If the child suffers from type 1 diabetes, everything changes for families. Now it’s time to measure sugar levels and attend training courses. Nevertheless, normality should return soon, experts advise.
The first signs seem banal: the child drinks a lot and often has to go to the toilet at night. It looks increasingly exhausted and tired and loses weight. All of this could speak for type 1 diabetes.
Martin Holder knows that drinking too much is not so noticeable, especially in summer. He heads the training and treatment facility for children and adolescents with type 1 diabetes at the Stuttgart Clinic. “Often the parents are still happy about it.”
The symptoms are often recognized too late, as Prof. Andreas Neu explains. This leads to a metabolic derailment. The blood sugar rises considerably, acids are produced that over-acidify the body. “Cells and organs are paralyzed or incapable of functioning,” explains the Vice President of the German Diabetes Society.
Children’s clinic as the first station
The diagnosis is usually made very quickly, a blood or urine test brings clarity. Families, however, are hit hard by the chronic illness. “Life changes suddenly,” says Holder. As a rule, the children dealt with it better, explains Bernhard Kulzer, a specialist psychologist for diabetes.
After the diagnosis, it is important to be admitted to a children’s clinic quickly to stop the insulin supply. The first days are to normalize the metabolism.
Only then does the training of parents and child begin. How do I measure my blood sugar? What do I have to pay attention to when eating and how do I do sports in the future? All of these questions are answered in the process. This usually means a 14-day inpatient stay, says Holder. “The aim is that the children and their families can continue to live as normally as possible.”
Don’t fall into the debt trap
The initial phase is crucial for dealing with the disease, explains Kulzer. How do the parents overcome this shock together, and how do they integrate the disease into the family system? “Most of the time, research is carried out to see whether there are similar cases in the family and whether it is hereditary.”
Despite intensive research, it is not yet certain how this type of diabetes develops. Certain structures of the immune system are definitely hereditary, reports Kulzer, but there are many people who do not develop diabetes. That is precisely why parents need to be informed and supported in order not to even ask the question of guilt.
“At some point, however, everyone begins to struggle with the disease,” says Holder. For this reason, ongoing psychosocial support is often part of the program in the clinics.
Type 1 diabetes is usually treated with insulin injections or an insulin pump. If the child is supplied with a pump, he or she has to change the catheter every two to three days, depending on age or with the help of the parents.
“At the beginning the extra effort is of course still great and is often perceived as a burden,” explains Neu. However, measuring sugar, estimating carbohydrates and injections quickly become routine.
Normality is crucial in everyday life
Kulzer’s most important tip is therefore: normality. “The fact that the child becomes chronically ill means that more attention is paid to him.” His team therefore always advises taking it slow. “The technology is now very good, especially at the beginning, little can happen,” says Kulzer.
He recommends parents to deal openly with the disease and to let the child deal with it openly. “This is the best chance that everything will normalize.”
New pleads for a good balance between control, surveillance and restriction on the one hand and strengthening personal responsibility and freedom on the other. “Parents should trust that the child can achieve something themselves.”
The experts know that siblings are often neglected. “The biggest mistake would be to wrap the sick child in cotton or to pay too much attention to the disease,” warns Kulzer. Holder recommends consciously involving siblings, maybe even handing over responsibility to them depending on their age or doing something exclusively with them.
Support group for sharing
According to the experts, it is important to extend the training to include the family. For example, the supervisors in the daycare center, kindergarten or teacher are informed in order to avoid misunderstandings. “Children think that it is contagious and then no longer want to sit next to the sick child or play with him,” says Neu.
Teachers should be prepared especially for school trips. New at the University Clinic for Pediatric and Adolescent Medicine in Tübingen offers to train good friends of the child beforehand. “We instruct them about the signs of a possible metabolic derailment so that they know when to get help,” explains the professor.
The experts advise parents to find a self-help group to exchange ideas and give tips. This is also important for the children to meet like-minded people and to realize that they are not alone. In addition, role models such as competitive athletes with diabetes 1 can help to better accept the disease.