Struggling with severely underweight child, no urgency from medics

Yes I do accept that's probably likely to be the case
I'm adults but have actually seen some autistic adults do really well with it, just that it's really structured, predictable, and drops the 'demand' element.

Obviously it's not one size fits all... Just his presentation does sound very worrying but it sounds like there are no good options all around really. I'm adults because I just can't tolerate the risk with kids 😬
Honestly it sounds like they're waiting for him to get so bad he needs a medical admission, doesn't tolerate the NG, and then he can have the PEG on the surgical acute list

A shot in the dark

Do you have a pet at home ?

Or access to visit an animal rescue centre, petting zoo, stables (riding for disabled).
Dont have to ride, can just touch & talk & BE one with the animals.

Perhaps he can focus on the animals & take the focus off food.

Then the food issue may take second place

Some animals are very caring

Parents are told not to mess with safe foods whne you have a child with ARFID. The risk of losing a safe food is too high.

You're right it's not a given - but as he eats barely anything anyway, the last thing she wants is for him to eat even less.

@beaglescurleduplikebagels But it’s not a given that OPs child will have the reaction you do/did. As I said this is what I would try if it was my own child. I appreciate you think it wouldn’t work based on your experience.

A gastro specialist nurse told us to hide medicine in one of my daughters safe foods IN FRONT OF HER.

I explained to her why that was an absolutely terrible idea, and that we had a relationship based on trust and honesty, and I wasn't wrecking that and taking away and a safe food. She just said 'oh yes, I didn't think about that' 🙄.

She then made some even more horrifying suggestions which I won't repeat here, but like something out of the Victorian era. She's no longer involved with my child.

How am I generalising any more than you are with your advice to add cream and oil to things to increase calories?

All I know is that if someone had done that to me as a child, I would have gagged and refused to ever eat that thing again. OP's child is already on an incredibly limited diet - the last thing she needs is for him to refuse even more food because it no longer tastes "right".

Thats wonderful. What I shared helped us. I appreciate it’s different than your experience but perhaps it’s important to hear lots of options rather than just one?

I think you are generalising from your particular experience and believe it to be universal.

This doesn't work for children with autism - they need control and for their food to be safe. I have food issues alongside my own autism (luckily nothing like ARFID) and if someone added something to my food against my knowledge I would gag and spit it out and never touch it again.

Even as an adult I have stopped eating safe foods because a recipe has changed or because someone has changed an ingredient.

It helped recovery

Did what you were told work?

You could explain what you are doing in a passive way. “I’ve read if we wipe your plate with olive oil it will add a few calories without you having to eat anything new”. If you feel that’s a better approach? The issue I think is that when your calorie intake is so low you stop having enough to feel hungry or very much of anything.

The first step is really to get the calories in, in my opinion. I’m not a Dr, I do have a now adult child with restricted eating.

Just to say… i absolutely, totally, understand what you mean! With a child with complex needs, we are their first and last advocate. And out of hospital is always better than in hospital, unless it cannot be safely avoided. The tightrope, exactly that. And it takes everything out of you. Thinking of you mama, from someone who has been there (different scenario, but I could have written this post word for word).

Thanks for clarifying. Sounds like we agree they are both urgent. Sorry if I sounded sharp, it’s just sadly not well understood even in healthcare 😢

Sorry I didn't make myself clear. I do understand completely about the danger of aspiration. I have worked with children and adults at risk of aspiration. I don’t think they don’t require urgent treatment but neither do I think that your son should be considered less of a priority.

If I read correctly your son has lost 10 kg in three months. If waitlists continue as predicted, say in another 12 months how much will he have lost ???

I do hope you can get through this nightmare soon.

I really feel for you I was in this situation with mine when he was young - he did tolerate the NG though.

Would he tolerate a one off feed if they sedate him & take the tube out after.

If he's weak & very breathless he's prob very low on iron & B vitamins. That could be an emergency. They can sedate & give IV if needed. They may also be able to push the gastro team to get the PEG done sooner

I certainly had to take mine back to a&e repeatedly.

I'm really sorry I can't offer a solution. It's horrid to watch & so much misunderstanding about the condition . 'they will eat if they are hungry enough' etc.

You are doing brilliantly advocating for & fighting for him.

But many autistic children with eating disorders need control and can be black and white ie once they don’t trust you that is it. We were told never to dishonestly supplement my daughter’s food.

Yes but it can also be a way out. My advice is that you keep trying and believe that things can change profoundly for a child with a very restricted diet.

This is true, but in my experience a plate with grease on it isn’t perceived the same way. The food touches it and gets a little smear and a tiny smell/taste of it. Fingers picking up the food do the same. You leap over the can I make myself try it moment. Nobody reacts, there is no pressure or praise.

My BIL has an undiagnosed eating disorder but likely has ARFID and falls into the lacks interest category, and he also has medical cannabis for depression and anxiety, again likely to actually be undiagnosed autism.

It does not give him the munchies. Long term usage can also have paradoxical effects that actually reduce hunger in anyone who uses it.

I also don't think it is licensed for ARFID, but maybe I'm wrong on that one. It is usually for a medical condition that has no treatment options available or where 2 or more treatments have been given a try and failed.

Absolutely. This is clearly a massively urgent procedure for any kid that needs it. Or they wouldn’t need it. I really do think you should write to the ceo /complain as the lack of communication is appalling and so is the suggested waiting time.

I know you have good intentions but if you mess with an autistic child's safe foods, it's incredibly likely that they will stop eating it altogether - adding cream changes the flavour and texture, adding oil does the same.

Getting their hands mucky with food can again be a sensory nightmare.

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.