Today, the day after I finished this post, I met a mum for the first time who told me that the way she got her little boy to eat some meat at the age of 3 was by telling him that minced meat is what Spider-Man eats, and that's what makes him so strong and agile. She also got the sales girls in the butcher shop involved, so when they went shopping, the sales girls would always bring out this little boy's "spider-man meat" from the back of the store, saying it was something special that not everyone gets😊 I share this story with her permission because I think it's a beautiful example of how as mothers we are doing everything we can to make sure our children are healthy. But there are many other examples that I could give, all of which show how creative and persistent we can be as mums and parents when it comes to a varied diet. And this is something that is not visible from the outside, that the people around you, the professionals, often don't know. But we, who are affected, know.
(And may I point out that Peter Parker also developed a huge appetite after being bitten by the spider, and became incredibly agile and unbelievably strong:))
But on a more serious note, we know a lot about ARFID in terms of its onset, its maintaining mechanisms and its symptoms. We know that there are three main types, but they tend to overlap rather than occur alone. Information on its management is mainly available from case reports and, to a lesser extent, from articles on the effectiveness of different therapeutic approaches. There are many questions about effective treatment and there is currently no evidence-based international professional protocol for people with ARFiD and their families.
Many existing therapeutic approaches are used by professionals worldwide, with modifications. The most common are cognitive-behavioural therapy, which is recommended in the literature for children over 10 years of age, and Family Based Treatment (FBT), which, as its name implies, achieves results through family involvement. Effective treatments for various phobias have also been successful for ARFID, such as exposure therapy, which involves the gradual and repeated introduction of new foods, again with older children (see https://www.arfid.demetrovics.hu/post/tervezett-kóstolás-tervezett-nyugalom ), with the help of a specialist, in therapy sessions or in the child's home under the guidance of the parents.
What is less talked about is the issue of assistance and care for people with ARFID and their families. One of the most important observations about ARFID is that it can manifest itself in a wide variety of manifestations, causing a diverse picture of symptoms. This makes not only diagnosis but also management difficult. When you think about it, it is easy to understand that it is quite different to help a family where the child will only accept two types of pureed food than it is when there is a safe food list of 15-20 foods. In many cases, the problem is paradoxically that the child is developing well, there are no nutritional deficiencies, and he is no more sick than average. In such cases, the professionals and doctors who care for him or her usually reassure parents that he or she will grow out of it, or that there is nothing wrong, "he or she is just picky". This can be very frustrating for parents because they know their own child, they feel that he is different in some ways and they know with relative certainty that he will not outgrow it. The older the child is, the more certain they tend to be. These parents often go from specialist to specialist and get no real help, or maybe one or two general pieces of advice, which, because they are not tailored to the individual or family, are not really helpful.
In a recent study in New Zealand (https://mh.bmj.com/content/49/4/631.abstract), researchers looked at the ways in which families access help. They found that the parents they interviewed were unable to participate in more intensive forms of research, such as group discussions or making a film about their experiences, simply because they did not have enough time. Caring for a child with ARFID requires a whole person. In addition, an important finding of their research was that real care, caring for the family, was very often missing from the equation. These families received a lot: consultations with different doctors, advice from dieticians, from a nurse midwife. In addition, they often tried to 'cure' the disease, to manage it, to alleviate the symptoms, in therapies led by a psychologist.
What was missing was the recognition that these parents are taking care of their children day after day, without really getting any guidance or reassurance that they are doing the right thing. The lack of information is also present among professionals and often they give parents inappropriate advice. But more often, not knowing about the illness, they think the parent has 'spoiled' the child's eating and blame him or her. When a child eats only a few things, most people's first thought is that something must have been deliberately spoiled by the parent. And even if they don't say it out loud, the blame of the parent is present. Researchers have formulated that it is precisely those mothers and parents who do their best for their children who are blamed and stigmatised, because if that child only eats chicken nuggets with chips, then we are really doing a great job as parents if we give them that.
From the outside, without knowing the situation, it is easy to express our opinions with a wag of the head and a roll of the eyes, but this is the result of a poor or incomplete assessment of the situation. There is also a lot of talk in the research about the importance of what help means to whom, and this is something that is also very important to me when I meet a family. It is not even possible to generalise about what the goals of therapy are. They are different for every family. Until we get to know each other and "get the hang of it", it is not possible to know what strategy to choose, what pace to try to go at. What will help THEM at all? Parents are often forced, after trying everything on their own, to go through the treatment options. In this regard, research reports "trial and error" approaches, "dead ends", "non-existent", "frustrating". What is clearly lacking is an ARFID-specific treatment protocol or, in its absence, at least a common approach on which professionals have reached consensus and child care systems are aware of it.
The situation is no different in Hungary, and I think as parents we can agree with most of the statements made in the research. What is very important is the personalisation of therapy. The most basic question during the interviews is what the family wants. The child - if they are older - and the parents. Of course, there are times when it is necessary to increase the calorie intake because the child is not developing according to his or her age, or to introduce a nutrient or vitamin if there is a deficiency. In such cases, there is no question of what the primary therapeutic goal is. In the vast majority of cases, however, there is no weight loss or nutrient deficiency, but "merely" a very selective diet. In such cases, it is important that the professional to whom the parent turns "listens" to his or her requests and tries to help him or her and the child as best he or she can. Whatever that help may mean.
For parents of a child with ARFID, it is often a great anxiety and challenge to find a way to get the child to eat safe food at nursery or school, and to try to give the food in a way that he or she will accept, if possible. For example, don't put gravy on pasta or rice on a plate with stew. These requests are often difficult for teachers and kitchen staff to understand and, despite their best intentions, they may not be able to allow them with a clear conscience. It may help if they are told what is causing the child's difficulties, that this is a real illness and that forcing the child to eat in the usual way will not cure it, but will make it worse. Most people have either never heard of ARFID or, if they have, know very little about it. It is worth educating them, not just ourselves😊
In the same way, it is often in social life that illness causes the greatest difficulties. A birthday party, a sleepover, or even a longer camp can make even the bravest child and parent feel insecure. In these cases too, it is the parent who takes the necessary steps to "rescue" the child, explaining to the other parent or teacher what he or she will and will not eat, and asking him or her not to try to persuade the child to try other foods. At all such times, she is looking out for the child's best interests and trying to make the circumstances as easy as possible for the child to manage.
It's also important to talk about the fact that nowadays, under the aegis of healthy eating, parents are often also blamed for their children not eating enough fruit and vegetables. We know that this is the food category that is most difficult to introduce to these children. Fruits and vegetables all have different tastes, colours and textures, and there is a high unpredictability factor when eating them. And a child with ARFID does not like to take risks. But if we as parents have tried everything and he still won't eat them, it doesn't help if others look askance at us. What health and wholesomeness means is also something that I think is worth thinking about. It is certainly not the same for these children as it is for their peers with the average nervous system. In their case, because their senses are super-sensitive, we can't expect them to be completely 'cured', for all this to 'go away'. I often emphasise in therapy that there is much that can be done to improve it, and even more to help children to live with it without significant deterioration in their quality of life. But sensory sensitivities will always be there, and it is not the goal - for parents also - to eat everything.
What is most helpful for a child with ARFID is to get to know themselves, their own limitations and strengths, and to dare to risk exploring the sensory realm with the help of their parents and therapist. It is a long learning process, with tiny steps and tiny successes. Moreover, the process is not linear, there are often pauses, setbacks and breaks. I have worked with many families who, after a few interruptions, we have sat down to talk through the difficulties they are experiencing, to give them new impetus. It also happens that results are lost in the day-to-day, and it helps parents to have a professional to talk through what's going on, to reassure them that they're doing it the right way. It is such a process, it cannot be any other way, as it involves 'overriding' gut reactions.
And I think the biggest help for a parent of a child with ARFID is if people believe what they are saying and accept the goals they are setting and help them with what they are asking for.
There are huge differences between families in how big a problem they perceive this to be and when and what they ask for help with. Realigning expectations, setting realistic, short-term, foreseeable goals, and building parents' self-confidence are the primary goals of therapy. As parents, feeling that we have control over our child's eating and health is essential. Our belief in this indirectly influences the child's eating habits in the longer term.
I wish you, mums and dads, to get help exactly when and how you want it.