Struggling with severely underweight child, no urgency from medics

Definitely don't do this!

Research has shown that this strategy actually causes children to eat less in the first place, in anticipation of the request. In someone with demand avoidance it may result that they reduce their intake.

Edit to say we are in Australia where we can face similar wait times. We asked for a PEG without trialling an NG tube and the surgeon was happy to do it. Our situation was different though as we already had a surgeon, gastro and dietician involved. It's a perfectly reasonable option. In the end he was given the choice between having 2 stomas or drinking elemental formula--we're very lucky he doesn't have AFRID as he chooses to drink elemental formula. Which tastes and smell like predigested vomit. He has II, autism and a whole raft of other diagnoses.

Someone upthread suggested mito as a potential dx. We've been through the mito diagnosis process (which ended up with a dx of maybe he has mito but not one we can currently dx. Cheers.) I'm not seeing anything in what you describe that sounds even remotely like mito.

I lead a NHS autism service (I realise this isn't the service you're having the issue with). Definitely ask your mp to ask when he will be seen, and also put in a complaint then escalate it. It shouldn't but these things do sometimes make us move someone up the list (because the chief exec makes us)

The squeaky wheel gets results. Keep calling up and annoying the secretaries. Some NHS consultants will respond to direct emails too - I’ve done this for myself.

I haven't read each and every reply, so sorry if this has already been mentioned, but some vitamins and minerals can be absorbed through the nasal mucosa, notably B vitamins and zinc, not sure if he'd tolerate these, but they were extremely effective when we used them for my husband's grandmother a few years ago.

And then I've seen transdermal patches of iron, vitamin D and possibly other vitamins / minerals, which I imagine would be easier to tolerate. One thing about iron deficiency is that it can exacerbate the lack of interest in food and sense of hunger. Not sure if you tested for B vitamins and zinc, but I would expect them to also be low with this diet.

Good luck!

Without dismissing your worries op, its good that you are getting food into him. 900 calories goes further than you think in a child, they carry far less fat & muscle than an adult

Whats his height centile & whats yours/DH? A low weighr/bmi can be relatively normal in a child who is short. I have an underweight child (growth issues, under endo and dietician) and while it can be scary seeing low centiles it isnt always a medical emergency.

Id be giving as many bowls of cheerios as he wants. Will he have milk with them?

Also will he eat any simple high calorie substances where you can get a lot in a single bite - peanit butter, nutella

There is so much poor advice on this thread with the best of intentions, from people who don’t understand arfid, or how the system works.

Unfortunately, you are a bit stuck, waiting for PEG. Are you on the ARFID facebook groups ? Beat run a group support course for parents of young people with ARFID.

I don’t think medical
cannabis is good for a lot of people
but honestly if this was my kid I’d probably be getting some mild edibles and trying to give them the munchies. Feeding tubes sound like a nightmare for a neurodivergent kid.

We use this approach for anxiety in our DS with SEN in other areas. It is really helpful and has been successful in some DCs with ARFID. I think if you are in this state it's worth a try. I know it's not just "picky eating" and it's an unfortunate title but it's about ARFID. I imagine some parents don't even know their child has it so wouldn't buy a book with that title.

amzn.eu/d/00XNTGUk

Yes, I don't know where you are, but my impression is UK paediatric services are probably quite poor compared to other developed countries. There are too many barriers in the way of seeing specialists and waits are too long.

A friend who is bringing up kids in Switzerland has had an experience much more like what you describe than what I've seen in the UK. It's frustrating.

Sorry if you've tried this but couldn't see it mentioned. You can get a vit D spray for the inside of the cheek and it absorbs that way. No need for eating or drinking, just one spray per day.

This post made me realise that you may be using a drive through - if your son is eating the patties on the way home with you distracted driving it may be more about the fact that no one is watching and the car being a safe space and with moving scenery etc. You could try some long car journeys …

Usually though, when I read posts about arfid I think it’s unlikely to be originally psychological and more about the gut bacteria not working properly and making kids feel hungry - but I don’t know how to fix that with restricted eating. I’d remove as much dairy as possible though as lots of autistic people have milk protein allergies and they do not have to show up as vomiting to be having a severe impact on body and mind. And I’d try to get some vegan yoghurt in if possible or pickles etc with the good bacteria (but from a non dairy source). I’m sorry that these ideas probably sound flippant, but they come from a concerned place.

I've tried these with my autistic DD and they can be quite strongly flavoured.

I’m shocked. I work in healthcare and children with eating disorders come to see me for other reasons. I had no idea this was how they prioritized. I would argue the other way around - how do I know?

My heart goes out to you.

Your suggestions don’t sound flippant, I get the worry about gut bacteria but I would be cautious about suggesting to restrict such an important food group as dairy when the OP needs to be increasing calories from anywhere.

Eating disorders are horrible.

I haven't read any replies or your updates so sorry if this is irrelevant.
If your in England have a look at the Maudsley Hospital. My autistic son was under them for his OCD, we live North of England but was worth it. They specialise in ED in children too. You'll potentially have to fight for a referral but dont be fobbed off if you feel it would be right for you as a family. https://slam.nhs.uk/service-detail/service/maudsley-centre-for-child-and-adolescent-eating-disorders-99/

You work in healthcare and don’t understand the extreme danger for children who can’t eat or drink without aspirating? I can’t say I’m totally surprised given the lack of awareness about dysphagia, but still.

(For the record I’m not arguing OP’s
child is lower priority, but suggesting that kids who end up repeatedly in intensive care just from having a sip of water aren’t a priority is just daft.)

It can be done faster when a medical need, every time you feel he’s dehydrated I’d present via ED for fluids and bloods. Tedious but hopefully it will expedite the process. Especially if you can attend the same hospital the surgery will be done at.
My daughter’s team decided she needed a gastrostomy on a Thursday afternoon and we had it done the following Monday as part of an inpatient stay. good luck and I hope you get the surgery he clearly needs as soon as possible

So your list of good is
McDonalds chicken nuggets
McDonalds hamburger patty
Cheerios
Salt & vinegar squares
Bourbon biscuits
chocolate oat milk
One of my children had similar issues. We are increasing our list weekly now but it’s been a long journey. I’d start by upping the calories in what you have. I teaspoon of double cream in the chocolate drink. Olive oil or melted butter on the plate the nuggets or burgers are served on. Boredom eating in the car or in front of the telly. Let his hands get mucky with a sludge of yoghurt or jam on the same plate as food. The smell and licking it off introduces the tase without having to make the choice to taste something.

I think this is very difficult for the OP because a squeeze of oil in a safe food could lead to that food being rejected from then on.

My experience is that although this can work for stabilising teens with anorexia, it tends to go pretty badly for kids with ARFID, especially if their ASD follows a PDA pattern. So it would be a last resort.