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Full Ebook of Arfid Avoidant Restrictive Food Intake Disorder A Guide For Parents and Carers 1St Edition Rachel Bryant Waugh Online PDF All Chapter
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“ARFID Avoidant Restrictive Food Intake Disorder: A Guide for
Parents and Carers is an outstanding resource designed to help
parents/carers understand the complexities of a diagnosis of ARFID,
its consequences and treatment. This accessible guide combines
clinical cases and up-to-date research. Bryant-Waugh’s depth of
experience working with children and families with ARFID brilliantly
captures how to make sense of the everyday challenges that a
diagnosis of ARFID brings to children and their families. This ‘go-to’
resource fills a much needed gap in providing parents/carers with
strategies in supporting their child with ARFID.”
Debra K. Katzman, MD, Professor of Pediatrics, Hospital for Sick
Children and University of Toronto
Rachel Bryant-Waugh
First published 2020
by Routledge
2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN
and by Routledge
52 Vanderbilt Avenue, New York, NY 10017
Routledge is an imprint of the Taylor & Francis Group, an informa business
© 2020 Rachel Bryant-Waugh
The right of Rachel Bryant-Waugh to be identified as author of this work has been
asserted by her in accordance with sections 77 and 78 of the Copyright, Designs
and Patents Act 1988.
All rights reserved. No part of this book may be reprinted or reproduced or utilised
in any form or by any electronic, mechanical, or other means, now known or
hereafter invented, including photocopying and recording, or in any information
storage or retrieval system, without permission in writing from the publishers.
Trademark notice: Product or corporate names may be trademarks or registered
trademarks, and are used only for identification and explanation without intent to
infringe.
British Library Cataloguing-in-Publication Data
A catalogue record for this book is available from the British Library
Library of Congress Cataloging-in-Publication Data
A catalog record has been requested for this book
ISBN: 978-0-367-08608-4 (hbk)
ISBN: 978-0-367-08610-7 (pbk)
ISBN: 978-0-429-02335-4 (ebk)
For Alexander, Will, Annelies and Joe,
who have always helped me to keep
things in perspective when it comes to
parenting, children’s eating, and family
mealtimes.
Contents
List of illustrations
Acknowledgements
Preface
Glossary
Introduction
1 What is ARFID?
2 Who can develop ARFID?
3 Why does someone develop ARFID?
4 What are the consequences of having ARFID?
5 What can I do?
6 What is the best treatment for ARFID?
7 What about the future?
8 Closing words
References
Index
Illustrations
Figures
0.1 The six core C factors
1.1 What ARFID is
1.2 What ARFID is not
3.1 Model for understanding the development of difficulties
3.2 Possible causes of low interest in food or eating
5.1 The 5-step model towards change
Tables
1.1 Points of possible similarity and difference between ARFID and
anorexia nervosa
5.1 Applying the 5-step model to ARFID
5.2 Key areas of risk in relation to ARFID in children and young
people
6.1 Clinical expertise informed practice: addressing the main
driver(s) of avoidance/restriction
Acknowledgements
With heartfelt thanks to all the families I have had the privilege to
work with over the years and from whom I have learned so much.
My foremost aim has long been to ensure that your stories and
experiences are captured through research and writing, and used to
continually shape my own clinical practice for the benefit of other
families in similar situations. For all the times I have not got things
right, or have misunderstood, I apologise.
Many thanks to my trusty ‘critical friends’ for help with reading the
manuscript through and making suggestions for clarifications and
changes to make the text more readable and easier to follow.
Preface
Rachel Bryant-Waugh
January 2019
Glossary
This is a book about ARFID – perhaps not a name to trip off the
tongue and indeed one that many people have never even heard of.
This is perhaps not entirely surprising given that ARFID, or
‘avoidant/restrictive food intake disorder’, was first introduced as a
term as recently as 2013. Before then, although ARFID did not exist
as a formal diagnosis or formally recognised condition, the eating
difficulties it covers certainly did. These were known by a large
range of different names which included ‘feeding disorder’, ‘selective
eating disorder’, ‘food neophobia’, ‘functional dysphagia’, ‘infantile
anorexia’, ‘sensory food aversion’, ‘extreme picky eating’, ‘food
avoidance emotional disorder’, ‘food phobia’, ‘behavioural feeding
problems’, and many more. All these different names meant slightly
different things to different people, which in turn meant that
developments in treatment did not really progress as well as they
might have otherwise. It was a bit like being in a room full of people
trying to talk about a common topic, but all speaking different
languages. In such a situation, there may be a shared understanding
of a few words, but communication between individuals can only
take place in a very simple way. We know that the best research,
which is so needed to underpin positive changes in health care,
relies on collaboration and being able to replicate the results of
treatment trials. If there is poor agreement, or if there are variations
in understanding about what you are talking about in the first place,
you can see the problem!
If you are a parent, you may have started reading this book
because your child, or a child in your wider family, has eating habits
that are causing you concern. They may be struggling to eat a
sufficient amount or an adequate range of foods and you want to
find out more. You may be a teacher, a child-care worker, or a family
friend with worries about a child you know, or you may be a health-
care professional seeing children and their families in a clinic setting.
Whoever you are, you may have searched on the Internet for more
information about eating difficulties and in doing so, come across
ARFID. Alternatively, you may have heard about ARFID from
colleagues, friends or relatives. One thing may well have struck you
– there seems to be a fair amount of confusion and difference of
opinion about what it is and how it can best be managed. Again,
perhaps this is not entirely surprising given its recent introduction
and the preceding muddle of terms, but confusion and differences of
opinion can be far from helpful if you need reliable, up-to-date
information and advice. That is where this book about ARFID comes
in. Its content is based in part on the questions, concerns, insights,
challenges, and successes of many families who have first-hand
experience of ARFID. My work over many years has brought me
together with these families and one of my responsibilities to them
has been to ensure that their stories and experiences are shared.
The text is also informed by experience derived from clinical practice
and research to date, which has focussed on ARFID and restrictive
eating difficulties. The aim of the book is to provide information to
help with uncertainty, to foster hope and understanding, and to
relieve some of the worry and distress that may accompany having a
child with ARFID.
The text is structured around common questions, asked by many
parents. What is ARFID exactly? Who can develop it, and why? What
happens to someone who has ARFID? Can it be treated and will it
ever go away? Is it dangerous? What are the immediate and longer-
term implications for health? What can I do? What about the future?
Is someone with ARFID likely to develop all sorts of other problems?
One of the themes running through the book is the importance of
what are referred to here as the core ‘C factors’. These are illustrated
in Figure 0.1 below. They include important aspects of ARFID,
namely, Characteristics (discussed in Chapter 1 – What is ARFID?);
Correlates, or things that tend to go with having ARFID (discussed in
Chapter 2 – Who can develop ARFID?); Causes (discussed in
Chapter 3 – Why does someone develop ARFID?); Consequences
(discussed in Chapter 4 – What are the consequences of having
ARFID?); Care (discussed in Chapter 5 – What can I do?, and in
Chapter 6 – What is the best treatment for ARFID?); and Course
(discussed in Chapter 7 – What about the future?). The ‘C factors’
certainly all need further exploration if we are to improve our
knowledge of ARFID, and in particular if we are to be able to know
how best to match different treatment approaches to different
individuals.
What is ARFID?
What is ARFID exactly? What are its key features? Is it always the
same, irrespective of who has it? In this chapter we will discuss the
characteristics of ARFID, in which we will consider the distinctive
nature and essential features of ARFID. It will cover the definition
and diagnostic criteria for ARFID in some detail, as well as give
examples of how different aspects of ARFID are manifested in
everyday life. As this book is primarily intended for parents and
carers of children under the age of 18 years, individuals in this age
range will be used in the examples. However, do remember that this
diagnosis can in theory be given to a person of any age, so that
some of the content of the examples might apply to adults with
ARFID as well. It is helpful to be fully informed about what ARFID is
and what it is not, both in terms of your own understanding of the
nature and extent of your child’s difficulties, but also so that you can
clearly describe specific areas of difficulty and why these are causing
you concern.
If you read the chapter right through, the idea is that should you
need to, you will be able to calmly explain that no, ARFID is not the
same as normal picky or faddy eating. So many parents and carers
describe professionals batting away their concerns with ‘advice’, such
as ‘No need to worry, he’ll grow out of it’, or ‘Maybe if you were a bit
firmer at mealtimes, it would help’, or ‘You just need to make sure
she eats more fruit/vegetables/protein/dairy / [or some food you
know your child is less likely to eat than to fly to the moon and
back]’. Friends and relatives may also not be the pillars of support
you hope they will be. On describing the difficulties they are facing
to those close to them, many parents report being told things like
‘Oh yes, mine is just the same, I can’t get her to eat courgettes at
all…’, or ‘Let me have him for the weekend, we’ll soon sort this out’,
or ‘You’ve always been too soft with them’. Mostly, such suggestions
and comments are not intended to be deliberately hurtful or
unhelpful, and are for the most part likely to be borne out of a
simple lack of knowledge and understanding about ARFID. Being
well-informed yourself is the first step in standing your ground,
helping others to understand, and doing your best as a parent to
ensure your child’s needs are met.
Let’s start with the formal definition of ARFID. As already
mentioned, the American Psychiatric Association was the first to put
forward diagnostic criteria for ARFID in DSM-5 (APA 2013). In this
system, there are four main requirements that have to be met
before it would be appropriate for a clinician to give a formal
diagnosis. The first is the most detailed and we will look at this
carefully. The other three requirements that need to be met are
known as ‘exclusion criteria’. This means that they cover things that
need to be ruled out, that is, things that are clearly not present. If
one or more of these three exclusion criteria is identified, then the
person would not be given an ARFID diagnosis.
The first requirement lies in the name ARFID, which as we have
seen stands for avoidant/restrictive food intake disorder. There
should therefore clearly be a disturbance of feeding or eating,
characterised by avoidance or restriction of food intake. This
disturbance may be driven by one or more of a number of different
factors. In DSM-5, three examples are given, based on well-
described and well-documented clinical presentations. The first
example is that the avoidance or restriction may stem from a lack of
interest; the second example is that it may stem from sensory-based
avoidance; and the third example is that it may stem from concern
about possible aversive consequences of eating. We will take a
closer look at each of these factors, which may be driving the
avoidance or restriction of food intake, in turn.
Lack of interest may be present either in relation to eating or in
relation to food in general. Some people find it difficult to make time
to eat or to remember to eat, either because they are fully engaged
in doing more interesting things, or because they simply do not
seem to have a very good sense of hunger and appetite. We will
look at some of the possible reasons behind this apparent lack of
interest in later chapters when we consider correlates (Chapter 2:
Who can develop ARFID?) and causes (Chapter 3: Why does
someone develop ARFID?). Sometimes low interest seems related to
the individual experiencing eating as a chore, or simply not deriving
pleasure or satisfaction from food. This can be hard for many of us
to understand; mostly, we are very aware when we are hungry and
most of us do experience some pleasure and satisfaction in eating,
particularly our favourite foods. Solly’s eating difficulties are an
example of low interest in food and eating being a main driver for
his restricted intake. He would take a very long time over his meals,
often ‘pouching’ food in his cheeks, which is a behaviour often seen
in children who are not particularly motivated to eat.
Solly is a six-year-old boy who lives with his parents and younger brother.
He is a slight child who looks tired and underweight. His parents describe
him as a polite boy who is quite quiet at home and at school. Solly likes to
draw and colour, and can spend long periods amusing himself playing with
his cars. At school, he is said to be well-behaved and does not cause his
teacher any trouble. She has noticed that he is rather shy and reticent,
rarely putting up his hand and happy to be on his own in the playground.
Solly’s feeding had been difficult from the start. He vomited a great deal
from the start and became very unwell. It took a while before his difficulty
was diagnosed as pyloric stenosis (a condition in which food or, as here,
fluid is prevented from passing normally through the stomach into the small
intestine). This was successfully treated by surgery but unfortunately Solly
then came down with a nasty chest infection and again struggled to feed. A
nasogastric tube was inserted and he stayed in hospital for a while with his
mother, who was understandably very worried about him. Over time, she
was able to encourage him to take milk and soft foods by mouth and
eventually the nasogastric tube was removed. When they attended the
clinic with Solly now six years of age, his mother described it as always
having been hard work trying to get him to take enough. She felt that he
had never been that interested in eating.
Solly struggles with his health on and off, particularly in the winter, being
prone to catching minor coughs and colds. When unwell with these, his
eating tends to deteriorate and his weight gain overall is only just tracking
the lower centiles on his weight chart. He has no other significant medical
conditions of note.
Solly’s parents describe trying to get him to eat enough as requiring a lot
of effort. He will often put off coming to the table, asking to be allowed to
finish playing, or to complete a colouring picture. When at the table he is a
very slow eater, often chewing a mouthful for a very long time and
sometimes holding food in his cheeks. His mother said that she often has to
remind him to swallow so that he will move on to the next mouthful. They
are worried that as he grows older he won’t eat enough to keep himself
healthy. The family doctor has told them that there is nothing physically
wrong with Solly, he just doesn’t seem interested in eating.
§ 259. P. 137, l. 15: Ensi par les Englès.—Ms. d’Amiens: Ensi par
les Englès estoit ars et essilliés, robéz et pilliéz li bons pays et li cras
de Normendie. Ces nouvelles vinrent au roy de France qui se tenoit
à Paris, coumment li roys englès estoit en Constentin et gastoit tout
devant lui. Dont dist li roys que jammais ne retourroient li Englèz, si
aroient estet combatu, et les destourbiers et anois qu’il faisoient à
ses gens, rendus. Si fist li roys lettrez escripre à grant fuison, et
envoya premierement deviers ses bons amis de l’Empire, pour ce
qu’il li estoient plus lontain, au gentil et noble roy de Behaingne, et
ossi à monseigneur Charlon de Behaingne, son fil, qui s’appelloit
roys d’Allemaingne, et l’estoit par l’ayde et pourkas dou roy Carlon,
son père, dou roy de Franche, et avoit jà encargiet lez armes de
l’Empire. Si les pria li roys de Franche si acertes que oncques peult,
que il venissent o tout leur effort, car il volloit aller contre les Englès
qui li ardoient son pays. Chil dessus dit seigneur ne se veurent mies
excuzer, ains fissent leur amas de gens d’armes allemans,
behaignons et luzenboursins, et s’en vinrent deviers le roy
efforchiement. Ossi escripsi li roys au duc de Lorainne, qui le vint
servir à plus de quatre cens lanchez. Et y vint li comtez de Saumes
en Saumois, li comtez de Salebrugez, li comtez Loeys de Flandres, li
comtez Guillaumme de Namur, chacuns à moult belle routte.
Encorrez escripsi li roys et manda especialment monseigneur Jehan
de Haynnau, qui nouvellement s’estoit aloiiés à lui par le pourkas
dou comte Loeys de Blois, son fil, et dou seigneur de Faignoelles. Si
vint li dis chevaliers, messires Jehans de Haynnau, servir le roy
moult estoffeement et à grant fuisson de bonne bachelerie de
Haynnau et d’ailleurs. Dont li roys eult grant joie de sa venue, et le
retint pour son corps et de son plus privet et especial consseil. Li
roys de Franche manda tout partout gens d’armes là où il lez pooit
avoir, et fist une des grandez et des grossez assambléez de grans
seigneurs et de chevaliers, qui oncques ewist estet en Franche, ne à
Tournay, ne ailleurs. Et pour ce que il mandoit ensi tout partout gens
et en lontains pays, il ne furent mies sitos venu ne assamblé;
ainchoys eut li roys englèz mout mal menet le pays de Constentin,
de Normendie et de Pikardie, enssi comme vous oréz recorder chi
enssuiwant. Fº 90.
—Ms. de Rome: Ensi, en ce temps dont je parole, que on compta
en l’an de grasce mil trois cens et quarante siis, fu gastés et essilliés
li bons pais et li cras de Normendie, de quoi les plaintes grandes et
dolereuses en vinrent au roi Phelippe de Valois, qui se tenoit ens ou
palais à Paris. Et li fu dit: «Sire, li rois d’Engleterre est arivés en
Coustentin à poissance de gens d’armes et d’archiers, et vient tout
essillant et ardant le pais, et sera temprement à Can, et tout ce
cemin li fait faire messires Godefrois de Harcourt. Il faut que vous i
pourveés.»—«Par m’ame et par mon corps, respondi li rois,
voirement i sera pourveu.» Lors furent mis clers en oevre pour
lettres escrire à pooir, et sergans d’armes et messagiers envoiiés
partout [deviers] signeurs et tenavles de la couronne de France. Li
bons rois de Boesme ne fu pas oubliiés à mander, ne mesires Carles
ses fils, qui jà s’escripsoit rois d’Alemagne, quoi que Lois de Baivière
fust encores en vie. Mais par la promotion de l’Eglise et auquns
eslisseurs de l’empire de Ronme, on avait esleu Carle de Boesme à
estre rois d’Alemagne et emperères de Ronme; car li Baiviers estoit
jà tous viels, et aussi il n’avoit pas fait à la plaisance des Ronmains,
ensi que il est escript et contenu ichi desus en l’istore. Si furent
mandé li dus de Lorrainne, li contes de Salebruce, li contes de
Namur, li contes de Savoie et messires Lois de Savoie, son frère, le
conte de Genève et tous les hauls barons, dont li rois devoit ou
pensoit à estre servis. Et aussi [fu escript] as honmes des chités,
des bonnes villes, des prevostés, bailliages, chastelleries et mairies
dou roiaulme de France, que tout honme fuissent prest. Et lor
estoient jour asignet, là où casquns se deveroit traire et faire sa
moustre, car il voloit aler combatre les Englois, liquel estoient entré
en son roiaume. Tout chil qui mandé et escript furent, se pourveirent
et s’estofèrent de tout ce que à euls apertenoit, et ne fu pas sitos
fait. Avant eurent les Englois cevauchiet, ars et essilliet moult dou
roiaulme de France.
Si furent ordonné de par le roi et son consel, sitos que les
nouvelles furent venues que li rois d’Engleterre estoit arivés en
Coustentin, mesires Raouls, contes d’Eu et de Ghines et
connestables de France, et li contes de Tanqarville, cambrelenc de
France, à cevauchier quoitousement en Normendie, et li traire en la
bonne ville de Can, et là asambler sa poissance de gens d’armes et
faire frontière contre les Englois. Et lor fu dit et conmandé, tant que il
amoient lor honneur, que il se pourveissent, tellement que les
Englois ne peuissent passer la rivière d’Ourne qui court à Can et
s’en va ferir en la mer. Chil signeur obeirent et dissent que il en
feroient lor pooir et lor devoir, et se departirent en grant arroi de
Paris et s’en vinrent à Roem, et là sejournèrent quatre jours, en
atendant gens d’armes qui venoient de tous lés, et puis s’en
departirent; car il entendirent que li rois d’Engleterre estoit venus
jusques à Saint Lo le Coustentin. Et cevauchièrent oultre et vinrent à
Can, et là s’arestèrent et fissent lors pourveances telles que elles
apertiennent à faire à gens d’armes qui se voellent acquiter et
combatre lors ennemis. Encores fu escrips et mandés dou roi
Phelippe messires Jehans de Hainnau, qui s’estoit tournés François,
ensi que vous savés. Si vint servir le roi moult estofeement et bien
accompagniés de chevaliers et d’esquiers de Hainnau et de Braibant
et de Hasbain, et se contenta grandement li rois Phelippes de sa
venue. Si venoient et aplouvoient gens d’armes, de toutes pars, pour
servir le roi de France et le roiaulme, les auquns qu’il i estoient tenu
par honmage, et les aultres pour gaegnier lors saudées et deniers.
Si ne porent pas sitos chil des lontainnes marces venir que fissent li
proçain, et les Englois ceminoient tout dis avant. Fº 112.
Voir aussi Sup. var. (n. d. t.)