Struggling with severely underweight child, no urgency from medics

[DinosaurJuiceForEveryone]

11yo DS is autistic and has an eating disorder called ARFID. Im begging for help but no-one seems concerned.

When diagnosed 4 years ago he was between 25th - 50th centile for weight. Since then he has gradually slipped down the char until now hes off the bottom (below 0.4 centile).

Hes so weak and tired that 5 minutes at a park completely wipes him out. Hes breathless walking up the stairs. Because of the autism he struggles hugely with demands so I cant just tell him to eat/drink.

Though he does eat its very restrictive and every day there's a calorie deficit of 800-900 calories. He has several vitamin deficiencies but cant tolerate the oral supplements. We've attempted what feels like all supplement drink/shake options and he just gags and refuses them. Fljid kntake is a huge concern also - drinking around 500ml a day (can be less) is normal for him.

Dietitian said a few months ago that if things didn't improve he would need a feeding tube as the next step. DS wants this. He is excited to have pressure to eat and drink removed and wants to be healthier. It would mean medicines and supplements can be given through the tube also.

Hes been referred for a PEG but the waiting list is a minimum of 12 months.

Monitoring his intake, noticing cold extremities and mottled skin and trying to encourage without demanding are taking a huge toll on me. He is literally wasting away in front of my eyes. But because he is 'stable' (ha!) at home and not actively in organ failure it's apparently fine to just keep going.

Im so desperately worried for him but no-one seems to be taking it seriously 😭

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!

No, honestly we really do not want this at all. DS would shut down in this scenario and it would do more harm than good.

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