Type 1 diabetes, also known as insulin-dependent diabetes, is often diagnosed in childhood. Sometimes in babies as young as a few months old and frequently in severe hyperglycemic episodes.
Between regular insulin injections, scheduled meals and rigorous monitoring, the whole day-to-day life of the young patient and his or her family is disrupted. For life. Food, sleep, school, adolescence… How do these children grow up with this disease? How can parents best support them on a daily basis?
“A shock.” The word comes up consistently in the mouths of parents of young diabetics. Because the disease has surprised them all. By the speed at which it first appeared, by the fact that very often there is no other case in the family. But above all because they could not imagine what this disease really meant in their daily lives. Neither for them nor for their child.
The hardest thing for Véronique, mother of a little Benjamin, who has been diabetic since he was 7 years old: seeing him realize “that he will never again be able to eat what he wants, when he wants. ». For Mathilde and her son Matteo, whose diabetes was diagnosed just a few months ago, also at the age of 7, it’s the very strict schedules that have to be followed meticulously, with no room for manoeuvre. “I have to wake him up every morning at 7 a.m. to give him an insulin injection. And he has to have breakfast right afterwards. Whether it’s during the week or on the weekend, whether he has to go to school afterwards or whether it’s holiday time. He quickly realized that he was no longer a fat morning person.
Parents on the front line
t’s easy for children and parents alike to accept this pervasive disease on a daily basis. However, their total and rapid involvement is indispensable. As soon as they are diagnosed, the youngest children receive a small illustrated guide explaining the disease they suffer from and the rules they need to follow to stay in shape. Parents also have their own, with courses for all to learn how to carry out checks, injections and emergency procedures. All in all, a colossal amount of information to be assimilated and put into practice very quickly. The return home after the hospital was hard,” says Mathilde. I took a week’s leave because I needed time to read the information on the syringes and the products, to weigh the food and to prepare the meals properly. The first injections were hard. We are afraid of doing wrong and afraid of hurting our child. “Véronique also acknowledges that the injection “is the moment when we realize how much we have our child’s life in our hands. Literally. »
Patients who are more difficult to balance
As the years go by, parents of young diabetics face another challenge: adapting to their child’s age to gradually empower them and pass the baton on to them. The care of a diabetic child necessarily depends on his or her age,” explains Professor Patrick Vexiau, head of the diabetology department at Saint Louis Hospital in Paris and general secretary of the French Diabetes Association (AFD). When the child is a few months old and up to 8 or 10 years old, all the care will be the responsibility of the parents. When they grow up, the parents will have to empower their child, in particular for injections and daily check-ups. “This is an essential but complicated stage, where parents will have to learn to delegate vital gestures and to trust.
Regardless of age, “the number one objective is to ensure that the diabetic child lives a near-normal young life with maximum safety, i.e. with a balanced and quality treatment,” summarizes the diabetologist. The problem? In the case of diabetes, the success of the treatment depends above all on the subject’s adherence. And in this respect, children are not patients like any other. You can’t ask a 6- or 8-year-old child to project himself into the future and restrict himself perpetually to protect his future,” continues Patrick Vexiau. He is incapable of doing so. If he finds a good cake, he won’t eat a piece but two or three. Blood sugar level or not. The role of those around him is to be more vigilant and to catch up on possible excesses. That is what is important. »
A more delicate management
This greater flexibility, which is necessary for the well-being of children, comes at a price: it makes rebalancing blood sugar levels more complicated than in adults. It’s certainly more difficult to stabilize diabetes in younger children,” confirms the diabetologist. This is because it is almost impossible to force a 6- or 8-year-old child to live a regular enough life to stabilize his or her diabetes. But also because glycemic variations and their manifestations are more important in children. Hypoglycemia in particular leads to more frequent loss of consciousness. Impressive, they naturally frighten parents. “Parents are therefore inclined to multiply the number of controls. Even at night, which is bound to disrupt the sleep of the whole family for a long time. It’s true, hypoglycemia is more frequent at night,” explains the diabetologist. Parents therefore often feel the need to reassure themselves. But if parents do a lot of monitoring, it is also because it allows them to give more freedom and flexibility to their child. »
Because between a very controlled diet, regular check-ups and ultra-precise insulin injections, diabetes requires a quasi-military organization that does not mix well with the carefree childhood. However, it is this regularity and healthy lifestyle that are the keys to treatment. The only way to ensure that blood glucose levels vary as little as possible and that young patients avoid short-term discomfort and the appearance of long-term complications is to keep them from developing diabetes.
For the parents, the difficulty of accompanying a diabetic child is thus there, in this in-between time. On the one hand, there is the fear of the disease, and on the other, the desire not to frustrate these children, who often grow up quickly because of the disease. Normally, we have to do six check-ups a day,” says Benjamin’s mother, who is nine years old today. But we often do more. I’ve always preferred dialogue, so when he tells me ‘you know, I ate that too’, I refuse to overreact. I tell him, ‘Well, we’ll see what we can do with the dextro (blood sugar control, editor’s note) and we’ll get back to normal if we have to’. I don’t want a little pleasure to become a fault in his eyes, a stupidity. He needs to be able to enjoy himself again. »
The pain of not being “just another kid.”
A taste of class? A birthday party? With a diabetic kid, everything gets complicated. Mathilde prefers to explain in advance to the parents who invite her son what he can or cannot eat and then trust Mattéo. But she acknowledges that he is always “very reasonable. Probably too much, in fact. “Véronique injects her son with insulin before the snack and brings the controls closer together. For both of them, however, there’s no question of entrusting their child any longer, whether it’s for a night or a weekend. “I can’t ask her boyfriend’s mother to take care of the evening injection, the controls, to expose him to the risk of hypoglycemia…” is how Véronique justifies herself. “So the pyjamas are gone, it’s still at home! »
The school, too, has a lot of facilities to put in place. And in this respect, it all depends on the school: some have nurses all week, others do not. Some canteens ask parents to prepare their diabetic children’s meals themselves, while others offer families the opportunity to select menu items a week in advance. But for everyone, it is especially the school outings that are the most important: “This is very reassuring for the teachers. And me too, I confess, I prefer to be there. Just in case. “In Matteo’s class, two other children suffer from type 1 diabetes. So the school was already prepared for diabetes, so we developed a protocol very easily. Above all, it’s good for my son: with his friends, they have the same constraints and can discuss it among themselves. In the end, he doesn’t feel too different from the others. »
For Patrick Vexiau, allowing the child to meet other young diabetics is crucial. “At AFD we organize special summer camps. They don’t necessarily learn more about their disease, but they meet other young people like them there. They can exchange and realize that they are not alone, that diabetes is not necessarily an obstacle and that they can have a near-normal life. »
After having sinned for a long time through overcautiousness, Véronique admits that her son now has the life of a little boy of his own age. “In the beginning, we were afraid of everything. Even getting out of the house became a trial; we didn’t dare to go away. We thought that nothing was allowed any more, that we would never again have the right to holidays by the sea or in the mountains. Today, almost 3 years later, we have realized that this is still possible. Benjamin does sports, eats pizza from time to time and yes, we can go on holiday. The condition is that you always have to plan everything: the material for the injections and the checks, the small snacks, etc. It’s a whole logistics but it has become a reflex. »
Managing mood swings
With diabetes, it’s a page that turns to the “life before”. A life that immediately appears simpler and lighter in the eyes of the parents but especially of the sick children themselves. Mathilde remembers the violence of her son’s reaction when he returned home. “He shouted that I couldn’t understand. That it wasn’t me who was sick. He expressed himself with a violence that I didn’t know him, he who was such a calm, easy-going child… “Véronique also had to learn how to cope with her son’s crises, especially during episodes of hypoglycemia, which sometimes lead to nervousness and aggression. “Even though we know that everything is due to the disease, some words hurt. Because you do a lot for them but you can’t cure them.
Other parents also face a major pitfall when their children use their diabetes… to get what they want. Attempts at manipulation that all children indulge in, but which can become especially serious with diabetes. The classic case is when a child blackmails his parents because he doesn’t like the food he’s being served,” says Patrick Vexiau. He swears he won’t eat it. But since he had an insulin shot before the meal, the risk of hypoglycemia is high. Which naturally causes parents to panic. Today, thanks to the evolution of treatments and the appearance of rapid insulin, if the child is difficult, it is possible to give him injections after meals. This avoids blackmail, which is not negligible in terms of calming family life. »
Adolescence, a difficult period
Later, adolescence marks a new turning point in the life of the young diabetic and his parents. At stake is his total empowerment, at a time when he is more likely to reject all constraints altogether. On the front line: those of the disease and the treatments that make it felt, no doubt even more cruelly at this age, different from others. It’s a specific period psychologically,” says Patrick Vexiau. Because teenagers rebel against everything: their parents, society, their diabetes of course. The only message that it is then crucial to get across to them is that they must continue to take responsibility for their diabetes at all costs, so that they don’t give up monitoring. “Because it is the periods without monitoring and treatment that are the most dangerous for his health. But how can we make him responsible without pointing the finger at him? The way a teenager lives with diabetes depends a lot on the people around him,” warns the diabetologist. This is a time when parents must learn not to be too present, so that diabetes is not perceived as an obstacle to the teenager’s demand for independence and legitimate emancipation. In a word, parents must agree to accompany without brooding. Not to overprotect while remaining present so that the young person, suddenly finding himself too free, does not feel lost. »
The balance is difficult to find, especially for mothers who have often been very involved with the child and are afraid to “cut the cord”. The teenage crisis is even more difficult to manage when you are diabetic and on insulin,” says Patrick Vexiau. You have to remember that these are teenagers who arrive at the age of 13 or 14 without ever having slept alone outside the home. Later, around the age of 16 or 18, it’s late nights out, nightclubs and alcohol that don’t go well with diabetes…”. Some teenagers don’t feel good about themselves, so they don’t pick up the phone. But without treatment, they get worse. It’s a vicious cycle. “Today, we see 20-22 year olds with prescriptions that are more about survival than basic diabetes treatment,” says the diabetologist. These young people often come from underprivileged social backgrounds and have not had a sufficiently stable and supportive environment to accompany them in their first steps as adults.
Taking care of family balance
From childhood to adolescence, the whole life of a family is turned upside down by diabetes. And sometimes unbalanced. The risk? That all the attention is focused on the sick child and that all other worries are pushed into the background, including marital problems that can eventually make family life even more fragile. For Patrick Vexiau, these situations justify recourse to “outside psychological help. Indeed, one must be careful about the risks of family breakdowns and imbalances. If the mother is very close to the child, it is necessary to ensure that she does not abandon her other children or her husband. To avoid this leading to a real break-up. “This is a problem experienced by many other households that are not affected by the disease, but in this case it can be particularly devastating for the young diabetic. He will tend to believe that the conflict between his parents is happening because of him, because of his disease,” says the diabetologist. This will cast an additional shadow over his diabetes: not only is it poisoning his life, but it is poisoning his parents’ lives as well! “The risk? That he will eventually blame diabetes for all the family’s ills. And that he will reject the disease even more violently, even though he must assume it no matter what happens, because it will be with him for the rest of his life.