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 😭

I went on some Arfrid training as part of a parent carer forum, they were private OTs but so helpful. Message me if you like and I can send their details. Have you asked to be referred to the community learning disability team? They will be able to support.

So sorry you're going through this. If your ds will eat a hamburger patty then have you tried giving him one with a bit of minced chicken liver mixed in? It's a good way of disguising the taste, most kids won't notice even if it's as much as 50% liver. Liver is very high in vitamin A as well as iron in the most bioavailable form, it might really help with his deficiencies.

I suspect because they know they may have to admit him if they do those tests?

No OP, a paediatrician aren’t going to not perform a test because they don’t want to admit a child

I second taking him to a&e if he seems unwell. He must meet the metrics for malnourishment which I think is an emergency?

does he have a social worker? It would be good if they could be pushing for medical help also

you could try your local councillor / MP

Social worker is supportive but ultimately can't get involved in medical decisions. I thought about contacting MP but that would apply to them too

As a mum of 2DC with ASD and both flirted with ARFID my eldest more so than the youngest my heart is breaking for you. I say flirted as whilst the eldest was under the dietician and the diagnosis was floated several times ultimately she would eat at least one item of almost all the food groups and whilst her weight was low it was maintained orally. I researched ARFID as I'd never heard of it before and it terrified me that her very limited and restricted diet could get worse.
It sounds like you are trying all the advice I would have given so this is just ultimately a support post, sadly it's not a well known condition and you will likely get some replies here from those that think its just fussy eating but ignore those, you know the reality of ARFID.
All I can do is offer hugs, prayers and echo other PP that you need to politely and firmly make a nuisance of yourself chasing his appointment and not letting them forget about him as they will ultimately recognise you from your hello you ring that often!

What heart tests? There haven't been any

Look at Nice guidelines .. I just looked up.. Link below. There is a section on medical monitoring. You say he is unable to walk sometimes with mottled skin.
Phone. Your doctors surgery and see if you can get an urgent appointment or see nurse.
It sounds as though he is complex and under care very specialist service.
I don’t know his height or weight but the medical risks ate the same .. whether it’s anorexia or Arfrid. Link below. Best wishes

www.nice.org.uk/guidance/ng69/chapter/Recommendations#physical-health-assessment-monitoring-and-management-for-eating-disorders

Sorry the sitting BP test?

How come he has a social worker?

That sounds really scary. Have you seen the “‘myarfidlife” account on instagram? It is by a young girl with Arfid and autism and details her therapy and attempts to try foods.

it is sensible and informative.
I wondered if seeing another child discuss this might be helpful for your son if he has the ability to understand the benefits of a feeding tube?

Nosey aren't you? Because of his complex needs

I have thank you. Ive reached out to her and she's taken the time to message me. She's lovely 😊

https://theplumpantry.com/
When my daughter was struggling, we joined a group-coaching course with this lady. My daughter isn't autistic, but two of the other kids in our group were. It did cost and she's based in Australia, so it meant being up in the middle of the night one day a week for 2 months, but for us it was definitely worth it.

Sorry, only just seen your post specifying McDonald's. I know with arfid predictability is incredibly important for safe foods so simply offering a home cooked patty is unlikely to work. You can get powdered liver capsules but I'm guessing he wouldn't want to take them either.

What are the quantities he eats every day:

• How many nuggets?
• How many hamburgers?

If you take him to eat in McDs does he eat more in the restaurant or at home?

Surely it should be standing/ sitting

This place is very much Marmite. Definitely do your research before making any decisions about this.

My child has been offered a place here and we have refused for a vaguely linked issue. Her situation is very different as it's physical, not psychological though.

Some people find it to be life-changing, others find it authoritarian and psychologically damaging. Parents are not usually allowed to stay with their children and visiting hours are limited, for example.

Hamburgers he may only eat a couple of times a week. Between 6-9 nuggets every day. Eats more at home.

On the NG tube, is it the insertion DS wouldn’t cope with, having it in or both? Because if you think DS may be OK with it once it is inserted but that he won’t cope with the insertion, you could ask that they do it under sedation.

I don’t doubt you’ve already asked, but can the GP not refer you for ‘right to choose’ so that it goes on the private wait list instead?
Not all docs make it known but it is available!

Sending you lots of support, sounds like a very trying time for you. What a lucky lad to have such a wonderful Mum ⭐️

Specifically for vitamin d, it's possible to increase it without eating anything. Either direct sunlight or, in rainy UK, you can get special sun lamps that help the body produce vitamin d. https://www.medicalnewstoday.com/articles/sun-lamp

Hi OP

You're right that your MP can't get involved in medical decisions, but this sounds like a resource issue - they have already agreed to a PEG by the sounds of it, so this is more of a capacity issue and your MP might be able to help.

This probably isn't helpful, but my autistic DD with a very restricted diet (but not ARFID) loves frozen stuff - peas, strawberries, mango, even grapes. Discovered by accident when my older daughter bought frozen fruit to make smoothies. We always keep some frozen mango, peas and a few grapes in the freezer now.

Good luck, I hope you manage to get a PEG for him soon

Both 😭

NHS guidance is just guidance. My husband was meant to be seen within 18 weeks for his illness which has him housebound. It’s been 27 weeks and we don’t even have an appointment date. Never rely on the NHS meeting targets