Struggling with severely underweight child, no urgency from medics

Yes I agree. It’s best not to flinch and be brave though and you won’t necessarily get a better result or any result if you only pursue a very conservative approach.

Anyway I don’t want to argue about it. OP is better served by hearing a range of approaches that worked for other people rather than any one approach being stated as gospel. It’s incredibly isolating raising a child with restrictive eating. In some ways much harder than other facets of disability. I don’t think we need to compete with each other.

After the discussion about add calories/don't add calories/don't try and fool the child I do highly recommend you try the SPACE approach I linked above.
It acknowledges that the child is anxious about food and doesn't try to conceal anything but also reassures the child that nothing bad will happen, even when there is a possibility of something they are currently very anxious about.
It's related to CBT but doesn't demand the child do anything, just reassures them.

@DinosaurJuiceForEveryone, I know you don’t want a medical admission but because there may be a time where it is essential and there will be one for the PEG insertion, it is worth thinking about what would make an admission easier for DS. Does DS have a hospital passport or health passport? Have you checked if the two hospitals DS is under have a learning disability liaison nurse, a learning disability and autism liaison nurse or an autism liaison nurse? Even if the hospital only has an LD nurse, even if DS doesn’t have an LD, they will often support those with complex needs who don’t have an LD diagnosis.

Fortifying foods, either overly or covertly, can work for some, but it is a very risky strategy to try for a child who has ARFID, is severely underweight and waiting for a gastrostomy because for some it can make things worse. It isn’t just a matter of being brave. I say that as the mother of 2 DC who have gastrostomies (one who only has overnight top up feeds and one who rarely eats anything orally) who does fortify food so I’m not against it in the right situation for the right child/adult.

No it is different with eating disorders they do have to be seen with 4 weeks, as the deteration is very dangerous for people that aren't eating. Thier illness gets more ingrained the longer you leave it and the body can shut down so it's not like someone waiting for a knee op for example.

Quorn chicken nuggets cooked in an air fryer look and taste exactly like McDonald’s ones. Might be helpful to always be able to offer them at home instead of from McDonald’s. They’re also much cheaper and can be bought in bulk for your freezer.

You have my sympathy and solidarity. My autistic daughter is also painfully thin and vegan with ARFID. Luckily she will take all the supplements we want her to (it was the criteria we set when she asked to go vegan and she’s never complained although it’s helpful they are gummies and taste nice!). I honestly don’t care what she eats as long as it’s calories in. She has 3-4 good nutritious meals that she will eat all of and that’s our saving grace at the moment.

I am convinced that a large proportion of teen girls with eating disorders from the 80s and 90s were actually autistic but undiagnosed/supported.

Former fat person here: smother everything you feed him in oil or butter. Is there a sweet treat he likes e.g. cookie or Mars bars you can feed him daily? Orange juice? Full fat milk?

Yes I’d also be cautious to restrict a whole food group too but you’d see enough difference in appetite increasing in just a few days if it is a milk protein allergy to know whether it’s worth continuing.

Is he pretty much house bound through lack of energy? Not going to school; no sport; no playing?

Sadly a contributing factor will be that because he is so sedentary that he won’t be building up an appetite at all.

I know I've posted about this twice up thread but please do consider the SPACE method as anything that even slightly decreases anxiety could help your DS.

Would DS be open to using a wheelchair or SN buggy for when he gets too tired to continue walking? That might help him get out of the house, even briefly, without being left completely exhausted.

What would DS think to suppositories while waiting for the PEG?

Check if either of the hospitals have their own version of a hospital passport. If they do, instead/as well as the one you have made yourself, use that. Not that you aren’t capable of making one, but staff will know what to look for and it is more likely to catch their eye.

Alongside my DSs’ hospital passports I have a summary document for when we see a new professional. I find this helps not because I don’t have to constantly repeat the same things. It covers:
DS’s name, address, DOB, contact number, NHS number, hospital numbers
Names of all professionals involved, speciality, hospital (where applicable), phone number, email, diagnoses, medication, allergies and adverse reactions, up to date height/weight, brief summary of notable medical history.

A few tips for hospital admissions:

• My DSs have a cubicle for medical reasons, but even without needing a cubicle for medical reasons, where possible (its not always possible without there being a medical need), because of their other additional needs one would be necessary even without those medical reasons. This is for the benefit of DSs, staff and other patients/parents. I think your DS would be better with a cubicle too.
• Insist staff read the passport before engaging with DS. You would be surprised how many don’t.
• Would your DS benefit from a visit beforehand? If so, you could request a visit to the ward/theatre/theatre admissions (if DS will go there) and to meet some of the staff.
• Request to arrive at a slightly different time to others arriving for theatre. It avoids the busyness.
• Request to be first on theatre list if possible. Not always possible, but worth asking.
• Think about whether DS needs a specialist bed in hospital or whether a normal hospital bed is OK.
• Pyjama fairies. Much nicer gown than the hospital’s own. Can be tailored to DS’s interests which can be easier DC, a distraction and a talking point.
• For blood tests think about what works for DS best. Some find emla cream/ametop gel best. Others find it adds to the distress because it builds anticipation. Some find the spray works better. Some can’t cope with that because of the sensory experience. Some find a buzzy best.
• If DS can tolerate the feel, adhesive remover can be brilliant. It makes our lives so much easier.
• Depending on how well DS can communicate, have a look at the paediatric pain profile.
• Pack snacks for you. More than you think. Then if you can’t leave DS’s side, you have something.
• Pack power bank, extra long charger, headphones/earphones, ear plugs, eye mask, hand cream.
• More spare clothes for DS than you think you will need.
• If DS watches any shows/films, download some beforehand. Signal isn’t always brilliant in some hospitals.
• If DS is having a PEG, if appropriate for him, I would ask to swap to a button as soon as possible afterwards.
• Prepare for DS to feel bloated &/or nauseous afterwards.
• It is usually a few hours before meds can be given via the PEG.
• If DS tolerates vaseline/lip balm, get some in beforehand. Lips can dry out.
• Some people use covers for the PEG, one yoy have the date for the surgery, you might want to get a few to try.

I wouldn’t be so pessimistic about the surgery being 12 months in advance. Especially in paeds

I honestly wouldn’t expect you to be waiting anything like a full year for this. I really think a complaint/PALs letter and follow up phone call should get this sorted. Maybe during Covid, but I’d really expect this to be done quickly.

@inthequietofdawn’s post is brilliant. Don’t forget comfort and essentials like medications for you. AirPods or similar for you.

Definitely take all his normal meds (if any) and don’t let them take them off you. Be ready to offer to give normal meds when they can’t find his normal stuff in their pharmacy.

Sorry for all the typos in my pp. I promise I can string a coherent sentence together. I should proofread my posts.

One important point I didn’t note in my pp, if it is looking like DS may need to be admitted more urgently before an admission for the PEG insertion, pack a bag just in case you have an emergency admission. It is much easier to have a go bag to grab that you have packed in advance than need to pack quickly.

@inthequietofdawn knows her stuff.

Having a bag or even a good list really helps.

On our last two admissions, I got told off for having a webster pack with meds and then I was told off for not having a webster pack. Can't win. It's a very good idea to have your own meds.

Yes pain relief can be given via the PEG. If you are given a choice between a Chait or a MicKey, go for the MicKey, it's much easier to open

@DinosaurJuiceForEveryone Outrageous, it appears that, sadly, your son has fallen into a bureaucratic black hole and giving you a 12-month waitlist is a catastrophic failure of care given your child's rapid physical decline.

The following info, from google, is based on you having stated your son's weight has fallen below 0.4th percentile, his lethargy and breathlessness

When a child drops below the 0.4th percentile and presents with lethargy and breathlessness, this is no longer a psychiatric waitlist issue. It is an acute multi-system organ strain. The heart muscle shrinks in severe malnutrition, which explains his breathlessness while walking upstairs.

A mechanical issue (like aspiration) and a severe restrictive intake issue (like ARFID) result in the exact same medical end-point: starvation and impending organ failure. You must fight this "fobbing off" by shifting the argument from his diagnosis (ARFID) to his physical safety.

You do have options @DinosaurJuiceForEveryone you are already advocating for your son but now it's time to be really assertive with the clinicians involved in his care.

Involve PALS at the Tertiary Hospital Immediately
The Patient Advice and Liaison Service (PALS) exists to handle exactly this kind of institutional breakdown. They have the power to bypass secretaries and pull files directly from clinical leads.

Action: Look up the phone number and email for PALS at the tertiary (specialist) hospital, not your local one. Call them directly. If you get voicemail, follow up immediately with an urgent email.

What to say: Use the subject line: "URGENT: Clinical Safety Escalation – Severely Malnourished Autistic Child (<0.4th percentile) with ARFID."

The Content: State that his local hospital has formally put in writing that they cannot support him, leaving him with zero local medical safety net. State that he is showing active cardiovascular strain (breathless walking upstairs) and extreme lethargy.

The Demand: Ask PALS to immediately track down the referral from his last gastro appointment and flag it to the Clinical Director of Paediatric Gastroenterology for an expedited crisis review.

Force an ICB Independent Escalation

Since your local hospital and the tertiary hospital are failing to coordinate, the body that funds them—the Integrated Care Board (ICB)—must intervene.

Action: Google "[Your County/Area] Integrated Care Board complaints".

What to request: Contact their patient flight team or complaints officer.

Tell them: "My child has a legal right under the NHS Choice Framework to be seen within 18 weeks.

The local trust has stated in writing they cannot manage him, and the tertiary trust has a 12-month waitlist. Under the NHS Constitution, the ICB must find an alternative tertiary provider (such as another regional children’s hospital) that can safely treat my child immediately."

Challenge the Hospital with the "MEED Guidelines"

The NHS has strict, mandatory protocols called the Medical Emergencies in Eating Disorders (MEED) guidelines. These explicitly cover ARFID and are designed to prevent exactly what you are experiencing—malnourished children dying or deteriorating while waiting for care.

The Law: Under MEED, a child under the 0.4th percentile with cardiovascular symptoms (breathlessness, lethargy) is classified as "Red / High Risk".

The Mandate: The guidelines state that a "Red" patient must be admitted to an acute medical bed for stabilization and safe refeeding regardless of the waiting list.

How to use this: Email the gastro consultant’s secretary and copy in the PALS department.

State: "My son is under the 0.4th percentile and physically symptomatic. Under NHS MEED guidelines, he meets the criteria for high impending risk to life. Delaying surgical nutrition based on an ARFID diagnosis rather than physical risk violates national safety frameworks. If he collapses, this correspondence will be passed to the Coroner/Ombudsman."

Force an Emergency "Section 19" or Multi-Disciplinary Meeting (MDT)

Because his local hospital put in writing that they cannot support him, your son currently has no medical safety net.
The tertiary hospital cannot leave a child in a clinical vacuum.

Demand that his community paediatrician or GP calls the tertiary hospital's clinical lead to schedule an Emergency Multi-Disciplinary Team (MDT) meeting within 48 hours.

This meeting must include Paediatric Gastroenterology, Dietetics, and Child and Adolescent Mental Health Services (CAMHS).When they meet, they must answer this specific question:
"Since the local hospital cannot support him, and he is too physically unstable to survive a 12-month wait, what is the interim medical plan to keep him alive?"

Circumvent the Local Queue via "Right to Choose" or Out-of-Area Transfers

If that specific tertiary hospital’s surgical queue is completely blocked, the system must pay to send him somewhere else.

Contact your local Integrated Care Board (ICB) complaints team immediately.

Tell them: "The regional tertiary center is refusing to provide an 18-week pathway for a starving child due to wait times.

I am exercising my right under the NHS Constitution to request an Out-of-Area Tertiary Referral to another major children's hospital (e.g., Great Ormond Street, Alder Hey, Birmingham Children’s, etc.) that has the capacity to insert a PEG urgently."

Apologies for the length but I do hope it offers a way to escalate your concerns and get your son the care he needs.

Wishing you both all the best.

My 17 year old has ARFID and I’m sorry there’s been such a lack of understanding on this thread.

I’m mainly on here to say that in my area there are care coordinators for children who fulfil a certain criteria (here it is either in care/in an institution etc or out of education and unable to attend appointments). It may be worth checking if this is in your area as they may able to access extra support or help advocate for your son.

But also sending you my thoughts and virtual support. You are being very gracious. the well meaning advice on how to get them to eat more makes me want to scream at times - it’s very very complex with lack of appetite combined with sensory issues combined with anxiety combined with demand avoidance and in my child’s case also combined with substance misuse. Yes we’ve tried fortified shakes!!! They were vaguely tolerated a couple of times until then they weren’t.

I wish I could suggest anything else. I think maybe in your situation as your son is willing to have a peg I would look into getting it done privately and take out a loan or something.

Does he have any siblings @DinosaurJuiceForEveryone ? (Sorry if answered)

How are things @DinosaurJuiceForEveryone ? Has your son put on weight?

Is he spending most of his days in bed? Poor poppet. Do you have other children?