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 😭

Really? Ok

To those asking what he eats:

McDonalds chicken nuggets
McDonalds hamburger patty
Cheerios
Salt & vinegar squares
Bourbon biscuits

Those are things he tolerates daily. He will occasionally eat mcvitoes toasting waffles. That's literally it.

Food and drinks at room temperature only, not hot or cold. He will very occasionally have a very milky tea or coffee but will drink it lukewarm. Ooh except chocolate oat milk he has delm the fridge - but tiny sips. Less than 100ml.

I really appreciate the suggestions, just feel like we've tried most if not all 😪

Have you referenced the MEED guidelines with GP/consultant/dietitian? https://meed.org.uk/meed-risk-assessment/

Also try PALS?

Yes. If you are so insistent that waiting so long doesn’t happen then me saying where in the country there is at least one case makes that family more easily identifiable. It isn’t really relevant either. I was merely pointing out some do wait that long.

Thank you.

Yes - im not a medic but dry mucous membranes, cold lower limbs and inability to produce urine doesn't sound hydrated to me...

I note you said he has autism, have you ever been to a dentist? Would he let a dentist look in his mouth if you had an appointment? I ask because we've had local cases where children with SEND, usually ASD, have had such painful dental issues (abscess, decay etc..) that it's made it impossible for them to eat, only discovered retrospectively once treated, eating and drinking subsequently improved. Has that been ruled out?

i am not “insistent” about that. Don’t exaggerate

I’d do whatever I could to go private

I am not exaggerating. You made a point of saying it wasn’t the case in any trust despite the OP being told otherwise then proceeded to question me when I pointed out some do wait that long.

Therapy can be very successful for ASD children. It isn’t about ‘therapying’ the autism away. Ignorant comment.

The other option if he is showing signs of dehydration or is eating fewer than 500 calories per day is A&E.

My ASD DD spent most of her early years significantly underweight (0.4 centile and below). She also has ARFID but drinks fluid well. If your son can tolerate gummies there are some available for older patients to improve hydration (saw an advert). My DD wouldn't touch them but maybe helpful to you? Ice lollies work for my niece who also struggles to drink. My DD was in a buggy up to about 7 but really only due to her weight and exhaustion. You have got further with GP than we did but it is SO SO worrying, you must be beside yourself. I assume you allow full access to safe foods even though they are not "healthy". When your kid is this underweight you have a party when they eat a biscuit!

DD improved - I honestly don't know why - nothing we specifically did. She still has a hugely restrictive list of foods she will eat but as long as I cycle round the safe foods she will eat. She is adding safe foods now and then (but also losing the odd safe food :( ) What I will say is weve had other issues so it's not all smooth sailing but at least I worry less about her starving to death! She is 15 and also not in school.

Im so sorry your dd has been through this. Absolutely terrifying as a parent. Unfortunately it would appear that nothing will happen with ds until he is similarly unwell - I'm shocked that this is where we're at tbh. I really hope your dd is doing better now.

Thank you I agree

I made a point, indeed. In one post.

I was not “insistent”

and my question to you was simply the trust in question

I guess you have tried everything but has he tried any surprising food , spicy or unusual fruits or vegetables. If he eats bourbon biscuits will he eat chocolate? Does he tell you why he won't eat or can't eat different things or is it just a no or refusal to eat.

I think my DH grew up on custard as one thing he would eat! He did grow out of it eventually.

Wow!!! I’m the ignorant one!!! Bloody hell! 🙄 Try reading my whole post!

Best I can calculate he is eating between 900-1200 calories on any given day. Hence why the low weight isnt a dramatic loss, rather it's crept up so slowly that his centile has dropped and dropped. His weight has now been entirely static for around 5 months yet hes somehow grown taller in that time, which has reduced his bmi further.

I disagree. You were insistent. That was the intention of you asking what trust when which trust it is isn’t relevant.

Does he like milkshakes/milk products?

My friend's little girl was seriously underweight after a prolonged illness and she would accept milkshakes and eventually a meal replacement shake called yFood that comes in loads of flavours. The chocolate and banana ones were her faves.

He used to. We've tried so many different supplement shakes from the dietitian and he just can't tolerate them.

https://www.mumsnet.com/talk/eating_disorders/5559903-autistic-son-refusing-food-for-a-week-what-should-we-do?utm_campaign=thread&utm_medium=app_share this thread has some ideas and resources. I'm really sorry things are so difficult.

When my husband had radiothrapy for oral cancer (amazing NHS team), he needed a PEG but the oncology team asked if he could have it inserted privately (he had health insurance with work). It was the only bit he had done privately due to the waiting list. Is it possible to ask for the PEG surgery to be done privately (if it is feasible financially) as part of his current care if his doctor has been happy to refer to NHS team.

A PEG seems very drastic for a child who has a safe swallow and I fear you will have a long wait tbh. He will need a care plan in school, school staff will need training. Does he have an EHCP?
I am concerned your son wants to be tube fed. Can you approach your local CAMHS team for more support?

You think one short post and an enquiry as to what trust is “insistent”

okay