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Recovery from ARFID

10 replies

HappiestCat · 31/08/2024 11:52

My DD has been diagnosed with ARFID (Avoidant/Restrictive Food Intake Disorder) and is under CAMHS for ongoing support.

Does anyone have any advice regarding progressing to eating relatively normally and also getting your child to take tablets?

OP posts:
HappiestCat · 31/08/2024 19:29

Bump.

OP posts:
Sonolanona · 31/08/2024 21:09

How old is she?
My (now adult) DD has ARFID..and has had her entire life from babyhood on.
Over the years she has been misdiagnosed, hospitalised, put in an eating disorders unit, tube fed, had a ton of mental health input (some of which did more harm than good) and finally is now probably the healthiest she has been.

But she wasn't correctly diagnosed until she was adult.. until then she was a 'picky eater' 'anorexic' etc etc .

What helped her most was being referred to a dietitian who GOT that she wasn't trying to starve herself, she simply cannot eat the vast majority of foods (she also has ADHD/ASD and huge sensory aversions). All the previous ones tried to make her eat 3 meals a day, and two snacks and it simply wasn't going to happen and simply made her more and more anxious . The good one recognised that it was couldn't not wouldn't.
Instead she found a prescribed supplement protein drink ..high calorie that is used both orally and for those who can't take any oral nutrition, that DD could manage and got her prescribed 4 a day, which meant she met her basic calorie needs, and anything else is a bonus... so the pressure was off. DD eats, tomatoes, runner beans, a little cheese, crackers and (weirdly) the occasional steak. Oh and noodles. Apples are the only fruit. That's pretty much it. Anything else is unlikely.
But now the pressure is off she can occasionally try other things. She allows herself to NOT eat out. Family meals when she's home... she can try or leave it totally and just eat her safe foods. Absolutely no pressure whatsoever. This has helped far more than any other approach. Her friends don't pressure her, her family don't pressure her... and it has really helped.

She's also on a fairly heavy duty anti anxiety medication (an antipsychotic) which usually makes people overweight.. it means she actually has a little appetite which she has never had.

Tablets... you can't force anyone unfortunately!

ARFID doesn't tend to go away in my (long...DD is 30) experience, but it can become less stressfull if you can manage expectations. DD is still underweight, and I think always will be, but she's much happier now that she and we have accepted that this is HER. It hasn't stopped her going to a good university and being in an amazing medical career and living life, but viewing it like any other long term medical condition, rather than something we had to fix was the key for her.
(I'm sorry if that's not the answer you wanted, but having lived 30 years of it I thought our experience might be helpful.. DD is well, and a lot happier than when everyone was trying to make her eat like typical people do) (She's also one of four and none of the others ever had any difficulties)

invisiblecat · 31/08/2024 21:14

I won't advise on eating as everyone with ARFID is an individual, but I managed to get my dd to learn how to swallow tablets. It took some practice with Smarties and Tic Tacs, and she got the hang of it fairly quickly.

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Trishthedish · 31/08/2024 21:22

One tip you can try with tablets put tablet in mouth, gulp of water, put tip of tongue on roof of mouth and a natural swallow reflex will kick in. Hope it works and good luck with the Arfid. I have a friend in Her 60’s who has it and she still struggles, but has survived, is a magnificent cook and neither of her children have food issues.

HappiestCat · 01/09/2024 11:23

She is seven and under CAMHS for anxiety and their eating disorder clinic.

A dietician did provide her with some nutritionally complete shakes but she wouldn’t drink them. She only drinks water.

We don’t pressure her with food but she seems to be doing that herself, probably because she wants to fit in with her friends more.

Sadly she doesn’t eat smarties or tictacs or any kind of sweet like that. It’s as if she has a fear of the tablet going in her mouth so even her natural reflex doesn’t seem enough. I’ll keep trying though.

OP posts:
LlamaNoDrama · 01/09/2024 11:31

Does anyone recover from ARFID? Sorry if that sounds negative but I don't know of anyone who fully has. most people can't even get any proper help let alone recover.

From a not at all bitter mum of an adult whose never had any help.

HappiestCat · 01/09/2024 11:41

Perhaps my title sounded a bit too ambitiously optimistic. I think I’m just hoping for a time in the future (many years away is fine) when mealtimes can be better.

CAMHS are doing exposure therapy sessions and she is under a sensory OT.

OP posts:
TravellingSpoon · 01/09/2024 12:06

Our journey with ARFID has been a rollercoaster since DS was born. We have had stable times and less stable times but imo its not something you recover from. We manage it, and I know my DS isnt as extreme as some people, but there are times when I have felt utterly helpless and like it was managing us.

I think the best thing that has happened is that I have changed my attitude to food. For example, I would be so anxious if all my DS wanted to eat was hobnobs for breakfast, or only raisins and babybels (his safe foods) for every meal. At our consultation with Gillian Harris she asked me why it matered, and when I couldnt explain it I realised I was using my own standards and that my stress about food made DS stressed about it. Another one was about having a 'main meal' at night. As I said, I know we are lucky, and although DS is underweight and always has been, he is maintaining now rather than losing. He has some consistent safe foods and we have lost some but he is doing okay. He is a grazer and so we embrace that. He did go through a stage of fortisips but we struggled with those. He had powders too (cant remember the name).

With regards tablets, we have struggled. He will put it in his mouth but really struggles swalowing it. He is better with liquids and because he takes daily medication these always come in luquids which I give him in a syringe.

TravellingSpoon · 01/09/2024 12:08

It does sound like you are etting some support OP, so hopefully this will help. We had to go private as ARFID is not supported by professionals if an individual has a DX of Autism in our area, It gives me the rage.

NoahsTortoise · 02/12/2024 20:11

Hi @HappiestCat, I was just wondering how your daughter is getting on?

My SS sounds like he's right where your DD was in September, with the CBT starting next week. How is she doing?

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