Arfid is now ‘finally’ on the agenda at a Health Council hearing on eating disorders.
“Anorexia is about ten years ahead of us, we have quite a lot to make clear to society,” says Rita Maris. With her two sons who have arfid and two books to her name, she is an expert by experience. She has been invited by the Health Council to give a presentation on Monday about the unknown eating disorder.
The Health Council is collecting knowledge about eating disorders, early detection and complex care that patients need. The fact that there is now attention for arfid, in addition to the well-known eating disorders such as anorexia and bulimia, is a sign for Maris that the disorder is finally being taken seriously at the highest government level.
‘Traumas of the compulsion’
She has already prepared her presentation. “I’m going to start with the harrowing story of a 17-year-old girl who sometimes tells her parents that she would never want to wake up again. She has been admitted to all kinds of clinics.”
As is so often the case, Maris says, doctors initially thought it was a behavioral problem that needed to be addressed. “They forced her to eat, a probe was forcibly placed in her throat. This girl has suffered so much trauma that no treatment is effective anymore.”
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Can’t or dare not eat
- Arfid stands for avoidant/restrictive food intake disorder: those who suffer from this eating disorder do not want or dare not eat certain foods
- Usually there is no focus on losing weight or weight, but there is a fear of what certain foods do to your body, such as choking. Sometimes there is a physical cause (such as not being able to swallow properly). This eating disorder can also coexist with autism.
- Behavioral therapy is the main treatment.
- In the Netherlands there are an estimated 150,000 children and 130,000 adults with arfid.
Source: KNOW on home doctor
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If the 17-year-old girl’s parents had known earlier that it was arfid, she could have been successfully treated. Rita Maris is convinced of that. “This still happens far too often: parents go to the doctor with, for example, a child who only eats chips, in the morning, in the afternoon and in the evening. The child looks fine or even fat, but you know as a parent that it lacks vitamins and important nutrients. I hear stories that GPs still say: ‘There is nothing wrong with the growth and the weight, come back if your child is underweight’.”
That’s why it’s so important for doctors to know about arfid, she says. Otherwise it will take months or years for them to figure out that it is something other than a parenting problem. Precious time, because at SeysCentra, with specialists in the treatment of arfid, the waiting time has now risen to one and a half years.
Extremely afraid to taste
It feels like a failure if you, as a father or mother, cannot get your child to eat, says Maris. Two of her children developed arfid, in her youngest this is due to his autism. From presents to ‘going to bed right after dinner’, she pulled out all the stops to get her oldest son to eat, but he was extremely afraid to taste anything.
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“You see your child getting thinner and thinner and then you get to the point where you give up. Then you are happy that he at least eats something.” For her son, that was white bread with sprinkles, three times a day for ten years. Serious shortages were found in the hospital. He had to be given vitamins and fed immediately. But giving high-calorie drinking food was of course not possible.
Children’s parties, lodging, birthdays, treats at school. It all became a problem.
In the end, the TV program Bizarre Eaters brought Maris’s family on the trail of arfid. “My son recognized himself in the adults who ran away crying when they had to taste something. But we also saw that help was there and that he could get rid of it.”
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Maris’ youngest child, Daniel, seemed to choke as a baby of seven months when he was fed bread. “I thought: not again after ten years of misery. I immediately sought help.” But as a 7-year-old boy, he now eats almost only liquid food. Chewing is still not in it. “You have to beg every bite. He has no hunger sting, even if you don’t give him anything all day, he doesn’t care.”
After more than five years of therapy, Daniel is used to bread, but one kind from the same store and with chocolate spread. “As soon as the rhythm changes, for example due to holidays, eating becomes difficult again. He does not want bread, the special biscuits and chips that he likes. He has lost some kilos. I am very happy that school is starting again.”
Another problem, also for other patients with arfid: new packaging. “Then the confidence is gone and he no longer eats it. For example, the bag of squeezed fruit in the taste pear and apple is no longer an option.”
‘Tree of a guy’
An intensive therapy in which her son will have to leave home for a long time and must be admitted, is the hope of Rita Maris. Now Daniel is not ready for that, because of his social-emotional disadvantage. Such a treatment has brought much good to her eldest son. He is now 16, likes everything and has grown into a ‘boom of a guy’.
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