Does this sound like ARFID?

[CylinderHead]

Posting here for traffic as I got no replies in the relevant topic.

Ds is 14, on the diagnosis pathway for ASD.
Since he was born he’s had issues with eating which have got worse as he’s got older.
Because he’s never been underweight I feel that we’ve been fobbed off for years as he has never met the criteria for referral for this issue.
He has gone through his life having a small core of acceptable foods, usually milk, one sort of cereal, chicken, steak, noodles, McDonald’s nuggets and chips and that’s about it. He will have transient favourites of different sorts of crisps, and will sometimes eat these with salami. As he’s got older he’s more willing to try things but generally doesn’t like them.
He will usually go a few months having the same thing (eg chicken wings every night) then will go off it and switch to something else for a few months, and that’s been the pattern for the last 12 years.
He was ill for all of January, some virus or other, drs saw him and weren’t concerned.
During this time he’s gone off everything apart from noodles, and even then he seems to have lost his appetite and is currently eating very little (noodles plus occasional crisps with salami, drinking milk but not as much as usual).
I’m waiting for another call back from the gp but they don’t seem fussed at all - he’ll be fine, no child starves themselves, he’s post viral and things will pick up (I do think this could be the case), but I have no idea how to get him eating again. Even safe staples like chicken wings make him feel sick to think about.
Any ideas? Would a referral actually do anything to help him? Is there anything I could add to milk to up his calories? I’m just feeling a bit lost with this at the moment.

Since I posted that the other day I spoke to a gp who said the post viral thing and said he’ll start to pick up in the next week or so. At what point do I start to worry? He’s barely eaten for nearly two weeks!

Anyone?

Yes it does. Ask for a full set of blood tests to check he’s not deficient in any vitamins etc as he might have to take supplements if he doesn’t have a varied diet. If he’s on the pathway for ASD, is he under Cahms? They would be best placed to help as it’s not that uncommon with ASD.
There are FB groups and charities that can help and will probably be more helpful than a GP.

Yes it does. If he drinks milk, do you think he may drink a flavoured fortified milk drink/shake to get his calorie intake up?

Yes it does

Teen DD was referred by the GP to a dietician for being underweight. She has issues with certain foods, textures, smells and has a low appetite permanently.

Essentially I was told to add cheese, cream, olive oil or butter to everything. Sneak it in if necessary. And nourishing shakes. DD won't eat butter or cream if she can taste it though.

Google nourishing shakes NHS and it brings up downloadable leaflets from various trusts. We were given one of these by the dietician and DD has one most days.

DD's favourite tots up to 500 calories a glass and includes full fat milk, skimmed milk powder, double cream, ice cream, chocolate powder and oreos blended together.
I make a jug full that will last two or three days.

It has definitely helped, but she has a break now and again so she doesn't go off it.

Hope your son's back on track soon.

Have you talked to him about the taste of foods since he has been unwell at all? After Covid infection taste was affected for several people in my family including some of the children. Mostly we couldn't taste much at all. There were lots of people at the time complaining that food tasted just awful though.

I lost my smell too for months which impacted on my sense of taste, I did smell training to get my smell back but the two are inter-linked so my taste improved too. Ask him about his smell too.

You could try smell training and then adapt it to taste training just to get him to taste some previously safe food items but not push it just offer, praising tasting even if not fully eating. If he is reward focused and very averse to even trying a taste he could earn tasting points towards something he likes. This has worked before for us to get autistic DS to try new things in the past but every child is different so may not work for you.

https://abscent.org.uk/learn-us/smell-training/how-smell-train/

I have no immediate experience with ARFID but my dd has anorexia and I really find it unbelievable that your GP said no child starves themself. That is literally the definition of restrictive eating disorders and to me is a big red flag that the doctor really knows next to nothing about eating disorders . ARFID and anorexia are different in many respects but the inability to nourish themselves is common to both. Please absolutely trust your own instincts on this - sadly the healthcare professionals are often not up to date and as parents we have to fight hard to get the treatment our kids need. I'd suggest looking up the FEAST eating disorder forum which is hugely supportive for families tackling EDs of all kinds and has a great range of resources and information.

I hadn’t thought of FB groups! I’ll go and have a look.

I’ve avoided camhs as much as possible as they are dreadful round here. My older dc had input with them (also ASD) and they made things much worse.

He does take a multivitamin regularly but I will ask the gp.

I’m going to talk to him about this. I’ve learnt not to sneak anything past as he always knows and I don’t want to put him off milk.

I can’t sneak things into him as he doesn’t really eat anything that lends itself to hiding other things in it.

The milkshake looks good though, I’m definitely going to show him that and see if he’ll try it. Thank you.

We talked about this today, funnily enough!
He thinks his sense of smell is fine, but he’s out of the habit of eating, so eating anything is tricky.

Smell training sounds interesting, I’ll read that tomorrow, thank you.

That’s good that he’ll take a multivitamin. Will he drink flavoured milk? If so you could offer something like Sustagen, which has a range of flavours and isn’t very thick or lumpy.

It does seem to be misunderstood and just plain not heard of!

My dd had an eating disorder as a teen, thankfully now recovered, but it’s a scary place to be. I hope your dd is doing well.

Because ds saw his sister go through it he’s worried the same will happen to him, which is causing stress around it all, so we’re trying to be laid back about it and hide our stress.

He might consider chocolate, but he struggles with anything that is thicker than milk.
I’ll have a look for it, thank you.

My Dad is elderly and has been prescribed Aymes shakes for dietary supplementation by the dietician as he was malnourished and underweight. They are for age 6+. They do sachets in a box so you can trial flavours, the vanilla might be acceptable to your son. You add them to full fat milk. My Dad likes the chocolate one.

https://www.expresschemist.co.uk/aymes-shake-vanilla-7x57g-sachets.html?gl=1fn3xxu_upMQ..gsMQ..&gclid=CjwKCAiA2JG9BhAuEiwAHzf3pyLgWLkjOL3w033ucikgfUb1yRqNoSLSO5vTEjAHlgcU5Tegn0CtBoCCmYQAvD_BwE

He also liked Fortisip compact too (smaller volume to drink) suitable for age 3+.

Thank you @Choconuttolata

Just an idea - is it possible that if you mixed a chocolate-flavoured supplement into skim milk, it might end up a similar thickness to full cream?

That’s a good idea! I think I’ll buy small amounts of different types and give a few a go.