My daughter only eats pizza. AMA

[IThinkILikeThisLittleLight]

She has ARFID

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

Do you ever see her branching out into other foods?

I've heard hypnotherapy can work for widening people's food choices in some disorders. Has she tried that, or would she?

You say she eats a lot of chocolate and carbs as well. Do you worry she lacks protein?

Does her diet seem to negatively impact her teeth?

Thank you! 😁

OP- I have this too, life is very hard for me. Now a 31 year old and if anything I’ve got even more restricted over the years. Just want you to know you’re not alone with this- so hard isn’t it and people just don’t understand.

What makes me sad is how little therapy seems to be available for this on the NHS even though it affects children's lives so much. The children's hospital my autistic children go to in the USA has an entire feeding disorders programme, outpatient and inpatient. I remember an article in the Guardian a few years ago where a British woman came to the USA for intensive feeding therapy for her DS as she hadn't been able to get help in London.

I do have to say that even the best treatment (multidisciplinary teams, no longer using behavioural approaches) doesn't typically get children eating a "normal" diet. They typically focus on just expanding the food list enough to avoid nutritional/caloric deficiencies.

The other trigger for feeding difficulties, by the way, is NICU stays, especially if the child needed a feeding tube. They can often need therapy to eat solids again.

ARFID is no joke; a friend's daughter had to go into inpatient treatment in hospital because she was eating so little.

My friend’s DC has ASD and probably ARFID. As you know it’s stressful for my friend and she is worried for DC’s health and upset when foods get removed from the safe list etc. How can I support my friend?

This thread has sent me down memory lane with my DC. From age 3 to about 7/8 he would only eat weetabix and chips and the occasional satsuma . That was it. It was horrendous. So stressful.

Around aged 9 he started to be influenced by his siblings food wise - he didn’t like being left out.

He slowly started asking for a ‘bite’ of his sister’s this or his brother’s that.

We also started discussing the health implications and he hated the dark circles under his eyes. That was a big motivator for him.

And now he can eat (almost) everything.

So there is hope.

.

Fussy eating and ARFID are different.

A fussy eater will manage to eat a little when hunger sets in - can be coxed around etc.

ARFID - so bloody terrified of eating that they will forfit eating - and some children genuinely end up needing to be tube fed because they'll die.

I think this post wins the thread prize for Most Spectacularly Missing The Point 🤣

I have a question for you, OP.

I think you said that it's your youngest child who has ARFID, and your older children don't. How do you manage it in terms of the food that you offer the youngest v the others? For example, if a child without ARFID dislikes the meal on offer, can they have "safe" foods instead, like their younger sibling? Do the older children understand it and do they ever feel it's "unfair" if they feel that their sibling gets to eat pizza or crisps or whatever whereas they don't?

It's something I find difficult to manage with my children. My oldest child doesn't have ARFID, as far as I'm aware, but certainly has issues around food and a very limited diet (he is autistic) and my youngest child seems to accept even fewer foods than he does, although we think she is neurotypical. It's hard to tell how much of it "copying" older sibling and I guess only time will tell. But I do find it tricky when we make accommodations for DC1 and then feel we have to allow the same for DC2 to be fair. (Ditto screen time!)

What is ARFID

orthorexia - a type of ARFID

I’m also in my 30s with ARFID. I have made significant progress with hypnotherapy, but it’s taken years and I still have to ‘fight’ the aversions everytime I eat outside of my ‘safe’ foods. It has been a lifetime of being accused of being a fussy eater and judgemental comments towards me and my parents.

Exactly the same for me re the judgement. I’ve tried a few therapies and nothing has worked but I have hope that one day something will

Hi! I’m autistic and while I’ve never been officially diagnosed with ARFID, I had a very limited diet until I was about 19 and even now my diet is what most people would consider very narrow. Growing up I would only eat chicken nuggets, pasta with tomato sauce (the right kind!) and cheese, and the occasional roast dinner- if I was emotionally prepared. What made the biggest difference to me was the combination of my autism diagnosis, anxiety medication and, to be completely honest, peer pressure.

Now I’m certainly not suggesting peer pressure as a technique, but instead offering a little hope that things can get easier for your DD, especially if she gets the right diagnoses and support. Ultimately I had to come to the decision to try new things by myself, usually without company since I didn’t have to act out my reactions or pretend to like anything, but through several years of trying new things I have now come to accept some stir fry, instant noodles, pizza, some sandwiches, different roast dinners, burgers, chips, chicken skewers, several raw vegetables and some cooked- that’s just off the top of my head. Everything is less stressful in chain restaurants and buying from the same brands and supermarkets as often as possible, and every new thing I try is a cause for celebration between me and my therapist, but I’m making progress!

It sounds like your DD has fantastic support both at home and amongst her friends when it comes to living with ARFID, and I think that’s the real foundation necessary for making things easier over time. I hope your DD can thrive living with ARFID, either through slowly increasing her diet or continuing to find ways to accommodate the things she can eat now- whichever way and however she is happiest! You sound like a fantastic mother to her, too 😀

Wow, that's tough! At least ARFID is now a recognised condition so hopefully you can get some help for her. Do, though. I still remember the shock waves when a young man died, having only eaten beans on toast for many years - I think it was some 10-15 years ago, so things will have moved on since then, but still, it's serious.

yeah that one is spectacularly bad.

it somehow reminded me of the worst supply chain days during the pandemic. Dd typically ate 4 slices a day or a very particular load of bread that came with 10 slices on a loaf. So one would get us through 2.5 days. I had so much trouble getting it. She wouldn’t eat it if had been frozen. I almost cried in the middle of the store one day when I found a recent restock with a long expiration date.

not finding it could have meant another doctor’s visit where her weight had dropped.

it’s gotten better as she has gotten older. Her list is slowly expanding, but it’s still very small and we do really struggle to get her enough calories.

I wouldn’t put money on that. It could have just been down to the food being cooked in a different oil. My son has the most amazing tastebuds 😝 and his sense of smell was at sniffer dog level. He could go into my spotlessly clean kitchen and be heaving from the door. No one else could smell anything but he could.

This is me! People with ARFID are often super tasters. I can taste (and smell) if something has been cooked in a different oil.

My 16 yo dd has anorexia and has just started seeing a boy, who from what dd describes appears to have ARFID and is medicated for bipolar. He also has extreme anxiety by the look of it, he can’t talk or look at me if not prepared but can breezily say hello if he is. I am thinking there’s a possibility he has autism.

It is going to quite difficult for him as now dd is not allowed over at other people’s houses for any length of time because she’s started restricting what she eats again so we are having to go in heavy or she will never shake this and due to how she is (she presents as having autism and PDA) she’s a tough one to treat. I am concerned about these two getting more serious tbh. For both of them. Dd influencing him or him influencing her and so forth.

Do you or anyone else on the thread with experience of EDs have any words of wisdom for me?

My dd has anorexia. She has never eaten a wide range of foods and was difficult to wean albeit nothing like some of these stories. But she was a bit of a one trick pony with a Greek yoghurt phase then a toast phase. She would only eat 3 meals and they had to be home made making eating out extremely difficult. I cried when she ate a chicken nugget for the first time as that meant I could at least take her to McDonald’s. Then when anorexia hit badly earlier this year she went back to eating 3 foods and 2 others about once a week. Luckily the 3 foods were quite balanced in terms of carbs and protein. Only eating these foods went on for several months. But at least she was eating if only in tiny quantities.

All food is food. Dd just needs to eat to live. It is the same with people with ARFID.

@MaidOfAle I have never seen anyone put into words how I feel so completely. Thank you!!!!!

Potatoes do my head in cause they are so inconsistent within the 1 bag.

Well done for your level of eating, it sounds like such a chore - I would give anything to eat normally as I'm sure you would too.

@SpiderGwen don't be too hard on yourself - you took the advice at the time of the dr. I at in my 40's and only heard about ARFID by accident in passing from a school mum whose daughter has it.

The special k thing, they are so different now o can't stand them but Sainsbury's own version tastes exactly the same as special k did 10 years ago. It's amazing!!! And a third of the price. Hate when my local store runs out.

I can eat broccoli if it's mashed with potato and grated cheese but that's now my only green veg. I will sometimes eat potato boiled if they don't smell earthy. Can't do fresh tomato any more only tinned plum ones chopped for pasta sauce (with olive oil and shallot).
I can have about 5 types of Garofalo brand pasta.
Always porridge for breakfast but it has to be Whites Organic oats with full fat milk and Sainsbury's honey. I sometimes only eat porridge throughout the day.
Lunch is a Sainsbury's ciabatta roll sliced up, half a Babybel, three slices of Morrisons Cheddar and some Philadelphia (only original, not low fat).
I only drink Copella cloudy apple juice and Clipper Everyday Organic tea.
I never ever eat out and never have done.
Same foods every day but I don't know if it counts as ARFID or not.

I really feel for you because in my experience this can be overcome, but it's a long road and honestly it's got to be her choice to recover.

It's very tough OP - I do think (as parent of an autistic child with eating disorder _) that as parents we have to persist in looking for solutions as while yes pizza has calories, it is not a nutrition rich diet.

While I realise you know this! I presume you wouldn't be on here starting a thread if you didn't want any comments about it.

I have a book - caled 'food refusal and avoidant eating in children including those on the autistic spectrum' ] by Gillian Harris and Elizabeth Shea that is helpful

also - Cognitive Behavioural Therapy and phobia therapy can both work with children - there are specialists who work with children on the autistic spectrum.

My daughter has some incrediby severe phobias that limit her life in many ways but would sound totally ridiculous if I described them - many are around eating/ food - we are working with a clinical psychologist at the moment although after 2 years of failing to get NHS help sadly we had to pay for this and its not cheap.

@Mummyoflittledragon thats a very difficult situation - like you I would not want to support or encourage that relationship in any way but not sure how realistic that is.

Do you know his parents? Perhaps you could get them on side that it is an unhealthy relationship.

OP, I’m also interested about the impact on your other children (I think you said you had three others, all of whom eat normally)? Do they get frustrated by the restrictions placed on them by their sister’s condition (e.g. not being able to eat out for their birthday or similar) or are they understanding? And how did / do you manage the “well DD is having pizza and crisps but you need to eat your broccoli and beef stew” situation? I appreciate if they are all teenagers or older it’s easier to explain to them but younger children may well not understand and find it really unfair.