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 😭

Can the community dietician or GP make an urgent referral for bloods and weight loss

We've had bloods. Apart from deficiencies they're normal.

Have you tried contacting any eating disorder charities for support such as BEAT? They might have suggestions as to how to get your ds more help. I’d be so worried too, it sounds so scary. Is there a way you could pay privately to get him seen more quickly?

The dietitian should be fighting his corner. I would contact them as first step

@OneWildSloth we've had a look at private but it's difficult because of his complex needs and aftercare etc. There is nowhere in our area and travelling isn't really an option as we have other children to care for too

What deficiencies? Serious?

She supports the referral but ultimately it's the hospital/surgeons who decide on priority etc so her input is limited

How does he fare at school?

Surely a naso-gastric tube is a first step before a PEG?

Vitamin D and A and iron. Iron isnt too low and he will occasionally eat the patty from a hamburger so we've been offering those regularly but not a lot we can do for the others.

Like a lot of children with asd he has HUGE sensory issues and will not cope with a naso-gastric tube. The doctors we've seen have acknowledged this.

Do you know who if is he has been referred to? Ring their secretary. Every single week. Ask for cancellations. Tell them every week how worried you are. How much weight loss. What you tried to do but couldn't. Ask GP and dietician to write an expedite letter. Push, push and push again. Be polite, you appreciate they're busy but you're really worried and would like him seen asap. You may find your wait decreases dramatically.

I don’t know what I would do OP other than making GP appointments every week until they were sick of me

Hes not at school. We're waiting for tribunal next year

So all his bloods are essentially normal aside from low level deficiency in Vit D and A?

I know he is at be bottom end and that does warrant medical involvement but… fact is, the blood is a window into the soul! So if bloods no cause for concern, it’s unlikely
the medical professional will be acutely worried about him

Have a look at the MARSIPAN guidelines to help you push for support sooner. It would still be a wait, but if enteral feeds are required but DS cannot tolerate an NG tube while waiting, it is possible for the PEG to become more urgent and be prioritised.

I know you said travelling was difficult, but I would try to get a referral to a specialist ARFID service. Sometimes this can include some virtual appointments.

In terms of waiting for the Tribunal, have you requested an expedited hearing? And is alternative provision in place?

Oh right. So there’s a lot of background. What are you appealing for it to go to tribunal?

Ive tried this. The peg surgery needs to be done at a tertiary centre and local hospital consultant has put it in writing that they cannot support his needs. Ive emailed the tertiary hospital repeatedly to ask if the referral has been accepted and what the timeline is but have had no reply. We saw gsstro there last month and they've just said he won't get one anytime soon as the waiting list is huge.

Do you think this is relevant to his weight loss

Quite possibly

I know you have probably already resorted to this, but will he eat more calories if given unrestricted access to what are normally treats?

That is something that was hard for me to accept as a parent, but giving up on my ideas of nutrition and just accepting that any calorie is a good calorie helped immensely.

If he eats a hamburger patty, I would get him one every day if he wants. My daughter went through a multi year stint where she ate two meals both from restaurants. Whichever one she wanted, we went and got it. If we didn’t show up to pick it up for a couple of days, each restaurant got worried something was wrong.

capitulation got us through those scary years. Her diet is still not great and she is still thin, but she is healthier now as an older teen.

1. Get a lawyer. Even 1 letter, requesting all medical records, can make waiting list disappear. Get your lawyer request it.
2. Keep very detailed records. Of everything.
3. Remember, you can request another doctor's opinion.
4. Is a private care an option?

Right, I think you have to make a nuisance of yourself OP.

You have to be so annoying that it wastes more of their time to not treat your son than treating him.

Dont email the tertiary centre, ring them. Much harder to ignore a call. Ring the local consultant and ask them to send an expedite letter to the tertiary centre. Ring gastro at the tertiary centre and ask them too. Ask if they know who rhe surgery would be under.

Go to PALS. Make enough of a polite nuisance of yourself that they want to shut you up.

Yeah I guess this is the crux of the matter really. From my perspective his ability to do anything is drastically reduced as he has so little energy. Im watching him like a hawk - he regularly goes 15 hours without passing urine for example. The stress of monitoring his input and output is stressing me out beyond belief. While his bloods might not be too worrying his last appointment noted muscle wastage and that sounds scary to me.