My daughter only eats pizza. AMA

[IThinkILikeThisLittleLight]

She has ARFID

Posting to give some insight into what life with ARFID is like

How have you got school to be so understanding/accommodating with her without a diagnosis? Has she managed to get an EHCP? My son's secondary school and all of the others round here don't do anything like that without a diagnosis - children are expected to just conform with the rest of the pupils and are given no "special treatment" like not having to do DT food technology, or having anything they deem as "unhealthy" in their lunch box.

Agreed.

Am happy to help people that are genuinely curious but am not interacting further with people who are just being obtuse

First of all, thank you for the post it seems impeccable timing for me personally with my current struggles. My DS (13) recently diagnosed with ASD. Very similar to your daughter, would eat a variety of foods until around the age of 2 or 3 then it gradually changed. I have tried many many times to get support, have attended various workshops, GP visits, endless food diaries, etc but we are going around in circles. I suspect (and have for awhile) he has ARFID but I simply cannot get the help he needs. It is now having a more detrimental impact on his well-being and mental health and I feel helpless. How did you go about getting a diagnosis and, in your experience, are there any other routes I could take to get the support he so desperately needs ?

If its any help, I used to know a girl who had a very restricted diet (thinking now she probably had some kind of a disorder) but who got to eat more foods once in her 30s.

I worked with her when she was 20 something and was astonished when she told me she only eats crisps and one particular kind of curry, nothing else. No vegetables, no fruit, no meat, no bread, nothing. I'm still occasionally in touch with her and I know she eats more or less "normal" now - 15 years later - her diet is not as extensive as most people's but definitely not only crisps and curry.

I really hope your DD gets better/ gets adjusted and leads a healthy and happy life.

They're a fantastic school.

They've helped with getting her counselling at school. They've helped with expediting her CAHMS referral and Autism assessment.
They've agreed to her not taking part in cooking.
She gets free school meals but obviously doesn't use them so they give me supermarket vouchers instead of her school dinner so I can buy her safe foods
They've got a room she can eat in at lunchtime alone if she wanted to, as the canteen overwhelms her, but she doesn't use it as she doesn't eat.

So I was a kid who only ate chips, cheese, nuts, cheese sandwiches, and (eventually) plain pizza for lunch/dinner. My parents tried really hard, if I tried new foods I'd gag. I would rather go hungry for days than try something new. I can't explain it but it was terrifying. My DSis and mum have autism so i wonder if its related, who knows.

The thing that shifted it for me was going to uni and realising I wanted to eat better to avoid getting a preventable illness. Without people around me urging me I found it more manageable to very very slowly try things. Cooking was really therapeutic as I could control texture. As my list if safe foods expanded it was easier to try new things.

I still have a few foods I'll never eat but I now eat a reasonable variety of fruits and veg and no one raises an eyebrow at me in restaurants.

@Mirabai I'm not missing any point. But you're missing quite a few. Assume you're just trolling now tbh.

Am happy to help people that are genuinely curious but am not interacting further with people who are just being obtuse

The poster is notorious for behaving like this on threads and I’ve reported her on this one.

And funny enough we’ve both described him or her as being obtuse.

Is there anything you would do differently if you could go back in time to avoid this situation?

My DD ate nothing except for the occasional banana until 18 months old. she was on the 1st percentile for weight and I was sustaining her nearly entirely on breast milk, which meant that I was underweight and felt like shit too. I did wonder if ARFID was where we were heading but she eats food now she is nearly 3, she doesn't even require any milk. I steadfastly have refused to allow her to taste any junk food or dairy milk or packaged food because I was so afraid she'd decide they were "safe foods" and she'd never eat whole foods. I am aware this is not a long term sustainable strategy though and she will end up trying nuggets and pizza eventually!

I'm so sorry to hear this.

She doesn't have a diagnosis because we would need to pay for one.

The GP agrees that on paper everything corresponds with ARFID but he can't diagnose and there's just not the services in our area to get help.

We're winging it, like many families.

You clearly think you would
choose the safe foods. You wouldn’t. You cannot possibly know what your safe foods would be, because you don’t have it. What you like eating now as a person without ARFID is irrelevant.

My daughter has a very restricted diet too - not as bad as some described on this thread though. She is attending a dietitian who has suggested ‘food chaining’ where we introduce new foods over a 36 step process. Have any of you tried this with your children that gave ARFID? Would love to know how others have got on.

Yeah, because you don't have ARFID.

I mean FFS just stop. This whole "well I wouldn't eat junk food if I had an earing disorder" superiority complex is ot helping anyone.

I steadfastly have refused to allow her to taste any junk food or dairy milk or packaged food because I was so afraid she'd decide they were "safe foods" and she'd never eat whole foods

It’s great that your DD was still eating enough of other foods that you could be steadfast. Not everyone has that choice.

I think the wisest info I've ever been given is from the therapist who diagnosed my dc which was ''good' calories are useless if your child can't actually eat enough to sustain themselves'

There's no point eating healthy foods if you die because you can only manage 500 cals a day or whatever as opposed to 1000 cals of 'junk'. it's the overall calorie intake that needs to take priority, not where they come from

I’m trying to imagine how it would feel to be a child with ARFID. Does your dd eat until she feels full or does she eat small amounts of food? How are her energy levels? I’m imagining they’d be normal as she gets calories and takes vitamins but I have CFS and still don’t understand how that works.

Many of them may have died. Failure to thrive was responsible for the death of a huge amount of children in the past. These children aren’t just picky it’s extremely serious. Thankfully medical intervention and fortified processed foods mean most can live healthily now.

The difference between ARFID and being a fussy eater is that a fussy eater will eat what they don't like in extremis. An ARFID sufferer will starve to death sooner than eat wrong foods and often vomits involuntarily if she tries to eat wrong foods.

This thread has been an eye opener--I'd never heard of arfid before. I now realise that a man( age 50) I worked with for ten years must've had this. No one ever saw him eat or drink anything ever. Not even water.
Little surprises me these days, but this has.

Is she worried about her future self given her diet?
Is she happy with things as they are or does she desperately wish she could overcome/not have this problem?

They would have died. For much of human history, a third of children didn't make their fifth birthday and a child who refused to eat would have become another infant death.

@IThinkILikeThisLittleLight
I know an adult that has it I think, although it’s never spoken about. They only eat toast, chicken and potatoes. Nothing else as far as I know.

The only positive to that is that it doesn’t look too odd to the casual observer. But it is highly regimented. They are middle aged and it’s never wavered. I didn’t understand it when I was younger.

I also worked with a painfully thin woman that only ate tinned fish and jacket potatoes every day - I don’t know for sure what else she may have had but I never saw sign of any other food. At the time I presumed anorexia but she devoured the food she ate in a way that anorexics don’t so I bet it was ARFID. she wouldn’t talk about it but just said it was “all she could have”.

So that’s at least 2 people that I have known I suspect, so it’s probably more common than people think.

It’s very interesting but also appreciate distressing too.

Don’t be ridiculous. I actually have an AI illness and I’m when really sick there are, for reasons different to the thread, only a few foods that I can stomach - plain rice, oatcakes and some veg. I wouldn’t choose those either. You get stuck with what you can cope with.

That’s why I was interested what feels safe to different people - obviously in my case the nausea has a physical basis - but it’s also about texture, taste, emotional response, reliability and repeatability etc and that is relatable to people with EDs.

I also have a son who is mildly ASD and although he doesn’t have these issues he has eaten the exactly same breakfast for the last 10 years and there some things he point blank won’t go anywhere near.

Does your daughter have other sensory difficulties, such as bright light, loud sounds, nylon labels in the necks of clothing?

@Mirabai - I’m not interested in anything you have to say and I stand by my comments regarding your nonsense on threads.