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 😭

Yes we do this already. Its because of this that his weight has moved slowly down the charts over the past 4 years rather than a sudden drastic loss. Thank you though, im sorry you've had this experience too.

How did they conclude muscle wastage?

But ultimately is his bloods are essentially normal… he isn’t going to be a priority sadly

I am so sorry that you are in this situation. I had a close friend with a PEG and it was quite literally a lifesaver. I guess though if it's not immediate life or death, there just is a long wait like with everything else on the NHS.

What’s the tribunal for? Has he ever attended school or
was it a horrible experience for him hence being withdrawn ?

Sorry it isn’t the MARSIPAN guidelines anymore. The guidance for managing EDs changed several years ago now and it is the medical emergencies in eating disorders guidelines.

What does he eat? I can’t help with the chivvying the DRs but managing till that happens might be a better focus. So what are the safe foods and when are they eaten.

Im not entirely sure? The consultant at our local hospital examined him 4 weeks ago, said he had dry mucous membranes, cold lower limbs and was unable to produce a urine sample. He also said he was euvolemic and that muscle wastage was noted. I presume from his physical examination?

If it’s just a matter of navigating bureaucracy, I have found that things never move quickly enough when it comes to our children. Even if you have money to push things along, there are still waits for specialty care that seem to last forever.

My advice is to be organized. Keep notes of every phone call and contact. The bureaucracy doesn’t really care about the chain of effort, but sometimes those notes can help you remember a sympathetic ear you found so that you can find them again.

But essentially just waved you off saying unconcerned?

is he having hypos etc due to low blood sugar? Keep a record of how often. Take samples of very dark urine to show the dehydration.

A PEG surgery is not something they will do lightly, it would be a last resort so they will probably only do when it becomes an emergency/life or death.

Give him anything that he will eat, even if its sugary or unhealthy

Yes... he made the peg referral and scheduled another outpatient review for 8 weeks time.

@Shatenoeuf we already give him unrestricted access to anything he will eat and have done for the past few years

I’m so sorry that you’re going through this. I have one with ARFID, although not quite as extreme.

Have you tried the Birmingham Foid Refusal Service? This was recommended to us quite late. By them then DC2 was old enough to refuse.

This Podcast might be helpful too as it talks about PDA and ARFID and is only 17 minutes long.

Can he cook too even if it’s just using an airfryer?

My DC with ARFID was extremely anxious about our main meal in the evening, often overwhelmingly so. The thing that we found that helped the most was giving them a budget and taking them to Iceland and letting them spend their budget on their own food.

So they would eat with us if everything was going well but if they were overwhelmed or anxious then they knew that they had food available that they could cook. So the pressure to eat what we cooked was immediately removed.

It did mean that I’d end up eating their portion for lunch the next day quite often but it also helped them to eat more overall and increased the range of food that they ate gradually.

Just wondering if they checked his Ferritin levels as there seems to be research coming out that there is a strong connection with low Ferritin and ND?

It wasnt for this medical issue, but my son needed medical help and was told a year for the initial consultation, 6 months with tests and specialists before signed up to surgery, 6 months to get surgery after that.

No sir, not good enough. The ringing and polite hell got the initial consultation moved up by 4 months and he had the surgery 2 months after that appointment almost to the day.

I remember getting a call from some form of higher secretary when the one I'd been ringing got sick of me. Said I had to understand they have a 6 month waiting list for urgent cases. I said I did understand, but their waiting list was their job and getting my son the treatment he needs is my job and 6 months simply was not good enough and I'd take it as high as I needed to. That phone call was on monday. On Wednesday I got a call booking an appointment in a catch up/overspill clinic that weekend.

Contact your MP.

Oh and good luck with the Tribunal. I don’t know of you’ve found the SN section yet but the lovely MNers in there are usually very knowledgeable and supportive with things like this

I did similar when my DF needed surgery. Rang 10 minutes before she was due to clock off every week and kept her talking. Appointment came through very quickly.

Ok so they seem to be taking seriously?

Will he take chewable sweet type vitamins? Or even swallow tablets? I know they're not strong enough and a drop in the ocean but at least its something. Sports drinks? Like Lucozade?

a PEG referral seems so extreme for a child who’s bloods are normal

Well yes and no. Looks like a routine referral if we need to wait 12 months+?

Ok, so his %m bmi being at 73 and falling IS ok?

I agree with this, they can do wonders sometimes.

I am so sorry you're going through this, btw, it must be terrifying

no it’s not “ok”

but a peg referral is extreme for a child who’s bloods are normal.

No 😭