge.

If this is not counteracted in time, it can lead not only to hyperglycaemia but also to ketoacidosis, an over-acidification of the blood, which in the worst case can lead to a life-threatening diabetic coma.
The cause of this autoimmune disease is still unclear. «Seasonal and regional clusters have been observed,» says the paediatric diabetologist. Genetics also appear to play a certain role. For example, the risk of type 1 diabetes is increased if one parent (3 to 5 per cent) or sibling (5 to 10 per cent) has type 1 diabetes."

The causes lie in the dark

However, a clear cause for the autoimmune disease has not yet been identified. «Affected children or their parents are therefore not to blame for the disease and cannot influence or even prevent it,» assures Stefanie Wildi-Runge. According to rough estimates, around 3,000 children and adolescents in Switzerland are currently affected by type 1 diabetes.

«There are around 220 to 250 new diagnoses every year,» says the diabetes expert. A typical sign of the onset of type 1 diabetes is very severe thirst. «The children drink conspicuously large amounts of fluid, have to go to the toilet frequently and some suddenly wet themselves again at night, even though they were already dry,» says the paediatric diabetologist. Unwanted weight loss can also occur because the body breaks down fat and muscle cells to produce energy. In addition, affected children often feel tired and listless and have difficulty concentrating. «If type 1 diabetes is suspected, the first point of contact is the paediatrician,» says Wildi-Runge. «They can carry out a blood glucose test and refer any abnormalities to a specialist for further clarification.»

Type 1 diabetes is not curable

If type 1 diabetes is diagnosed, the affected children must be treated with insulin for the rest of their lives. «Unfortunately, a cure is still not possible today,» regrets the paediatric diabetologist. As a rule, a long-acting so-called basal insulin is injected once or twice a day to fulfil the energy requirements of the body's basal metabolic rate. In addition, a short-acting insulin must be administered with every meal so that the body can utilise the carbohydrates from the food. With this form of insulin therapy, children are basically allowed to eat and drink whatever they want.

Parents should inform the school of their child's diabetes on their own initiative

Before eating each meal, however, you must always determine the carbohydrate content of the food and measure the current blood glucose level. This is the only way to calculate the amount of insulin required. «Of course, this is a huge challenge for the affected children and their families at first,» says Wildi-Runge. Of course, there is help in the form of practical training and nutritional counselling. In certain cases, it is also possible to measure blood glucose levels and administer insulin using modern insulin pump systems, but the new situation still turns the everyday lives of those affected completely upside down at first.

Suddenly everything is different

What should I cook? How do I calculate the carbohydrates? What happens if I give too much or too little insulin? «At the beginning, you have questions and questions because everything is new and you're terribly afraid of doing something wrong,» Manuela Göldi knows from her own experience. «It usually settles in at some point and becomes part of everyday life.» What remains, however, is the fear of letting go, of trusting that other carers can also take good care of the child or that the child can also manage his or her own insulin management well - especially during the school years.

«First of all, you need to know that children and young people with type 1 diabetes are basically allowed to do everything that children without diabetes are allowed to do,» emphasises Göldi. «This means that children with type 1 diabetes can attend a normal school and are entitled to do so.» As parents cannot be present during school hours, it should go without saying that they should inform the school about their child's diabetes.

«From the first to the ninth grade, parents are even obliged to do so due to their duty to cooperate in school operations,» emphasises Caroline Brugger Schmidt, legal advisor and responsible for children, young people and parents at the patient organisation Diabetes Switzerland. But even later on, it makes a lot of sense for parents and school to keep in constant dialogue. «Teachers also have a certain duty to help the affected child,» explains Brugger Schmidt. «This means that parents can expect the teacher to remind the child to measure their blood glucose and administer insulin, for example, and also to help check the blood glucose values and insulin units previously given by the parents.»

However, administering an insulin dose is no longer part of the duty to co-operate and parents cannot demand this from the teacher. «If the child is not yet able to inject themselves reliably, parents can switch to carbohydrate-free snacks for snack time, for example, because then insulin doesn't have to be given again until lunch,» advises Brugger. Otherwise, there should always be a contact person for the school or teachers who knows what to do in an emergency and can also take action. «All in all, I think the most important thing is for parents to allay the teachers' fears,» advises Brugger Schmidt. «Certain blood sugar fluctuations are normal and serious complications are extremely rare these days.» With a little support and tolerance on both sides, children with type 1 diabetes can have a completely normal childhood, adolescence and school years.