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 😭

Miraculous since there's no proper guidance around how to treat ARFID because no one really knows.

Mostly just wanted to say keep going, you're doing great!

Mine sometimes wants to eat family style because of the option to try things without having to ask, but sometimes in the dark, in her room so no one is watching / monitoring her intake. It's like them finding it easier to talk on car journeys due to lower eye contact (the PP who said "turn and ask if they want anything" was making me squeak "No! Don't make eye contact!!" 😂)

In terms of drinking, sometimes if I hand her a drink whilst she's busy, she'll have some without thinking.

Mine's an adult now and is much better, but I remember the periods where we were down to literally roast potatoes and sweetcorn, or nothing but McDonald's fries for 6 weeks, and I cried when she ate a piece of pepper again (water! Vit C! Iron absorbtion!!! 😂) Good luck x

Does he fully understand the implications of the peg? My mum had one fitted in January after 5 weeks of the nasal feeding tube which is about as long as they can do. She pulled it out multiple times and had to be restrained which was awful to see.

She prefers the peg as it is much less invasive than the nasal tube but it has not been easy. On the one hand she has stable nutrition (she was just refusing to eat or drink prior) but she has had infections in the PEG site and often has loose stools which has not been comfortable. Hers was a life or death situation and it was basically done within a couple of days of a MDT decision.

If there are any other options to explore, I’d want to exhaust them before the PEG. It feels greyer for you OP as while your son is clearly not ok, there are at least some calories going in. What you’re going through is hard but the PEG is also hard. I’m very sorry you’re going through this.

This sounds so hard for you both. The only thing I wanted to suggest was this brand of flavorless vitamin powders that have been popping up on my fb. It's designed for people with ARFID.
https://lunaandeve.com/?gad_source=1&gad_campaignid=23938173727&gbraid=0AAAABCX8GFfAoWQPrl-2h5Dwxk0sWgPFS&gclid=CjwKCAjwwL_UBhAjEiwAEhuT5PzPxjyf87ATTvA0qjp9-wdEccIXqRoXDrY_jyiK8g1aWgy3zhZ-KBoC4mYQAvD_BwE

Absolutely none of your business! OP is on here for specific support/tips, not to provide her life story.

I can’t offer you anything but some genuine support and care.
That must be so stressful for you.
When you think that normally, food is one of our greatest pleasures in life, it must be so difficult.

I’m so sorry for you and if I lived near you, I’d come and help you in any way I could.

I haven't RTFT, but have read a lot. I have no help or advice to offer, but wanted you to know you are far from alone, sadly. I have worked in a specialist setting for autistic children, and 75% of them were exactly like this. Most ate several bland foods; two of them ate one food item only, and another two didn't really eat at all - one of them drank lots of milk, and the other one didn't. We used to be pleased if she had a few sips of drink all day at school. She didn't eat at home either. I don't know how some of them are still alive.

Is there any way might be able to get the operation privately, then discharged to the NHS for aftercare?

I strongly sympathise with the waiting bit. I desperately need a major operation and was meant to have an MRI in November, but am still on the waiting list for that (rang up to politely check last week). Then will have to wait for an appointment to discuss how dire it is. Then a referral to a different part of the country, a wait for exploratory surgery, and a long wait for the operation. I reckon it will take 3-5 years. For an essential body part that literally doesn't work any more.

I’d honestly just put a complaint in. Write to the chief exec of the hospital and cc the complaints email address. If you can’t even find out how long the wait is, you might not even be on the waiting list.

That sounds really stressful for you.

Does he eat at meals or just grazing the odd bite through the day? If he's having meals, can you try asking him to do one more bite? So when he says he's done really incentivise having one last bite of something. If he's consistently undereating his tummy will be small and if he has sensory sensitivity he may not like the feeling of being full. So having one more bite (just one) is a way to get a little more intake without it being too stressful/too much.

One of the tricky things with arfid, especially when the intake is very low, is that the body switches off hunger cues because sending them takes energy he doesn't have to spare. Which reinforces the lack of interest in food because he's lost the connection between eating and having energy to do stuff.

Also, maybe encourage him to rest for a bit after eating meals. If you are underweight/undereating eating can paradoxically make you feel more tired because digesting the food you do eat puts you into a further energy deficit before the energy from the food you did eat is available.

My son has complex medical issues. We’re not in the UK so I have no help on the timeline. There have been some comments about your decision to pursue this. I just wanted to share my perspective that it had been one of the best decisions I’ve made as a parent. I hope that your son is able to get the surgery much sooner than anticipated. It’s life changing to have that stress reduced.

OP it sounds really urgent and I'm really sorry. Have you looked at Poland? Spain maybe?. Countries with normal health care systems that actually help sick children. I'd be on the first plane, I'd find an interpreter. In Poland you'd manage to see the right specialist in a matter of days if not hours.
Once the peg was in.place the nhs would have to support you and it would force them to fast-trsck things.

I haven't RTFT but i work with YP with ARFID. Since you're open to CAMHS already, I assume they've discussed the usual behavioural approaches and linked you to BEAT's ARFID resources. One out there suggestion though - we had one patient where the primary factor in his ARFID and associated low weight was lack of appetite (rather than sensory issues or anxiety) and after psychology input didn't lead to significant improvements, the psychiatrist prescribed cyproheptadine - an antihistamine that stimulates appetite. His diet was still restricted but his calorie consumption increased enough for him to reach a safer centile. It would be off label so not sure if a doctor in your service would agree to it but perhaps worth discussing with your dietician - potentially a lower risk option than PEG feeding and a better long term outcome if it works for him

I've just remembered that these people were really helpful when I was trying to find out where my daughter was on a waiting list. They actually found me the contact details of the person who managed the list!

Care Opinion https://share.google/TiHCMlajGMBs0OSaE

I was only part way down your first post when I started thinking "why has no one suggested a PEG?" before, of course, seeing that is indeed the plan, but with barriers in the way. It honestly sounds like you are doing your absolute best to support him. It sounds like your local consultant has, from the terminology you described, pretty much begged for the PEG. It is so frustrating to be at the mercy of a distant hospital. If you do go for PALS etc, it would need addressing to the tertiary centre, as the local DGH will have no control over tertiary waiting times. It might be worth contacting the secretary of the gastroenterologist to whom you have been referred, and saying you would accept a late cancellation slot. Quite a lot of medical secretaries keep a list of those, to make sure that no slots are wasted.

what is his iron?

Hi OP, you sound like you are doing an absolutely amazing job and have explored every possible avenue to support your son.
My only experience is as a teacher in a special school, where many of the children have ARFID, some diagnosed and many not. It really is such a misunderstood condition, and it sounds like you have a really good understanding of what your son is experiencing and are advocating for him so well.
The only thing I would add is to check whether he receives DLA. If he doesn’t, it may be worth considering applying, as from what you have described, I would certainly look into whether he meets the criteria.
I know of two children who have PEGs because of their very restricted diets, and for both it has been life-changing. One of them now chooses an increasingly wide range of foods for his family to blend for him, and he has even started trying some foods orally that he previously wouldn’t have considered.
On a practical level, all I can suggest is to keep doing what you are doing and, whenever you have further concerns, take him back to hospital if that is manageable for him and his sensory needs. If you haven’t found the name of the secretary for the consultant who would operate to fit the peg, I would do this and make it clear that you would accept a short notice appointment. I know families that this has worked for.
You sound like such an amazing, supportive mum, and I really hope you get some answers and a positive resolution soon.

I just wanted to thank everyone who hss taken the time to post ideas, suggestions and empathy.

One of the hardest things about this is it feels so lonely. Friends kids of the same age have such vastly different lives and it really saddens me to see how different DS's life is and how much his ARFID limits his life.

I have friends and family but it's hard to articulate the constant vigilence and worry - and I dont want it to be all I talk about anyway 🙂

So thank you all 🩷

sending sympathy OP. As I'm not in the UK I can't advise on best steps, but I would also want a PEG tube at this point and can say that here it would be done, though it would be last resort. It would have been handled somewhat differently (there would have been a referral to specialist feeding therapy much earlier) but for a child with so little intake, a feeding tube is required to take the pressure off. Blood work doesn't tell the whole story.

For anyone interested there are multiple approaches to feeding therapy. I personally am not a fan of behaviorist approaches for autism related ARFID. Here you could get therapy either from a speech-language pathologist (best choice if there are oral motor difficulties) or an occupational therapist (particularly good for sensory difficulties). But you'd want them getting sufficient nutrition so there's no pressure in the therapy sessions.

a friend's child was admitted for intensive outpatient (day hospital) feeding therapy for less than this.

Does he understand the upkeep of a peg? My DM has one due to illness and they are restricting, need regular cleaning/maintenance eg daily and for the first 3 weeks after it was put in she had stabbing pains when she walked/moved and it needs to be rotated so it doesn’t get skin growing over it.
He is only 11 but was this made clear to him?
Also the fortisip can cause tummy upsets/diarrhea initially.

Have you tried every kind of ice lolly to improve fluid intake?

Apologies if you have, but I had a child who basically lived off mini milk ice lollies for weeks at the peak of her selective eating.

This sounds like interesting and useful advice.

Huge hug op this sounds so so hard.
wishing you all the best for your son xxx

Has your mum tried swapping to the vegan fortisip? It causes much less tummy issues

Not everyone has fortisip. There are lots of different feeds. Some don’t even have any prescribed feeds but have a blended diet.

There is not much you can do except maybe take him to emergency any time you feel concerned, even if it's every week. Multiple trips to emergency can trigger being pushed up the wait list. I know you have tried every food and drink so I have no suggestions there. Really, really feel for you. Both my children were ARFID due to ASD but it resolved on it's own by age 5 or so for both of them. It was some of the hardest years. You are a great mum!

Just to add that blood results are not necessarily a sign of stability - some people compensate right to the point of imminent mortality. It sounds like he is mostly amber flags on the MEED guidance, but he needs an ECG and standing BP/HR
The book 'Sick Enough' for emphasising the effects of malnourishment

I wondered if as your son is so underweight whether he may benefit from an inpatient stay on paediatrics for weight restoration
At a certain point of malnourishment eating disorder type cognitions occur, so therapies are more effective when delivered at a higher weight

I know you've said you don't want an NG but would a 10-14 day hospital admission involving being fed by NG be something you would ask about? He would be offered food or the calories via NG