F.E.A.S.T's Around The Dinner Table forum

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meadow
Hi

A friend of mine is very concerned about her daughter (7), who is showing all the signs of food avoidance emotional disorder. As far as I recall this isn't in the DSM-5 categorisation system, but has been a recognised condition. A recent referral to CAMHS for her daughter was turned down. She hasn't lost any weight yet, but this is clearly a worry to her parents.

Another friend contacted me yesterday about a 9 yr-old boy she knows who also seems to fit the description. He's eating nothing but lettuce 🙁 and losing weight. I've highlighted to her the physical risks and advised that he gets thouroughly checked out by the GP asap.

I've hardly read anything about FAED and what I have read suggests treating the cause of the anxiety primarily. This makes sense, but not if the wait list for CAMHS is 18 months, which it is where I work (we're meeting our 7 day/28 day ED requirement I believe at least). I presume FAED can morph into anorexia in some cases.

Does anyone know much about this condition?

Thanks as always x
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deenl
Hi meadow,

Here are some resources for you to browse.

A thread by cnkinnh with the differences between AN and ARFID (although my son was somewhere in between!)

A wonderfully helpful thread by Honey Badger who guided her son through selective eating and out the other side. A fab story.

A list of blog posts from Kartini Clinic on ARFID

Kartini blog posts on Selective Eating Disorder

And more posts on food phobia, also from the Kartini Clinic.

I would suggest that the kids need to be under medical care to ensure there are no other reasons and that they are not dangerously underweight. But most of the recovery will occur in the home and that the parents should read and learn as much as possible.

It might be an idea for them to also read Freeing your Child from Anxiety by Tamar Chansky. This book explains why and what is happening around anxiety but also gives parents scripts and skills to reduce the fears the children are feeling. Although not specifically for kids I also found Rewire your Anxious Brain by Catherine Pittman to be a wonderful book.

Warm wishes,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, no progress. Medical hosp to kick start recovery Feb 2016. Slowly gaining at home, seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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seaglass
Hi Meadow,

My d has an ED but also ARFID. She has always been a picky/fussy eater and just not that interested in food.

She's 14 and diagnosed now with AN. I had never heard of ARFID but knew that refeeding would be more of a problem due to her picky eating and problem with textures/smells of foods. I read up on it and after several months persuaded the CAHMS team to look into it. I wrote four pages of all the info I found with my reasons for thinking my d had ARFID for many years before it developed into a full blown ED.

CAHMS here have a specialist ED unit but, alarmingly hadn't heard of ARFID.

To their credit they researched, asked professionals for advice and now (11 months down the line) are just starting to make a specialised plan for my d's recovery.

We are not very far down the line but from initial meetings the treatment for ED remains same with focus on refeeding BUT CBT is also going to be used and lots of techniques like gradual exposure to foods, starting with just touching and smelling. Then food chaining will be introduced. This is looking at foods she likes and trying a similar food. It will be baby steps at the beginning with even just trying a different brand of same food or a very similar food (e.g. She likes baguettes so try a bagel) . I think there will be a 'ladder' of foods she will work towards challenging herself with (agreed with her) and lots of supportive exposure work to try them many times.

In hindsight I think if I'd known about ARFID years ago early treatment might have prevented ED.

And treatment for ARFID is gentle and supportive with lots of therapy, similar to treating a phobia.

It's harder to treat alongside AN obviously.

I expect the hardest thing for your friend will be to find help quickly with someone who understands ARFID.

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Tali97
Hi Meadow,


I encourage the parents to document everything. Do food diaries, take detailed notes to figure out what the child is avoiding and why. Does the child have a physical reaction that is happening every time they eat the food or do they think that there a reason why that a particular food is bad?  I know with hindsight that I can see the things that were missed when my son was a young child. Things that I brought up to doctors time and again that were dismissed due to his weight being good.

Does the child have a physical reaction that is happening every time they eat the food or do they think that there a reason why that a particular food is bad?  I know with hindsight that I can see the things that were missed when my son was a young child. Things that I brought up to doctors time and again that were dismissed due to his weight being good.
A local professional that has experience of ARFID would be wonderful, but if not do the parents have a doctor who is open to education. They can take articles to the doctor and educate them. 
I would encourage the parents to keep pushing for help. 
18 year old boy (Gluten Free/Dairy Free 2005)
 IP - March/April 2014.  ARFID.
 2015 - Gastroparisis
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meadow
Hi, thank you.

Toothfairy, Paeds A&E is a good idea actually (that's how we got the ball rolling with our daughter too, although her situation was very different). 
Deenl, thanks a lot for these resources.  I know that one of the parents already has the Tamar Chansky book, but I will recommend it to the other one.
Tali, good advice - will pass this on. 
Seaglass, really helpful also, and so sad to hear that your D struggled with this for so long before she could get help. 

Much appreciated.  Hoping for the best for these families.
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