Help with 6 year old not eating

[Summertimewoes]

I’ve posted in AIBU as I need as much traffic to get some help !

This is going to be very long - sorry !

My 6 year old dd had a near choking incident four months ago and since then has been barely eating .
She has an active phobia now of swallowing .
She lives off certain crisps, mini Oreos , vanilla ice cream , the cheese part of dairy Lea dunkers , one bite of waffle with Nutella per day , one or two pieces of pasta with ketchup .
If we are out in a cafe , she will eat some donut or some cake .
Sometimes before bed she is so hungry and will accept a chopped up banana- will only eat two pieces .
she will have two innocent smoothie and one Ella’s kitchen fruit pouch per day as well .

Backround is she was diagnosed with sensory processing disorder at age 5.
she’s on a private waiting list to assess for autism .
She is what you would call high functioning . Very bright in school, masks incredibly well , and Then can’t cope once we are at home .
School has seen no issues whatsoever up until June when she could no longer mask as she was so hungry all the time .

I’ve been to the gp three times , sent to children’s hospital to rule out any physical problems with swallowing ( none )
She attends OT for past 18 months for sensory regulation. ( private )
She Is seeing a child councilor ( private ) weekly but seeing no difference.
Gp has referred her to a dietitian and a psychologist but not sure how long we will be waiting .
I had been referred to a child psychologist - Public - who said there was nothing they could do - this is the HSE so our public healthcare system .
Ive emailed private psychologists who either are not taking on new patients or say she’s too complex .

Her OT thinks she is showing signs of PDA and is experiencing burn out.

Her behaviors are very difficult at the moment but we are doing low/no demand in the hope she will regulate and the eating will follow .

Here’s my question (after all that !)
Has anyone got any experience with this ? I can deal with the behavior ( just about ) but we are extremely worried about the eating . I’m not sure how she is surviving.
I’ve tried different approaches with food but maybe there’s something I havevt tried ?

Our healthcare system in Ireland is broken , no one knows what to do with her and we basically don’t know where to turn .
Gp mentioned Arfid so I’ve been researching a bit on that too .

Anything else I can do to encourage eating , get some help ?

I’m sorry you‘re all going through that.

Although I have a picky eater, it‘s not the same as your situation, so my idea may fall short. I was wondering if smoothies would work as a short term fix for the nutrition? I hide veg in mine, finely ground nuts (bakery aisle), avocado, oats, prunes. You could even add in vitamin tablets. If you have enough banana in there it’s pretty sweet, and berries turn it all pink. You could add honey, too.

You may even be able to freeze the mixture in ice lolly moulds, although I‘m not sure what the texture will be like as a solid.

Hoping someone will be along soon with a more long-term solution for you. Hugs.

Thank you ! Unfortunately we tried that . Even bought a new nutra bullet contraption and made milkshakes with her in the hope I could add stuff to it but she refuses any smoothie that’s not the innocent brand .
Although she was a picky eater before this , she would still eat huge portions of what she liked - bolognese, pesto pasta etc - we were actually worried about her weight at one stage as she ate such vast amounts .
Now she’s lost half a stone since end of April and I’d do anything to see her eat a bowl of pasta

Thanks for your reply ☺️

Does she help with cooking?

She might be more likely to eat something where she has seen what goes into it.

Interesting she eats mostly sugar based foods with varying textures.

As she eats cake then what about making a savoury cake with her? (Very popular in france).

A friend of mine had a very picky eater child. She made hidden veg pasta sauce (looked ketchup like and no lumps) and her son would eat it with shaped pasta pieces (peppa pig etc...)

I share your pain as mine has ARFID and received ASD (also high functioning, doing very well school, masking though challenging behaviours at home) diagnosis this year. Also operate a fairly low demand approach. Blood tests have shown nutritionally mine is doing fine even on restricted diet.

Mine wouldn't touch it but would yours eat soup? Cereal and porridge are favourites for us which also gets in lots of milk. Would she eat home baked cakes (thinking with fruit or veg hidden in them)? I recommend spatone for tasteless liquid iron (iron was on the low side but fine from blood test but I use this as I can't get any meat in)

Have you tried food chaining? We have slowly managed to introduce the odd new thing based on this extending foods and textures they are already comfortable with. The dietician has also said to us to focus on calories so can you up the things she will eat (smoothies etc) and gently work on extending what she will accept.

Good luck!

Have you been referred to speech and language therapist? This would be my next step. They can assess for any swallowing issues and also recommend food chaining plan. It can work very well in collaboration with OT.

Following this with interest OP as we are currently going through this with my 10yo SD except it was a sickness bug rather than a choking incident which started it all off.

She is eating hardly anything at all - 1.5 slices of toast for breakfast, then crisps and maybe a small chocolate bar for lunch, and then a few bits of beans on toast/chips and beans for dinner. Sometimes a small bit of sausage. But literally nothing else at all. She sips tiny bits of water through the day, I could only wish she'd have a smoothie or milkshake. She doesn't even drink squash anymore.

She has dropped so much weight - same timeline as you actually, since April - and same as your DD she was always a fussy eater to begin with and now she has cut out most of the small group of things she'd eat - eg. nuggets, ham sandwich.

The doctor hasn't been helpful and she is already in therapy once a week for anxiety issues but the food side of things is obviously the most worrying and I think she needs specialist help.

I really hope you can find a solution or at least a way to get her eating some more. I'm glad for your DD that at least she's getting some vitamins etc from her smoothies.

I tried with her helping and preparing but unfortunately she just didn’t eat it.
Also tried the hidden veg trick but she’s not eating sauces at the moment!
Havevt tried the cake option though so will definitely give that a try , thanks!

It’s hard Isn’t it .

Thank you I was wondering how to get iron in and had completely forgotten about spa tone ! Il get her some tomorrow.
Is there a flavorless one?

That’s great that yours eats porridge, I’d love to get even one food like that in to her with a bit of substance

Have read about food chaining so will work out some kind of a plan

Thanks so much for your experience

No we haven’t though I did mention to Gp. As I said the system is broken here in Ireland and it’s extremely hard even privately to access services .
I will mention again though , thank you !

Especially if she has a PDA profile my best advice is don’t let her see your worried, don’t put any pressure on her to eat at all and keep talk of food to a minimum.

Provide safe food for her, have other things available but not touching anything that is safe. Try to remove any pressure or expectation.

if your on Facebook there is a very good ARFID parent and carers support group.

It’s just so hard isn’t it . I hope your SD improves .
Thank you for your experience!

Has anyone suggested a speech and language referral? Not sure if this is cou try wide, but in our county speech and language run a swallow clinic and its been very helpful for some children.

Im sure you've tried this but as she'll have an Ella's pouch might she have some of the dinner type ones? I know there's a bolognese one.

Have you looked into ARFID and some of the techniques that can aid with that. Like food chaining.

www.beateatingdisorders.org.uk/get-information-and-support/about-eating-disorders/types/arfid/

Anythings worth a try!

Just follow a basic savoury cake recipe (eggs, flour, butter) then you basically put in what you want. Finely grated cheese. Micro chopped white onion (chop in a blender so no lumps!!). Yellow stuff that blends in basically!! It should still be very much cake texture and look just like cake but contain some nutrients!

Not the same situation as yours - but when my daughter had issues with food in the short term the advice was to just give her what you know she will eat (but in bigger portions if she is losing weight).
Stop all conversations about food and talk about something else during meals.
Take all the pressure off for now pending a referral.

Is there no other liquid easy to swallow things she will accept? Yoghurt? Soups??
Can she really tell the difference between the brands or is it simply what comes out of the Innocent bottle?
Will she eat more of the acceptable foods?

https://fromthelarder.co.uk/gluten-free-fairy-cakes/

Fairy cakes above are made with ground almonds, good for protein and calcium and there's plenty of eggs in there too, and butter for even more calories. I don't put in the full amount of sugar.

When DS was little I just rang around speech therapists till I found one who'd do private sessions. I'm in Ireland too.

The Mealtime hostage facebook group is a good source of support

Do you think the sensory issues are what caused the choking incident a few months ago?
some children really struggled with oral discrimination and tracking foods in their mouth, which can lead to choking.
If she’s showing PDA traits then the more you present food as a “demand” the more she’ll avoid.

I wonder whether her confidence might increase from building oral motor strength - sucking, blowing games, facial vibration, tough chew necklaces to practice chewing/having things in her mouth without fear of it being food, thick milkshakes or smoothies through those bendy curly straws.

If she associates food with a scary experience, it might be helpful to explore regulating activities before the offer of food and give lots and lots of choice, low fuss approach. Has your OT put together a sensory diet of heavy work activities? Has your daughter got a visual timetable in place?

I don't have any experience but might it be worth booking her in with a private dietitian even just to get better food into her that she will eat if she is eating so little they could at least advise a plan say a high fat/protein diet of foods she will accept ? That sounds really hard and your poor DD the poor little mite x

I have a child with ARFID, ASD and SPD. ARFID sounded likely to me with what you wrote. In all honesty, there isn’t really much available to treat or help. It’s mainly CBT and chaining foods to try to less restrictive.

There is a good Facebook group about ARFID that can advise you further with regards to what to go for an assessment depending upon where you live.

Posting in solidarity @Summertimewoes.

My 11 year old, currently mid-assessment for ASD, and Dyspraxia, diagnosed ADHD has had restricted food intake since age 3. We’ve now got to a reasonable intake over the course of a week but it’s Spag Bol (every 2nd night), interspersed with plain meat with rice and broccoli. Weetabix for breakfast, lunch is some grated cheese and a carrot during the hols/eeekend - at school he eats nothing. It’s taken since the end of the pandemic to get to this range. During lockdown he reduced his food down to boiled rice and raw carrots. He lost loads of weight and I was sick with worry myself.

Pre-pandemic we had worked to increase his range and I was surprised to find a reward chart worked here. I made a list of food up on the wall and he got a tick each time he tried one (even a mouthful) and a star when he’d tried something 3 times. His brother did it alongside which was encouraging. When they got 15 stars they each got an Alexa (massive motivation for them at the time!!). Bloody lockdown set us back a lot but it did improve again over the last couple of years. I can’t tell you how happy I was when he started eating fries (no potatoes at all before then), though he eats them sideways and never more than half a dozen.

Holiday mealtimes this year were extremely challenging and we try to keep it low demand but it’s really fucking hard.

I hope you have a breakthrough soon OP. I really feel for you

So sorry you’re in this situation.

We have the same.

do you know what ARFID is? My son has this. Maybe google this. And autism. Last year he had a choking incident as well and then he stoped eating, he lost a stone in weight. We paid privately at the London eating disorder clinic and he had CBT and they diagnosed him with ARFID. Since he’s out weight on - still eats a limited range of foods but he’s gone back to normal amounts now.

We found that they don’t treat younger children - most eating clinics under nhs are 8 plus or even older

I've been there too unfortunately, almost identical situation where my son witnessed me choking (unconscious, stopped breathing etc) and was terrified of swallowing after that. His weight plummeted, he's also autistic and we were very worried about him. Anything he ate took forever as he'd chew it until it was almost liquid...

CBT made a huge difference, he now eats much better and faster, although he still struggles a bit with certain foods but it's now completely manageable.

Good luck, is a horrible situation to be in.