ARFID AWARENESS UK

Please be mindful that we cannot provide a diagnosis or recommend a practitioner. If you are concerned about yourself or a family member, please seek advice from your GP.

 

Email: info@arfidawarenessuk.org

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FAQs

1.

Q. I think I / a loved one has ARFID, where do I go to ask for help and get a diagnosis?

 

A.  If you suspect your child may have ARFID you should consult with your GP in the first instance.  There are some useful documents in our resources section which you may like to print off to support your discussion. ARFID is usually diagnosed by a Paediatrician or Psychologist and a referral to either of these services can be made through your GP.
 

2.

Q. I suspect that I may have ARFID.  Do I need a diagnosis?

 

A.  It is not essential to seek a diagnosis of ARFID; although some may find this useful in order for healthcare professionals to better tailor their advice, to gain support from schools, the workplace or when seeking additional help if it is affecting day to day functioning or overall health.
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3.

Q. What are growth charts and how are they used in relation to ARFID?

 

A.  A paediatrician or dietitian may use growth charts to monitor your child to ensure that they are maintaining adequate weight and height gain for their age.  Growth charts make it possible to plot the progression of growth (including weight and height) over a number of weeks, months and years from birth until 18 years of age. A growth chart is useful to assess if your child is growing well or if there is a concern about growth with a drop in centiles. Growth charts are based on healthy breastfed population, exhibiting the ideal growth pattern and the ideal is for both weight and length/height measurements to be performed to make an accurate assessment.  BMI is a measure that uses both weight and height to assess if the weight is healthy. 

In our resources section you can find UK growth charts from the Infant and Toddler pages for reference. These charts are for your reference only and should always be interpreted by a medical professional; taking into consideration the associated eating disorder/ARFID.
 

4.

Q. Can a child be overweight and have ARFID? 

 

A.  Many children and adults with ARFID are not underweight;  some may even be overweight and this alone is not a predetermining feature of ARFID.

5.

Q. How do professionals measure someone has poor growth?

 

A.  Normal growth is defined as a child more or less following a specific centile from young age for both weight and length.  The UK NICE guidelines, provide clear guidance how to define this as 2 centile drop in weight over time. A drop in height growth usually indicates a more longer term problem with poor growth and for the assessment of both,  a medical professional will be required.  A suitable plan can then be made to monitor and support this.

6.

Q. What does a dietitian/paediatrician/feeding team/CAHMS do in relation to ARFID and getting a diagnosis? 

 

A.  All of these professionals can be pivotal in gaining a diagnosis of ARFID and is best managed by a multidisciplinary team. Every person’s experience is different and not every patient/client will see each of these services because of their ARFID.  Please take a look at the ‘professionals’ section on our website for more information on what each discipline does so that you can decide who best to approach in the first instance.

7.

Q. I/my child has difficulty taking vitamin supplements, are there any supplements that are tasteless/flavourless?

 

A.  There are some supplements that are tasteless and flavourless and do not need to be administered orally.  Some parents within our ARFID community recommend multivitamin patches, however we cannot endorse them as there is currently not enough evidence based research available for us to do so. Please see the guidance document in our resources section for more information.

8.

Q. What can I ask my school/nursery to make as a ‘reasonable adjustment’ in order to help my child eat and drink comfortably during the day? 

 

A.  The transition from home to nursery or nursery to school can be an anxious time for both children and carers.  This can be heightened when that child has a medical condition to consider. Schools should be made aware of any feeding difficulties in order that they can put in place a plan to assist your child from day one.  There is a useful advice sheet for schools in our resources section which you can download to explain ARFID and its potential impact on your child during the school day. (Link here). One of the key challenges faced by many parents are school policies based on healthy eating’ and government guidelines which restrict the types of foods allowed into school as snacks and in lunchboxes.  ARFID is an eating disorder and reasonable adjustments must, and can, be made by schools to support your child to allow them to eat their preferred/safe foods throughout the school day.  As ARFID parents we know that ‘all foods are good foods!’. Your schools class teacher or SENCO should be contacted as they may already have children in school with similar needs.  As an example of what can be done, some members of our community have found the following adjustments useful:

  • Being allowed to have any safe food they want at break times and lunchtimes.

  • Not being expected to finish their meal prior to leaving the lunch hall.

  • Have flexibility about the mealtime environment to ensure that it's not overwhelming.

  • Being allowed access to snacks throughout the school day, not just during designated break times.

  • Having a member of staff that they can talk to about anything that concerns them throughout the day.

  • Close monitoring to ensure the support of their peers and wider school community.

  • Education of the staff and lunchtime supervisors regarding ARFID.

9.

Q. What can do that might help my child whilst I am waiting for professional help?

 

A.  Most individuals with ARFID are able to maintain their weight and carry on with normal life despite their food restrictions.  The key advice is to avoid any pressure to eat and to continue to offer preferred/safe foods as normal. In addition to the details on this website there are some very useful publications that you can read to give you a greater insight into ARFID, its effects and treatment options. If you seriously concerned about you or your child’s health at any time during the wait for an appointment, or their condition deteriorates significantly (i.e. they stop eating or drinking entirely or become dehydrated, then please do not hesitate to take them back to their GP or A&E as appropriate, keeping in mind that most A&E doctors will be unfamiliar with ARFID).

10.

Q. What is a food diary? 

 

A.  You will often be asked to provide a 3 day or more ‘food diary’ when attending appointments for yourself or your child.  This gives the medical professional a clear idea of a typical day’s intake from which they are able to establish any nutrient intake and a possible deficient intake for specific nutrients.  Please find a link to our Food Diary Template in our resources section.

11.

Q. What happens when I go to a feeding clinic and what should I take with me?

 

A.  All feeding clinics are run slightly differently and you should be sent a list prior to your appointment of anything the service wishes to see either before or during your assessment. However, there are some key things that we that you may find useful to bring with you on the day to make sure that you get the most out of your appointment:

  • Your child’s red book (depending on age) which contains details of their medical history, growth and height charts.

  • A food diary (our resources section has an example) with at least the 3 previous consecutive days food/drink intake.

  • Any blood test results within the last 6 months.

  • Any results of previous tests carried out by other services prior to your appointment.

  • Details and confirmation of any other medical diagnosis which may be relevant.

12.

Q.  What is food chaining and how can it help?

 

A.  Initially developed by Cheri Fraker, Food chaining is a technique that creates chains or links with foods you or your child already eat to new foods that would better support your growth, health or are more easily accessible.  It can enable you or your child to slowly expand your diet by gradually offering new foods that are similar to current safe or preferred foods. There are however, other techniques that can be equally, or more helpful (see ,Table 2: Types of feeding difficulty with suggested corresponding therapeutic strategies) in the article titled "Feeding Difficulties in Children with non-IgE mediated Food Allergic Gastrointestinal Disorders" which can be found in our resources section.