"You fall the world," "You collapse," "You stay in shock because you think what they are telling you is not with you."These phrases summarize the moment in which Alicia, Maricarmen and Zonia received the categorical diagnosis of the doctor: "Your son (daughter) has diabetes."
With some notion of the disease or without any, the three have in common that emergency day, at a time of their lives, when their children “were rare, pale, without energy, with much thirst and at the same time they often urinated many times to theday"."I thought it was summer," says Zonia, whose 7 -year -old son Adrián debuted with 18 months, or "what was the stretch," says Maricarmen, the mother of Iván, who of his 13 years has been managing his diabetes.No no.They were neither heat nor growth.They were their blood glucose levels that touched the 500 mg/dl (the reference value is between 70 and 110).
From the diagnosis, not only changed the lives of children, but also that of those around them.Because diabetes impacts family and family impacts diabetes.On the one hand, schedules, food and routines are changed, and, on the other, it is the best shelter.This is precisely the powerful reason why this year, World Diabetes Day, which is celebrated today, is dedicated to the family.
Diabetes constitutes the second most frequent chronic disease, which is characterized by a high level of blood glucose.In Spain, more than 29,000 children suffer from it, of which 95% has type 1. Type 2 is more common in adults, and normally, it can be controlled with a healthy life;Not so of type 1, which can only be kept in line injecting insulin.Today, children have access to insulin pumps, which allow instead of clicking 6 or 7 times a day as it was done with syringes or pen, they have constant insulin through an infuser and a catheter, which is changed every three or four days."It has improved the quality of life of children and parents," says Alicia, a 17 -year -old mother.
Understanding what diabetes is is one thing.Assuming it as a new life partner, is another.When you have to learn new concepts, put injections, measure carbohydrates, adjust insulin, reformulate the purchase of super and an extensive list of duties, the family seems like the most unconditional support.
Why is the family so important?
The answer seems obvious.To everything we can say, we must not forget that when the child is small, everything related to diabetes depends on the parents and caregivers of the child.Therefore, although the child has some autonomy, parents will remain pending glucose control.
“When the child grows -says Dr. Beatriz García Cuartero, pediatric endocrinologist at Ramón y Cajal Hospital and president of the Spanish Pediatric Endocrinology Society,“ we must favor its autonomy, so that you can handle diabetes with independence when you are an adult”, What is also the responsibility of the family instilling it.
And in the voice of Olga Sanz, a psychologist specializing in diabetes and who lives the disease in the first person since the age of 21, “it is good that, at all times, the child perceives that he is valued for himself, regardless of his diabetes, andThey know that parents are by their side, physically and emotionally. ”
Diabetes control is very important, but it is never more than the child.Talking with him openly is healthy.
How to tell the children?
It is not the same when diabetes appears in a 15 -month -old boy than when it appears in a 10 years or in adolescence.Dr. García argues that the most important thing is to explain the new situation to the extent that thechild can understand it.“It is difficult for a very young child to understand at first that he will receive injections every day, but we can support ourselves in stories, for example, so that his adaptation is easier.An older child can understand it better and even get involved in the measurement of glycemia, the calculation of carbohydrates rations and insulin injections. ”
In addition, it will influence the perception that the family of the disease has: that I will be the message that is transmitted to the children."If your environment sees the pathology negatively, children grow up with that image and want to hide it because they are ashamed," says the psychologist."Nor should this make a taboo," adds the expert."It is not necessary to exhibit it, but neither does it hide it," says Sanz.
A good idea is to find the points of communication with the child.Zonia, for example, explained to his son Adrián, that if he was not involved in his treatment, he could not do all the things he wanted to do.Perhaps that was what motivated his son most to promptly control his sugar levels, because in addition to playing basketball, he wants to continue dancing Breakdance, playing drums and practicing swimming.Much more effective than if your mother had explained the complications that diabetes can have in health.
how the parents can help
The psychologist says that “the key is to assume the disease as part of the day -to -day routine.But, it is not necessary to be talking about diabetes all the time or that it is a monothem, ”he recommends.In his book The Diabetes of my son, Sanz tells some tips on how children can be helped when they have just told that they have diabetes.
If their environment sees the pathology negatively, children grow up with that image and want to hide it because they are ashamed
Diabetes control is very important, but it is never more than the child.Talking with him openly is healthy.
You have to do your best to treat the child with diabetes as one more within the family, do not overprotect it or take away importance.A balance.
While it is necessary for parents to vent if they wish (sadness, anxiety, concern, anger), it is convenient for the child to perceive normality and not negative emotions that make him feel guilty.
The best information will always be the one provided by the diabetological team.
As far as possible, continue carrying out the same activities, works, tasks and hobbies you performed before diagnosis.
It is advisable that both parents share learning, as well as other relatives who can help you in treatment.
A management failure or oblivion is passenger and can help to learn.
The idea is that the child becomes more autonomous.Make sure to give all the indications, it is good that he leaves and goes to the activities that the rest of his friends.The Madrid Diabetes Association, for example, organizes camps in which they are taught, especially to handle themselves with their illness.
It is convenient that the whole family has the same food, which is nothing more than a healthy.Nothing to isolate the child or their meals.And if there is something exceptional, such as ice cream, for example, better control glucose and correct insulin levels, but not leave it apart.It is not necessary to say that a special menu is made for and for it.
The mystery of adolescence ...
A especially delicate period is when that child who already did his controls greatly, measured his carbohydrates and handled his insulin bomb perfectly, enters adolescence.If, under normal conditions, this is one of the stages of life that parents are always caught, if the management of chronic disease such as diabetes is added, the diabetes, thePanorama is complicated.
Boys, like any teenager toileTowards everyone and, of course, also towards diabetes.
Alicia lived this reality with anguish when her daughter was 15 years old.“He refused, he rebelled, he forgot, he was angry, he believed that nothing would happen to him, that he controlled everything.
And I didn't know how to understand that he had to control glucose as always. ”Everything is exacerbated if there is also to handle the disease.Given this scenario, psychologist Olga Sanz reminds us that it is normal, that it will not always last and, even if it seems, the parents play a key role also at this stage."It costs a lot, but I learned that you have to release them and let them be autonomous, let them mistake and learn," Alicia reflects.
The psychologist comments that “the most complicated scenario is that they are not controlled, that they eat hidden, that they feel weirdo.They are afraid of being different, not to like, what others think, low self -esteem and fear of puncture and feel bad, and not being able to stay with friends, go out, do sports, go to the disco ... ”.
And without forgetting that in adolescence it adds, as Dr. Santiago Conde, pediatrician of the Aragonese Health Service, another factor: the hormonal revolution.“At the hormonal level, adolescence is important changes in the management of diabetes.In the hormonal environment that occurs in puberty, it is common for a pattern to have a greater tendency to elevation of blood glucose figures in the second half of the night, which demands adjustments in the treatment in the early morning. ”