Arfid - please help

TBH I don’t think the low pressure does necessarily lead to eating more, but it doesn’t lead to eating less either. And the main value is in reducing everyone’s anxiety around it all, and reducing the chance of things developing into an eating disorder. That was what the clinical psychologist was mainly warning me about. Good luck, it’s a long haul thing.

Well that’s good she doesn’t gag. She knows how to chew and to swallow. I would highly recommend trying this course: solidstarts.com/downloads/reverse-picky-eating-bundle/

it may not fix the ARFID but gives you a playbook of tips and tricks and fortification of meals and how to reduce the pressure. The woman who developed this course with dieticians, nutritionists and OTs had a son called Charlie who was below the lowest line on the growth chart and refused to eat by 18 months old. He’s now 7 and eating much better and overcoming his difficulties. If you can’t afford the course, they will give it to you for free if you email them and they offer support from trained staff too.

you can see his story here: www.instagram.com/s/aGlnaGxpZ2h0OjE4MDE4MjkxNzA2MzQ4ODI4?story_media_id=2737634282875121719&igshid=YmMyMTA2M2Y=

she also shares examples everyday of how she deals with her sons objections and trying new things and so on.

im sure it goes without saying that professional support would be Best but this might help while you wait for that. Also fortification - cream on her cereal, nut butter in porridge, butter on everything, roast veg in oil and then top with cheese. Optimise every mouthful.

Can you get some fortini or paedisure shakes. They will give her calories and nutrients and take the pressure off her slightly. There is also Fortijuice if she won't drink milkshakes.

Sounds like she may have some difficulties with interoception awareness. Intereoception is our eighth sense, that helps us identify our body sensations and homeostatic states. If your daughter does not get the body signal that she’s hungry, she will find it really challenging to be motivated to eat. Like you said, it’s like she’s already full and asking her to eat. How do you feel when you’re hungry? Where do you feel it in your body - growling stomach, weak muscles, distracted mind, shakey limbs? These bodily clues remind us or prompt us that it’s time to eat and those feelings then go away and we feel relief afterwards. For people who don’t register those feelings at all, or they are distorted and hard to unpick or recognise, eating can be extremely challenging because it all feels a bit pointless and especially if there are tastes/textures you dislike.

It might be worth looking into Interoception Awareness and having a consultation with a sensory OT who can support with an interoception programme (or look into Kelly Mahler resources online) as there are things you can do to help build interoception awareness.

I'm sorry but this is such an unhelpful sort of comment. Someone whose child is likely to have ARFID will already have tried all the "never fail" tried and tested tips like this. They're a long way down the path, and a million miles away, from a bit of "fussy eating".

ARFID cannot be cured by getting the child to help with cooking.

"Also no YouTube or TV etc. she needs to concentrate fully on "mealtime" so either eating as a family or you sat with her talking about your days etc"

This is very poor advice. Forget the rule book for "healthy" mealtimes. You are right to do whatever results in your daughter eating more over the longer term. We tell families to eat together and away from devices because the evidence shows that this is less likely to result in overeating. You have the opposite concern. Some children with arfid are more likely to eat more when they're distracted by something else.

I'm sorry; you must be beside yourself with worry. My youngest has arfid, but he eats his four safe foods in massive quantities, so has the opposite problem - that is, he's very overweight.

NHS dietetics were useless in our case. They have no specialist eating disorder knowledge whatsoever and can't implement psychological therapies to address arfid. CAMHS are a better bet, I'm told. We're still on the waiting list.

Sorry I can't be more help.

Can you afford to pay privately? I was diagnosed with ARFID as an adult and had some sessions with this therapist which really helped

selectiveeating.com/about-me/

WhoGotYourBlazer. The ARFID clinic at the Maudsley is a national CAMHS service, so they do see children and young people from all over the country. It just means getting funding agreed if you don't live within their catchment.

Speaking to them was great as they are ARFiD specific. Although Ds didn't make a huge amount of progress, talking to professionals that actually 'got it' and understood was amazing. I had been asking for help for years. And there just wasn't any at all. They didn't make us feel like it was our fault and they understood that these difficulties can lead to a really serious eating disorder, that it's not just a bit of fussy eating. Ds worked with a very experienced psychologist there.

As mentioned interoception can be a big thing in ARFID. Ds could not recognise signals for hunger. Or got them confused with feeling sick. So just wouldn't eat at all. Add on significant sensory issues as he is also autistic and it means very restricted intake.

I totally get how hard it is and how difficult it is to get help, hope you find the right support. 💐

Hi OP. I could have been your daughter when I was younger. I was in and out of the doctors and dieticians because I just didn't like eating. I never seemed to feel hungry and didn't see the point. I was so so so thin and weak at one point. Good news though, I'm nearly 40 and a healthy weight now and I eat regularly. I still don't really feel hunger, but I know I need to eat.

Things my parents did that helped me:

Allowed me to read at the table and put out plates of picky bits so I could graze whilst distracted. Would probably work with a film if your DD isn't a great reader.

Offered small amounts of food regularly in various situations. Going to the petrol station? Get a chocolate bar! Walking past the bakery? Would you like an iced bun?

Every trip out ever involved a nice cafe with toasted tea cakes or ice cream.

Allowed me to try things with no pressure and didn't apply pressure for me to finish foods. Basically made food a non issue, but a constant fixture in my life.

Things that didn't help: Being told repeatedly that I must be anorexic. Grandparents or school forcing me to sit at the table til I'd finished. This just resulted in me getting clever at hiding food.

I hope some of this helps!

Yes it’s all done at home. For most who need tube feeding it starts with a tube in the nose (Ng) to the stomach but in Ds case we went straight to tube into his stomach (peg) because we knew it wokld be long term and he wouldn’t tolerate NG

obviously though that is a last resort and only in extreme cases

I had a difficult time with my daughter when she was a child.

I found the way to get her to try things and eat a small portion was to indulge everything in miniature.

You can get tiny cups and saucers, tiny plates and knives and forks. I used a small sherry glass for apple juice. I'd serve the tiniest tea like a dolls tea party.

This was not so much that it over faced her and she'd eat.

Small nutritious portions seemed to work, not all the time but more forwards than backwards. I fed the bin less!

It may be something you've exhausted already but I only ask as I found it helpful with my DD and took way longer than we needed to to get to that point, have you tried putting the onus a little more onto her? I don't mean for a second making her responsible/guilty for not eating but putting it just slightly more under her control?

Eg, with DD I involved her, to an age appropriate degree, in thinking what we needed to aim for, such as one very small meal a day to start with, then two very small meals etc, and what she thought was the best way to get there, without any pressure or pushing, more just asking for her help and ideas. It's taken ages, I won't lie, but she was able to identify things I hadn't thought of or had taken in the wrong way, like that she'd only eat one specific brand and type of something because the texture was slightly different to the other brands and even other virtually identical types from the same brand, that I wouldn't have cottoned onto.

I naturally wanted to take all the pressure off DD and take charge of sorting it out myself so she didn't have to but giving her a tiny bit of control, coming up with the ideas to help me rather than feeling responsible for sorting herself out, seemed to help. Years later we've still only got to the point of her having about 5-6 different meals she can tolerate but it keeps her fed.

Definitely agree with letting her eat whatever she wants, whenever she wants. The first priority is to get the calories in and you can worry about variety and eating at the table down the line. I'm a teacher in a school for autistic children so have lots of experience with restrictive eating but admittedly haven't come across a child who's issue is volume of food.