Parent of Young Person with ARFID (Avoidant Restrictive Food Intake Disorder)- AMA

[Verbena17]

Thinking this might too niche a subject for an AMA but could be quite useful as so many more children/people are being diagnosed with it & today marks the end of ARFID Awareness Week
Ask me anything…

@BobBobBobbing oh blimey! 6 pints is great!

Hi @Verbena17 , yes I suspect it’s very different when the problem is caused by a specific traumatic incident. From about age 8-10 we were able to reason with him and that helped a lot, although it still felt like we were taking the tiniest of steps forward, and there were plenty of setbacks.

I never sought any treatment for him - I never really thought of it. He was always active and growing albeit a bit slowly and he was a little underweight but he was meeting milestones etc. it was just stressful and hard work for me.

It’s good to read such a supportive thread!

@Whitacre thats the thing isn’t it - the time it takes to gain just tiny steps forward. And then when they have a setback, it takes what seems like forever to get back to that place.
I’m glad this AMA has been helpful. 😊

I’ve just been back and read all the posts since last night.

The comments about not being able to recognise hunger were interesting. Ds says he hardly ever feels hungry. Not that hunger made any difference really. He would always prefer to be hungry than to eat something he didn’t consider to be safe. When he was 3 we went on holiday to a self catering cottage for 2 weeks. I cooked a big batch of the only meal we could still all eat together (spag Bol) the day before we went-so there was enough for dinner on the first evening and I could put some in the freezer when we got there, for another dinner the second week. When we arrived the owner (who lived next door) showed us round and then the boys went outside to play while I prepared dinner. Ds2 had hardly eaten all day but when I called them in he refused to touch his dinner. I was really upset, thinking he’d stopped eating another safe meal. The second week I served up the second lot, trying not to appear anxious, and he tucked in straight away. I mentioned the fact that he’d refused it the week before and he said “But Jo [the cottage owner] cooked that”! He thought that she’d cooked it because she showed us round and then he’d gone out so he hadn’t seen me cooking it. I think that was when I realised how important it was that he trusted me, but not other people, and that was at least a useful realisation!

Talking of cookery lessons, that has helped him-he knew what had gone into the dish and he was able to leave out ingredients if he didn’t like the look/smell of them. We also had (limited!) success with growing vegetables. He’ll eat runner beans, lettuce and cress if we’ve grown them ourselves. Not in huge quantities but I’ll take even a little bit over nothing.

Sorry for the super-long post!

That reads funny-I mean it was important to ensure that he continued to trust me always. Sometimes DH would try to trick ds into eating something new, or push him really hard, and it infuriated me because it just made ds more anxious and I felt it eroded the trust.

@Whitacre yes - our holidays are always a bit stressful for the first night or two - until DS settles in but that’s his autism. The stress of a transition means he has to get used to being somewhere else, the less familiar smells and sights and sounds.

You’re right about trust as well. DS used to eat meals cooked by my mum as long as she didn’t touch his plate and would eat her banana cake and muffins etc but now, nothing. He won’t eat anything anyone other than me and sometimes DH has made. I say DH but tbh, he doesn’t cook - he can just about make noodles bless him.

I forgot also- he wouldn’t drink any milk at all from about 18 months but in the end we persuaded him to drink hot chocolate and I decided that was good enough! So he had it every day for years. He used a straw for it which made it easier for him to control (not very environmentally sound though 😳)

Gosh @Verbena17 , it must be very tiring for you! My DH is no cook either tbh. And he has diabetes so he has dietary restrictions too 😭. Sometimes I wish I had a wife who would do all this stuff for me!

@Whitacre yes - both of our kids had hot choccies every day with straws. Good way to get milk into them.

I fancy a hot chocolate now 😋

Hi. Can I ask you if this sounds like arfid?

DD is 6 years old and just not interested in food at all. I'm not too worried about variety. She eats a narrow range of food but they hit all the food groups but her portions are tiny, she eats extremely slowly, and it's a constant battle to get her to eat even things she likes. She is on the 0.4th centile for weight, (and uncharacteristically short for our family) and is definitely noticeably weaker than other kids of her age. The only thing she will eat voluntarily are sweeties kind of things, maoam, gummibears, etc and sometimes fruits though she is losing interest in fruits as well. She was born on the 75th centile but steadily fell and spent most of her first two years between the 9th and 25th and then at age 3 fell of that as well and has been below the 1sr centile since then. We've had all kinds of blood tests done and clinically there seems to be nothing wrong with her.

The GP, HV, pediatricians, etc just tell us to not worry as she is clinically healthy but I don't think it's normal to eat so little or to have no appetite whatsoever. Also the fact that she is so skinny and short and weak is starting to affect her self esteem.

If it is arfid what do we do next? Is there any help available? I've spoken to camhs who said she is too young for them to deal with and they only deal with traditional eating disorders such as anorexia and bulimia.

Hi @SunFlecks it depends which healthcare trust you come under and what they provide. Were CAMHS no help in signposting you anywhere at all?
Have you been in touch with your paeds community dietetic team? I would give them a call and explain and ask if anyone there has heard of ARFID. If yes, you could see if they will do a PARDI screening assessment.

You could also have a look on your trust’s eating disorder webpage and see what paediatric services they provide. If your own CAMHS/ED services don’t provide anything, there is something called the NHS Individual Request for Funding - you can apply for private Caren treatment outside of the NHS…..so something like private ARFID psychology service for example.
That might not be relevant but thought I’d mention in case.

Thank you very much for the prompt answer. I'll look into the things you mentioned.

Does it sound like arfid though? I'm still not ruling out that it might be anything physical. She chews all ther food for ages so ok wondering if there is some sort of obstruction to not let food go down easily. If it is arfid, is there any hope? Will it get worse? Will this make her more likely to develop another eating disorder later? Lots of questions and I know you might not have the answers but I'm throwing them out there in case you (or someone else) have.

So I obviously can’t say if it sounds like ARFID but the fact that your DD is chewing her food for a long time, that she’s dropped foods, she eats very small amounts, could quite possibly be something like ARFID.

However, have you had your DD checked for how much growth hormone she’s producing? And also the ‘hunger hormones’ (leptin & ghrelin) dictate hunger and that’s something you said she doesn’t feel. Might be worth checking out. With regards to the weakness - it could be low calorie intake (or low iron) related or something different, such as hypermobility (for example only). Those are things you could ask your GP/consultant to consider - if they haven’t.

Have you noticed how sensory seeking or sensory averse your DD is? Does she seem to present as neurotypical or neurodiverse?

Her centile seems very low and whilst you say she eats across the range of food groups, if she’s not taking an adequate amount, she could still be deficient, although her blood work was ok so that seems good.

Long term, the thing with ARFID (if your DD does have ARFID) is we as parents have to just take every day as it comes and try to be as flexible as possible.

The anxiety and lack of motivation to eat can be exhausting for parents with no let-up, due to needing the child to take adequate daily calories. It’s not easy but there will be good/better days. From my own experience, we have found that as DS has matured, he’s more able to reason and that’s how we have managed to increase a few of his safe foods.

Hi my dd is suffering at the moment with something which I think it might be this.
She's 19 4 months ago she got a flu type illness since then she has lost 2 and half stone. She's been Dr's they said she was in her normal weight limits and put her on anti depressants. She went because her hairs falling out and she is concerned about the weight she was nearly 12 stone and enjoyed food. Now she's hardly eating she's always been picky but no it's avoidance. She's started having panic attacks when she's planning what to eat. She's gone to a cabin in the lake district with 2 friends for a couple of days. She text me last night saying her heart was racing because she didn't know what she was going to eat. Ended up having super noodles.
I think she needs to go back to the Dr's soon and admit she's got issues with food before her weight goes down even more and she becomes really ill. But she said I told them and they said my weights fine. Any advice

Thanks
Sal

@Verbena17 Did you ever get to the point were your child ate nothing! My son has been eating 1 meal for nearly 12 months eats nothing else. All of a sudden 4 days ago he stopped eating this hes had nothing but milk since. It is like he cant touch the food. He doesnt eat any snacks at all. He only had the one safe food so completely at a loss. He is just under 4yrs and diagnosed ASD hes also non verbal. The stress snd worry now is second to none feel completely helpless. I have contacted his pead snd asked for her to call me but unsure when i will hear back and if theres anyone she can refer us on to at his age!

Hi @Onedayatatime13 because your DS is so little, I would ask your GP for a referral to either a local ARFID team (if he doesn’t have a diagnosis already) or a referral to either Great Ormond Street Eating clinic or the Evelina Hospital.

He will most likely be deficient in some nutrients and might need supplements. Your GP can help if they understand ARFID but it’s extremely tricky sometimes to get oral supplements into children who aren’t accepting foods.

My ds had many periods where his super high anxiety meant he couldn’t eat.
I can’t remember I mentioned it up thread but one Christmas when we were away (we go away for x as week every year), he had a really wobbly tooth. Because he was so anxious about it and wouldn’t pull it out, he stopped eating for three whole days. On day 4 (Boxing Day), he agreed to a piece of lemon cake, which actually took out his tooth and so he was fine to begin eating again.

So although he’s never just stopped eating completely for more than a few days, he has had many periods of reducing eating right down to one food item (and sometimes only hot chocolate when he was younger), until the source of anxiety had gone.

Is night anxiety something which could be a factor in your son’s refusals too, do you think?

The most monitoring/help we got wasn’t until a few years ago when our NHS trust began doing ARFID assessments after training from Great Ormond Street. It (and subsequent monitoring) was carried out by the Eating Disorder Outpatient Team and as far as I’m aware, they are still the only team in our county who provide assessment and continued care.

Feel free to PM me if you want to ask anything more specific.

One other thing to mention is that some hospitals have their own paediatric eating service. Because he’s only 4, you could call your health visiting team to ask how to get a referral to a service local to you or a referral to an ARFID team if there’s one near you. BEAT and the NHS also have general info on their websites.

Sorry @Onedayatatime13 there were a good few typos in my replies above but I can’t edit. Where it says ‘is night anxiety…’ I meant ‘is anxiety…’

Sorry if this is no use to you, but my friend's little boy is autistic and doesn't eat healthily due to sensory issues and tastes he doesn't like etc.
She told of a multi vitamin that works for her that is completely flavourless:
https://www.hollandandbarrett.com/shop/product/nutrigen-vitamixin-sprinkles-60033521
It is expensive though.

@Verbena17 thanks. Ive no idea there is definately a sensory element to it. But just no idea why he has suddenly just stopped eating completed. He ususally screams the place down when hes hungry and wants his pasta dish straight away but i feel the past few days he hasnt even seemed hungry and hasnt requested anything and doesnt seem bothered by not eating. He wont even look at food. GP adviced me to speak to his paediatrician i attempted to today but havent heard back @Startyabastard thanks but there is no chance we would get that down him he wont drink anything but milk and only from his bottle and he can taste that slightest bit of anything we try to add to it. Im at my wits end.

@Onedayatatime13 keep going with his milk - it’s full of micronutrients and will help fill him up. If he stops drinking that over the weekend, take him straight to A&E.

Not sure if he senses your worry for him but although it’s difficult to hide our worry, try to be really chilled about it all and very blasé.

In case he might accept these….
A bag of Maoam Joysticks has 552 calories.
A single box of Mikado have 381 calories.
A 175g bag of haribo has 598 cals.
A packet of Maryland cookies has 966 cals.

A 4xpack of white choc Bueno has 888 cals.

Even if it means he eats sweets, chocolate and milk for a few days, it means his muscles won’t be eating themselves! Do you think he might want any of those types of things? It literally doesn’t matter what he eats as long as he eats/drinks milk.

Have you travelled abroad with your son? If so, from what age and what issues did you have? Thank you.

Hi @Seelybee yes we went to France three times.
The first time he was a toddler and whilst very limited, he ate more in quantity & variety of items. So if I can remember about 17 years ago, he ate ice cream, brioche, croissants, pain au chocolat, bacon crisps & sausages and plain baguette.

Then when he was older (8) we did a city break in Carcassonne.
He ate choco shell type cereal from Lidl, MacDonalds, ice creams and baguette. It was definitely more difficult that time. He also had his 6th and final epileptic seizure on the way there on the motorway in his car seat! Having woken him early to get the Chunnel & it was too early for him to feel like eating, his low blood sugar caused it. Luckily we were just about to go past an Aire break stop, so we grabbed him out of his seat and laid him on the grass, until he came round. We were then able to go and buy choc chip brioche for him to get his glucose up.
He was fine for the rest of the trip but we just made sure he drank loads of milk and hot chocolate to prevent another one and gave him regular snacks.

The third time we went for 4 nights to Disney Paris, when he was 11. It was loads of brioche when in the park (see the theme? 😂). However, the one bonus was we booked a Golden Forest Room and so could get the lovely Golden Forest breakfast! He ate multiple pancakes with bacon and maple syrup and milk and he actually really enjoyed going up to the buffet on his own to get his food! Then in the afternoon, they gave you cakes for afternoon tea so if we were back, so he had that a couple of times. He had some bread rolls and plain pasta in the buffet and MacDonalds one night. I think he also did manage tea in Planet Hollywood -pizza I think.

So all in all our abroad hols weren’t too bad. It would be a lot harder now because he has become a more obsessive about where the food touches, who touches it and has really reduced the variety he eats.

Thank you for starting this thread - it has helped me feel much less alone. My DS (9) doesn't have a formal ARFID diagnosis but I'm certain he has it. Like others on this thread, he would rather starve than not eat his preferred foods. Dinner is an endless parade of take out from either McDonalds, Domino's or some kind of chicken fingers (not home cooked - he refuses that) and I have so much guilt over his unhealthy diet. For breakfast he will either eat store bought pancakes or toast and marmite. His school lunch comes home every day untouched unless I pack him leftover pizza. He will very rarely accept an apple, grapes or watermelon but that's about it for fruits and vegetables. He will happily gorge himself on snacks like goldfish crackers, cake, cookies etc. I am sick of the feeling that I am being judged for 'indulging his fussiness'. At other people's houses he will refuse to eat anything except snacks. He also has a really hard time falling asleep at night unless I give him melatonin. It's never been flagged at school as a concern, but I wonder whether he may be autistic. Does this sound like ARFID to you?