Juvenile diabetes, an increasing problem

The number of children in the world confronted with the incurable disease diabetes is increasing sharply. Besides asthma, diabetes is the most common chronic disease among children. Every twenty-five years, the number of children with diabetes doubles. The increase in diabetes among very young children is striking. Diabetes researchers, associations and stakeholders are ringing the alarm worldwide. What does it mean for a child to suddenly have to inject themselves with insulin for life?

The first shock

The moment the diagnosis is made clear and the parents and the child have received the first blow, there is always a period of crisis in the family. Family members go through several distinct phases, and feelings of fear, confusion, shock, and denial are common. The child soon feels physically better as a result of direct treatment with insulin, but suddenly has to lead a disciplined life, measure blood sugar several times a day by means of finger pricks, and inject insulin several times a day. This is very drastic for the child and the parents, and is initially a heavy burden on the family.

Viruses are said to play a role in the development of diabetes in children. The diabetes patient's immune system would have been running at full speed the moment a virus had to be fought. There would even have been a kind of overreaction that caused the immune system to also target the own islands of Langerhans in the pancreas, with the result that the necessary insulin production is stopped. Result: type 1 diabetes, a disease with fatal outcome unless from that moment onward insulin is introduced into the body from outside to keep the blood sugar level in the blood at acceptable levels. This form is present in the vast majority of children with diabetes. Only a very small percentage is type 2, a type in which the pancreas still produces some insulin, although too little. This form can occur in children who are overweight.

These children do not understand anything about diabetes and experience everything as threatening. Babies cry and scream at the injections and this is very difficult for the parents. The children cannot indicate exactly what they are feeling and that is why the parents should keep an eye on the baby constantly. The bond between parent and baby is disrupted every time the syringe is put on the table, and this at a time when building safety for the baby is a priority. The need for contact with fellow sufferers is therefore very great in this group, and the support function of care providers in this group is also very important.

This phase is even more difficult if necessary. The child develops the sense of self and makes it clear what he does and does not want, with the result that there is a strong resistance against the diabetes treatment. For example, toddlers no longer want to measure, prick or eat. The child sees the injection as a punishment and the parents are the ones who punish the child. Toddlers link the development of their diabetes to completely different events, for example: 'I got diabetes because I lost my ball'. It is best to let the child participate in small decisions about the diabetes, for example to let the child choose where to inject, or to let the child choose from types of spreads. A reward system also works: for each injection, the child can choose a sticker that is placed in a notebook or booklet. When that booklet is full, the child can choose a present from the toy store. In this way the parents link the diabetes with something positive that will make the child cooperate.

During this period it is important to find out what the child has understood from the pediatrician and parents about his diabetes. These children are often astonishingly good at displaying the acquired knowledge, but are not yet fully capable of placing the acquired knowledge in their own body. This affects the child's behavior. For example, it continues to play with very low blood glucose in the blood and forgets to eat. Little by little it must become clear what you can expect from the child, knowledge about the disease must be provided in doses and the parents must remain constantly alert to whether the knowledge is actually being put into practice. Teachers should also be instructed on what to do with hypos, the treats in class when it is someone's birthday, and other details. The same applies to any other situation where the child is temporarily in the care of others. This is stressful for the parents to repeatedly explain the disease and to see their child as someone with instructions for use, but it also gives peace of mind when the child is actually in good hands.

Getting diabetes in this age stage is very poignant. The urge for independence is usually so great that the confrontation of being dependent on care providers and parents is experienced as a threat. A child in this category asks itself questions about the future and looks for its own identity. They can manage their diabetes in a disciplined way, but can also enter a phase where, just like with toddlers and pre-schoolers, they no longer want to prick and measure and make a mess of their diabetes regulation. This as opposition to the parents and the doctors, and especially not to be labeled as 'different' by their friends and classmates. From the child's reasoning, pretending that the diabetes isn't there is a way to stay out of tune, but the child gets caught up in the hospital check-ups and many difficulties follow. In order to prevent this, it is important for the child to have a clear awareness that treatment is vital even before puberty sets in. This also to reduce the risk of kidney and eye complications at a younger age.

In the Netherlands there are approximately 12,000 children and young adults aged up to 20 years with diabetes (DVN, 2017). Every year the group of children with diabetes grows. Various reports show that the largest increase takes place in the 0 to 5 year group, but it is not yet known exactly why this is. In addition to asthma, the chances of developing type 1 diabetes during childhood are higher than almost any other serious chronic illness you can get at a young age. Almost all children with diabetes in the Netherlands have type 1: an autoimmune disease in which the body's defense system itself has destroyed the insulin-producing cells in the pancreas.

Diabetes is on the rise all over the world. This concerns 422 million people worldwide (WHO Global report 2016) and in the Netherlands more than 1.2 million people (2019). A lot of this doesn't even know he has it. This concerns dormant type 2 diabetes. Nine percent (2015) of diabetes cases in the Netherlands have type 1 and have to inject insulin daily. If the current trend continues and nothing is done, the growth in the number of cases will increase further. The solutions for diabetes are not yet in sight, but research is being done all over the world. Transplantation of the islets of Langerhans, the insulin producing cells, is sometimes used but is unsuitable for large groups of patients. The same goes for pancreas transplants. Vaccinating children at a young age is an option to possibly combat juvenile diabetes in the future, but is still under study. Work is underway on the possibility of inhibiting diabetes in the early stages of risk groups.