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 😭

It isn’t for a DC either ARFID who has the intake and presentation OP’s DS does.

Please understand that im not trying to be rude to you but what other solution is there for a child that cannot maintain their weight orally?

Solidarity here.

On the offchance it's something you haven't tried, have you tried altrajuice with squash added? It doesn't work with orange squash though for some reason.

We are in a similar position with an underweight child, though (possibly) related to physical health stuff, not ND. Sure had a NG tube for a few months and is more just about able to stay on the chart with a lot of effort, coaxing, unlimited treats, and the altrajuice.

Her record has been 24.5 hours without wee, but 18ish hrs are relatively common. It's bonkers. I feel like it should be more concerning to them than it seems to be!

Are you sure a year? That hasn’t been the case for any trusts for some time yet, especially in paediatrics (this is my job - the stats)

Therapy
more work with the dietician as it would seem very limited to date

Im so sorry that you understand how hard this is too 😭

This is what i was told

No it's not. You can be malnourished with normal blood tests.

Respectfully, you clearly have no idea about ARFID and autism.

We've been seeing the dietitian at the eating disorder service for 4 years. She's offered every supplement she can. The only other thing the service offers is a baking group run by OT that lasts for 6 weeks. Im not sure what therapy can make a child eat tbh. Not when the reasons are complex.

What will he eat or drink?

For fluid, have you tried loading his water or whatever he tolerates, with ice?

If my youngest is on a non eating kick (usually lasts about a week) I found that she'll drink but only if its ice cold. Nandos is a favorite because of the ice machine. The amount of times I've sat in there, not even ordered any food, just drinks because she'll eat the crushed ice.

Have you ever tried him with a hot drink like tea?

Have you tried letting him eat alone without anyone watching him? I'm autistic and eating in private is important to me. I also don't like anyone keeping track of what I've eaten.

Is OT provision part of your appeal? That way it can be more than 6 weeks. Not necessarily with the aim of getting DS to eat more but looking at OT, including sensory OT, more widely.

Blood tests don't show the whole story.
What is is heart rate like?
How does it change when he stands.
Look at MEEDS guidelines and see how many red flags he has. Then go to A&E.
I am sorry to be alarmist but cold hands, breathlessness etc implies his heart is struggling.
My DD had AN. She was 'fine' (according to services, not thin enough, normal bloods, didn't say she was ill (no shit she had AN)) until she wasnt and collapsed with a heart issue. Things go south very quickly with such a low intake. Once she collapsed we got care. Miraculously. The state of eating disorder services is outrageous.

The statistics you are looking at must be wrong because some do wait that long. I know someone whose DC has been waiting nearly a year and hasn’t had a date yet. Although there isn’t the urgency there is in OP’s case since their DC has an NG tube.

You can’t “therapy” the autism out of him. It doesn’t work like that. And frankly he doesn’t sound well enough right now for therapy.

There is no quick fix for this. He needs the feeding tube to take the pressure off him. Maybe in time he will begin eating a more normal diet. Maybe he won’t.

His bloods being normal has little to do with whether or not he needs a feeding tube. There are many reasons why a child may have normal bloods and still need a feeding tube. They may be a factor in the decision but no more so than his weight or ability to eat orally is.

Once he hits particular criteria (who knows what it is), then they'll probably rush him through as an urgent case, if he is still on the waiting list. The problem is their criteria for it being an emergency will be different from yours. Things either seem to move slowly or amazingly quickly with hospitals.

I never said you can!!

But child centric therapy with a specialism in autism CAN help with food issues.

No.

He needs the PEG to take the pressure off and to allow him to eat again without the worry. If he knows he's getting all his nutrients and calories, he can then start to explore food safely and without any stress.

Sympathies. If it’s any help where I am our pegs are going in quicker than this. Push for the initial surgical appt as once in system it’s easier.
Do the surgical team do outreach clinics locally to you? If that’s what you are waiting for if it all possible also offer to go to the children’s hospital if it means you get seen sooner.

It’s really difficult but de-escalating pressure about food/drink might help…

Euvolaemic means the assessing doctor didn’t think he was dehydrated.

What trust?

Ah I missed… the dietician supports the peg referral? Ignore me!

Have they tested for his phosphate levels?

My son also has ARFID and won't tolerate oral supplements and we also can't seem to get the help we need.

I also support a young adult with anorexia who recently got fast tracked to gastro for consideration of a feeding tube due to low phosphate causing arhythmia of the heart. It took a lot of fighting for them to test this as well as other things such as zinc, selenium etc.

There are cases where significant nutritional deficiencies should be treated as an emergency, and sadly I don't think ARFID is taken seriously enough with emergency medicine.

I won’t be saying as it has the potential to the family identifiable.