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’s not for a child that doesn’t eat.
The risk of undereating are very serious, including cardiac issues.
’Bloods’ are not the all and all.

Absolutely OP i agree completely. This is not something your GP can or should be dealing with. Your boy clearly needs specialist help urgently. CAMS and especially eating disorders are absolutely dire and the government should be taken to task. I would be sending letters/emails/ calling as much as possible as would every other GP I know. It makes not an iota of difference.
My local high risk ED clinic is completely dietician run with no doctor or psychiatrist at all. Absolutely shameful. And puts children at huge risk.
I hope your boy gets some help ASAP

Another solidarity here. My son is the similar - born at 50th, and gradually dropped and dropped over the years and now at 2nd centile. NHS have been hopeless. We don't have an ARFID service here and because he has ' stabilised' at 2nd centile they don't give a shit. He's tiny! Like your son he has ARFID that means he has a lack of interest in eating. He hates being so small and its started to affect his ability to do active things and that upsets him. But he can't bring himself to eat.

You could try a sensory OT. We have had to pay privately as our referral to NHS sensory OT was rejected. Its very expensive and we have only just started so not sure yet if it will help. Our OT has a specialism in ARFID.

Birmingham food refusal service may be able to offer advice. They can do online appointments.

Ok I migut be going side way here but under the rigut to chose, you can ask to be seen by someone else.
I know it works quite for autism diagnosis, which means skipping very lengthy lines. They can be private rathe than just NHS
Could it work to find a surgeon who could fit his line?

Perhaps clutching at straws here but if he's intelligent can you appeal to his sense of logic?

Can you say you know he wants the PEG tube but that's not actually great for him and he will be waiting a long long time (a year or likely more). So eating some food is, annoyingly, the only option really. You could tell him (truthfully) that it's not actually that rare to dislike eating and drinking, and that plenty of adults are quite fussy about food, but that everyone has to get on and do it, just like they have to go to the toilet, have a shower, and other annoying things they don't really want to do etc.

You've also said he doesn't like being pressured which is understandable. So you could ask him if he'd like to try getting on with things himself, in return for not being "pestered". Maybe for a week or so. However he thinks it would work best, e.g. a tick chart and an alarm/reminder and he goes and eats and drinks something (either gets it himself or asks you to get it).

If it's not working, fine no pressure, you go back to what you're doing now. Just wondered if he's old enough to take on board that sorting his own eating, even though he doesn't like it, might be better than being nagged and will also mean he feels better and has more energy. If it doesn't work now, maybe it would when he's a bit older?

Apologies if it's a crap idea!

What is his heart rate like? Have they expressed any concerns or done any investigations?

There are 2 types of powders that can be mixed into food or drink. Paediatric seravit but this a) has to be prescribed and b) has a metallic taste.

Vitamixin is genuinely taste and smell neutral but it's also very pricey. Holland and Barrett sell it online.

In terms of plain calories there is a powder available called maxijul. You'll need this prescribed as well. It does have a slightly sweet taste though and makes foods sweeter.

The problem with mixing anything into his safe foods or liquids surreptitiously that it's very likely to change the flavour/appearance/taste. If he finds out (which he will) then you will lose both a safe food and his trust. If you do it with his knowledge then he possibly won't consent.

I'm not a dietitian, just a parent who went through this with one of my kids.

I am sorry to hear you are dealing with all of this op it sounds very hard.

I'm thinking you need to phone regularly to chase up the peg tube if you can. I know it's yet something else you have to do and I expect you already have a very long list but I suspect it will really make a difference. It shouldn't be the case that you have do this but it will likely get you seen sooner. You need to really emphasize just how much his low BMI is affecting his ability to do normal day to day activities. He's a child he should be able to go to the park and run around without you having to worry about lack of energy or his heart.

I really hope you are getting support too?

Take him to A&E if he is becoming very unwell through malnutrition.

As already suggested by pp - If you can contact the Birmingham Food Refusal Service they may be able to give you some advice,despite you not being in Birmingham (I'm assuming).
Dr Gillian Harris is a leading expert on Arfid in the UK and she and her team are very experienced.

You really need to fight your corner since no one else seems to be moving with any urgency.

I see some people have suggested social eating. The opposite helped us. Being allowed to eat alone in her room with her phone or a television for distraction was useful. Anything to take away the pressure.

God op thats horrendous why has thr gp not referred him to Camhs with eating disorders they have to be seen with 4 weeks on NHS guidance.

Oh OP, I have experience of every single thing you're going through. My child's ARFID was found to be linked to OCD (and ASD) and they're now being treated accordingly but it took about 2 years to access this. Keep on badgering your dietician. I'm sorry that you're also struggling with school absence. Please contact this group https://www.teamsquarepeg.co.uk/team-squarepeg

• they have a whole range of advisors, including lawyers, who are specialists in this area. I'm so sorry - it's a truly desperate situation and I know you will feel completely powerless - all I can say is that things did get better over time and into teenage hood 💐

Would he eat jelly? It's a way of getting him hydrated without having to drink a liquid

Thank you but this isnt a GP issue. Hes already under camhs, and specialist dietitian and has his eating disorder diagnosed. Its the surgical team/waiting list for the feeding tube thats the issue 😪

I'm so sorry, you must be out of your mind. I know you'll have tried any suggestions I can give, I'm sorry you're in such a desperate situation.

Ow apologies op I didn't realise. My dd had anorexia so I can empathise but I think ARFRID is even more misunderstood and sometimes harder to get help for. I'm so sorry you are going through this. To drop to. 4 centile is very worrying, what happens if you go to A&E and refuse to leave until he is helped? Do they just tell you to go away?

Its not a life threatening emergency at the moment believe it or not so I'd imagine they'd ask why we were there. They'd possibly fit an NG tube but we dont want that.

Im.sorry you know similar struggles with your dd. They are both difficult disorders to treat arent they. I hope your dd is doing ok

Have you spoken to the charity BEAT to gain advice and support?
My friend's child was similar and they went back and forth to the GP with little outcome. In the end she presented to A and E and her child was immediately admitted to their mental health ward. I was so shocked at how much she had to push to gain the right support. Please do speak to BEAT and I hope things improve 💐

What have they said about his heart @DinosaurJuiceForEveryone ?

That’s awful OP
i am a GP ( albeit in Southern Hemisphere) If he was my patient he would see nurses for a weekly weigh, sitting and standing BP and regular blood's. Has he had an ECG?
With any eating disorder then the key is to increase weight in order to help the brain make good decisions.
Can you book an urgent review with GP ?

Hes not had a sitting and standing BP only a sitting one. No ECG either. Possibly being cynical but I suspect because they know they may have to admit him if they do those tests? As ive already said no to NG they're saying not their problem then, it's up to the surgical team 😪

Your child is cold and doesn't urinate for 15 hours, he must be dehydrated. It's terrible they cant take it seriously. It seems to be a common thread with ED's that unless a child is collapsed they are left to it!! I wish you well, keep fighting, God bless x

Nothing. They got his bpm from the sitting blood pressure, said it was on the low end of normal but that would be mild dehydration and thats it 🙃

And in the heart tests they have performed… normal?