The speech therapist: Treating children with food aversions

Ingalill Ek
Ingalill Ek (© Private)

Ingalill Ek works as a speech therapist (speech pathologist or logoped) at Folke Bernadotteregionhabelitering (FBH) — a department of the Akademiska sjukhuset in Uppsala, Sweden. She has many years’ experience of working with children, including those with congenital heart defects who have eating difficulties due to motor problems or food aversion.

Together with her multi-professional team at FHB she has developed a method to find ways in which to treat children with food aversions. She and her colleague Elisabeth Uhlén-Nordin have also written a book on this topic, in which she explains that the child should be seen as an individual; the child should not forced, but to allowed take his or her own time, guided by the parent, in learning how to eat.

Why do some children with congenital heart disease not want to eat when they are strong enough to be able to do so? Long-term feeding by nasogastric tube is a doubtful explanation for this question, since, for example, children who later develop cerebral palsy and thus have the same experience of tube feeding often want to eat despite sometimes severe oral motor difficulties.

These children want to eat, but they are unable to. Children with congenital heart disease can eat, but they refuse to.

“The reason for their reluctance to eat is unclear”, Ingalill says. “But what we can see is that these children show strong aversion to tactile input if there are lumps in the food or if there is too much food on the spoon, for example.” This aversion is sometimes so strong that the child shows signs of nausea or even vomits. However, they are often able to drink without difficulties.

Tactile hypersensivity

“Since eating is not about motor difficulties, we speculate that the children’s sensory system overreacts,” Ingalill explains. “A tactile overreaction of our innate reflex is to get rid of something that could be dangerous to swallow.” Smells or tastes also can give sensory reactions. Another reaction is a strong unwillingness to get sticky fingers.

When a child is born with a life threatening disorder, the focus should be on the advanced medical and chirurgical treatments that are available. However, nutrition is essential for the child’s survival. “Sometimes there is a paradox between the ‘difficult’ and the ‘simple’, as the treatments get more and more advanced and a greater number of children can have a good life,” Ingalill says. “However, medical treatment, and inspiring and teaching the child to eat by mouth, sometimes do not keep the same pace.” Some parents are left alone with the hard task of finding ways in which to feed their child.

The feeding tube

It is also important to bear in mind that not all children with congenital heart defects have the same problems with eating—ie, not all have an overreaction on the texture on the food. Many of them have no difficulty eating at all after an operation when the feeding tube has been taken away. But some children do have difficulties with using their mouth.“I think that it is important to leave the feeding tube until the child eats well by mouth, to avoid stress at mealtimes.”

“The nasogastric tube is often considered to irritate children while eating, but my experience is that many children tolerate the tube very well. Children need to be looked at individually, with several factors considered including the severity of the congenital heart defect, and their ability and interest of eating.”

A child who shows signs of hypersensitivy should always be offered foods in tastes and textures that he or she accepts. “If the child prefers liquids, then that is good enough for the time being. Changes in the textures have to be taken very slowly and without the child overreacting in any way. Parents should try not to worry about what other children the same age are eating.”

Let it take time

“We work with the parents of children with congenital heart defects. When the operation is complete and the feeding tube is taken away, many parents think that now starts a new life, and they end up being a bit too anxious.” They are very anxious to get their child to eat; if the child hesitates and says “no, I don’t want to eat this, I’m not ready for chunks in my yoghurt” and despite the parents insistence the still the child refuses, then parent starts to worry. And suddenly eating and feeding have turned into a psychological problem. At this point the speech therapist sometimes can contribute with helpful advice.  “What we do is to give the child courage to try different food, and encourage the parents to continue, together with their child, to find ways to eat and to make the whole feeding situation more harmonious.”

Or just to explore different kinds of food together with the child: how does this feel, how does this taste? This is long-term work. As a parent you have to be completely flexible.

“Do not have goals like ‘When my child starts at school he will understand to eat’. It does not work that way. The parent has to give their child confidence in eating by showing respect for food and all the interesting tastes.” The child needs to be looked at as a unique person.

About Ingalill Ek

For the 30 years she has worked as a speech pathologist/logoped, Ingalill Ek has been interested in the rehabilitation of children with eating problems. Her team of health professionals, Matlaget, is based at the Swedish Folke Bernadotte Regional Habilitation Centre where they have been very successful in helping to rehabilitate such children. Together with a colleague, Ingalill Ek has written a handbook on how to help and talk to these children at mealtimes. She is currently finishing another project, called ‘Three perspectives on unwillingness to eat’.

Author(s): Ulrika Hallin
Last updated: 2008-09-22

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Comments on this article

21.10.2009 | Willow Langdale-Smith, UK
As an anxious parent of a 15 month boy who has been NG tube fed since hospital admission at 8 days old, due to a case of viral myocarditis and now dilated cardiomyopathy, reading this article has both saddened me and given me hope. He is also ventilated with a tracheostomy and Nippy ventilator.
My son is still accepting only a few reluctant tastes of food and shows no willingness to 'eat'. I try to relax and realise that with all his other health problems, so long as he is growing, eating is a skill he will learn in good time. But I wish with all my heart that there were a magic formula because I miss having a normal baby. Weaning a child is a wonderful experience. Our speech and language therapist is pleased with his progress and deals with us sensitively. I am so very worried that he will not eat. He is due to have a gastrostomy soon as the NG tube appears to irritate him and he vomits it regularly and I have to pass it several times a week. Very traumatic for the both of us.
22.02.2010 | nubia hernàndez, Nicaragua
Hola soy maestra de niños con capacidades diferentes y me encanta enrriquecer mis conocimientos dia a dia, cada vez que tengo la oportunidad de leer un artìculo como este me llena de placer, por que sè que hay profesionales capaces de dotar de conocimientos a otras personas que lo necesitan.
06.04.2011 | maria laura diaz zimermann, uruguay
en eate articulo veo reflejado el problema por el que estamos pasando mi familia y yo ,con respecto a la ingnorancia por la cual atravesamos co la hipersensibilidad tactil de mi pequeno hijo. con 39 meses no hemos logrado qu el niño coma niun alimento que se relacione con almuerzo o cenas .solo se alimenta con pequeños trozoz de pan o galletitas dulces , leche y alguna bebida gaseosa .
26.01.2012 | brithzairy aleman, usa
Hola, ver articulos como estos me hase comprender que no estoy sola en mi dificil tarea de haser que coma mi bebe de 14 meses..nasio prematura de 11 semanas antes de la fecha quese esperaba y grasias a dios ella esta bien, pero no quiere. Comer nada por la boca ellla tiene un boton en su estomaguito y aunque yo no queria que se lo pusieran,. Ahora digo bendito dios primero y luego bendita ciencia y bendito boton..
13.09.2012 | Judith Delgado, E.u
Hola tengo un niño de 4 anos, que solo toma pedis sure, y no tolera ninguna Comida, el solo saber que tiene comer le provoca vomits, me gustaria saber que debo hacer, ya que ls doctored no me Dan an explicacion a lo que mi hijo tiene.
23.09.2012 | Arse Robles, Mexico
Hola yo tengo una nena de un año con un padecimiento de cardiopatia congenita y tengo el mismo problema no quiere comer nada solido y si le doy papilla tiene que ser un poco liquida pq si no no la pasa al igual que todos los papas me preocupa mucho pero saber que puede salir adelante me animos para seguir luchando con ella...
12.01.2013 | Mª Isabel Valle, España
Tengo un hijo que en abril cumplira 8 años.
Cuando tenia 9 meses tubo otitis y le recetaron Augmentine, a partir de esa misma tarde empezo a dormir y a bomitar todo lo que tomaba. estubo 3 días así y cuando me fui de urgencias me dijeron que del medicamento no era (pero lo dudo mucho) le pusieron suero y para casa .
Al otro dia se empezo a notar mas despierto pero no quiso comer, y asi llevo 7 años, con una lucha a la que no le veo solucion, ya que le diagnosticaron adversion sensorial alimentaria.
Al niño se le esta empezando a notar que tiene carencias en el colegio.

Unos padres desesperados. Gracias.
Agradeceria contestacion.
13.01.2013 | Yessica Garcia, Mexico
Hola, tengo un nińo de 15 meses, que aun no puede masticar su comida estoy desesperada porque cada que va a comer tengo que hacerle mil juegos para que tolere la papilla, y si tiene un trozo que no este molido vomita todo, si alguien ha encontrado la manera de hacer que tolere esto le agradecería pudiera comentar.. Gracias!