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 😭

Not disagreeing but they actually taste pretty nice and have a good texture (some of the stuff my friend's LO was offered tasted awful and had a really horrible texture). I think you can get them in tesco now. Might be worth picking one up to try? 💐💐💐

Not trying to pressure you or anything, just hoping it might be helpful.

Alongside the manner you have posted on the thread, yes. I haven’t asked you to agree, but that is how it comes across.

I hope he is doing ok now x

Can you afford to go private at all? There are lots of different therapies that can make progress with ARFID, eg family based therapies and EDMR

https://www.thelondoncentre.co.uk/arfid-treatment/

Can you pay for one of those private drips every now and then? They do hydration and multivitamins

https://getadrip.com/iv-vitamin-drips/hydration-drip/

I think they're quite nice and id drink them but sadly I dont need extra calories! 😊

And I'm sure you might have tried this, but would he accept a bit of ensure mixed in to the chocolate oat milk he already drinks?

https://uk.ensure.abbott/nutrivigor/what-is-nutrivigor/

Does he socialise with other kids? Go on play dates or have friends over at dinner time?

Occasionally yeah.

Not sure where you are in the country but I wonder if you have heard of burseldon house at University Hospital Southampton. Its something to consider www.uhs.nhs.uk/for-visitors/southampton-childrens-hospital/childrens-services/bursledon-house/diagnosis-admissions-and-treatment

Has he tried drinking the shakes through an opaque straw, in a closed container, while holding his nose? Followed by water to rinse any taste/residue away? Or would he be willing to try them that way, do you think?

I wonder if you go to A&E with him “collapsing” from exhaustion? It’s a completely fresh set of eyes reviewing him in a more holistic way?

Probably not very helpful given what you’ve said about cold drinks and your DS’s safe food list, but we found adding fancy ice cream to the supplementary shakes made them much more palatable. Maybe try mixing it with the chocolate oat milk. We also added oils and butter to anything we could.

Watching TV or reading (and the associated dopamine fix) during meal times also helped with the stress around food.

It isn’t just DC with unsafe swallows who have PEGs.

If you read OP’s posts, her DS isn’t in school, she is waiting for Tribunal and her DS has been seen by the eating disorder service.

It isn’t rare for DC with ARFID to find the idea of enteral feeding positive. Some even find oral intake increases because the pressure has been lifted.

No. There are thought to be 3 main 'profiles' of ARFID and the one that he scores highest in is 'lack of interest'. So hes just not motivated to eat and drink, especially not ao.ething hes sniffed and dislikes.

Does he gag/vomit on food or just hate eating?

Mine responded to a strict 'diet sheet' of eating three times a day with five snacks. They liked it all being written down with 'rules' and helped decide what foods were on there. They gagged on some foods but all the diet sheet foods were okay. Got them out of a wheelchair and into a healthy weight.

Is an adult now and still hates eating but has a very rule-based approach and sticks with it.

Thank you i appreciate your reply

Unfortunately for whatever reason he can only tolerate really small amounts of fluid. He also doesn't eat anything 'wet' so adding oil and butter isnt possible either 😪

@DinosaurJuiceForEveryone
As a PP recommended please look at
The Birmingham Food Refusal Service
They worked with our daughter ( diagnosed ASD SPD and ARFID) as part of a documentary we appeared in. It’s not available to view now.
At the time they didn’t see people outside the Birmingham area do we couldn’t get a referral from our Paediatrician.

Any books by Dr Gillian Harris or Dr Liz Shea are highly recommended. They are excellent.
I know he’s not a teenager yet but this might be helpful. It’s dedicated to our daughter.

https://www.amazon.co.uk/Autistic-Teens-Avoidant-Eating-Workbook/dp/1787758591

And what happens? If he goes to a friend’s house over dinner time? Any change at all? And change when you have his friends over for
dinner?

Anyway he’d have full milk milkshakes ? Sorry I know you’ve probably thought of this.
So sorry you’re going through this it must be terrifying. My DS had what ended up being an undiagnosed gluten allergy in his early teens and lost tonnes of weight very quickly , I know exactly what you mean about watching them like a hawk. Hope you get a solution asap xx

I believe there are powders that you can add to food that are tasteless that just add calories?
I was doing a visit to a hospital and it was something the dietitian was giving to v v sick elderly patients who weren't eating well..... it just added calories - no supplements or anything.

I wonder if you got something like that - could you dip the hamburger and the nougats in that before he eats them?? He wouldn't taste them. Not a solution i know - but a stop gap?

Sorry I imagine your dietitian has probably already thought of this - but it was the first thing that came to my mind when I read this post.

Edited to add - OP I think you need to look after yourself first. This must be terribly mentally draining for you. I imagine the contant watching of him is also subconsciously also adding to all the anxieties around food (not that you can help that I dont think) Have you got any way to have a break for yourself in all this?

Its no different? He will either not eat there at all and wait until hes home, or if they eat his safe foods eg mcdonalds he will join in but generally eat less than he would at home

I know OP's child isn't technically anorexic but the trouble with eating disorders is that everything can hold up as normal until it doesn't, and then it all goes pear-shaped very quickly. My DD was admitted to inpatient care at 73%wfh and they put her in a wheelchair to conserve energy straight away. Generally the advice is to take them to A&E if they show any of the red flags in the MEED guidelines mentioned above, although I know that's hard on autistic kids.

I don't have experience with Arfid, but at that WFH I'd expect them to be much more urgent about treatment. OP, have you been on the eating disorders board? Good for moral support at the very least, even if our experience is not quite the same as yours.

My daughter’s safe list looked very similar at one point. Not McDonalds because she refuses it, but very similar food and style.

the strange thing we discovered was that she likes really strong flavors. Not spicy, strong. Truffle, pesto, really sharp cheese, garlic

mixed in with the ultra bland she now eats things like brie baked with heaps of jarred garlic and honey. Has to be jarred because it is consistent.

your mention of the salt and vinegar chips is what makes me bring this up.

I am also autistic and might have gotten an arfid diagnosis as a child if it had been available, though my eating was never as restrictive as DD’s. I just happen as an adult to crave these really intense foods. I do things like put vinegar in water and drink it. I drizzle truffle oil on popcorn. My fridge never has fewer than 3 cheeses and 4 jars of pickles. DD came to try all these strong flavored foods because she saw and smelled me eating them and wanted a bite. I never offered them to her.

again, might not help at all. But maybe get some truffle fries and see if he starts sniffing around.

This is so far out of the GP hands. People seem to equally hate us/think we're useless while still expecting us to be able to do everything.

We share all these frustrations but hospital waiting lists have nothing to do with us
I write so many expedite letters a week I could probably do another surgery in that time

My GP has been as supportive as they can but the reality is that other than sharing my frustration and writing to expedite appointments there isnt anything else they can do. When pur local hospital has said they are not equipped to deal with DS then the GP certaknly won't be - and thats not a dig at GP's, thats just saying that this needs specialist and surgical input which is obviously outside the scope of a GP.