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 ?

OP, I probably won't be much help, but I had a near chocking incident as a child, although I was a bit older - probably 9 or 10. I didn't really have much sensory issues, although I suspect I do have ASD. I've always been a not very good eater even before then.

I had a massive fear of chocking, and I would take absolute ages to eat a meal because I had to psyche myself each time I had to swallow, even if it was liquid. I would often spit out food when no one was looking, especially if it was something like meat. I lost quite a bit of weight. My parents were not understanding in the slightest.

I did eventually grow out of it - I can't remember how long it lasted, but I think I was 11 or 12 by that time. There wasn't anything specific that helped, it was probably just exposure, having to do it day in and day out, so over time the fear has diminished. However, for you DD having a well educated compassionate parent is far more than I had - keep doing what you're doing, you are doing a great job.

My DC went through a phase of not eating due to a fear of vomiting. (About age 6/7.) We got to the point where she was refusing almost everything. She lost a lot of weight. Our GP was very understanding but there was little other support. We were advised to simply let her eat what she wanted, which was oreos and breadsticks. That was it for weeks and weeks.
I remember getting upset which upset her further and simply had to back off (going against all our instincts) We tried everything. In the end we just had to let her just get some calories in. Nutrition became secondary.

She slowly, and we're talking months, probably years, started to eat a slightly more nutritious selection.

She still has a limited diet. She's just left school and will eat 7 meals. That's it. However they do include fruit and vegetables. It's restrictive and can be a bit frustrating even now but that's part of her and she's happy and healthy.

I have a picky eater but not quite the same. We make flapjacks together ripe banana, massive amount of smooth peanut butter, oats and honey, cook in the pan for 20 minutes. Mix chocolate with a bit of cream to drizzle over the top. It’s doesn’t set hard it’s really easy to eat I cut into bite sized squares and they go as school snacks, leave a plate out in the kitchen or sitting room and she grabs one as she goes past. They are very easy to eat and more ish but also nutritionally dense, lots of fat and protien. Too easy to eat I have to have a lot of discipline or I’d look like a house.

I meant to say too, Low Demand Parenting is supposed to be a good book.

Thanks, this is what we were advised to do as the table was causing too much pressure .
It’s not working but she is enjoying a lot of tv 😐

I am very worried that she’s only eating crap . These became her safe foods when she didn’t eat any kind of food for nearly a week and only drank one smoothie and two fruit pouches per day .
Even to get her to where she is now has taken time and a multitude of different approaches

She has no problems playing with food , licking food. She will often ask for a “normal “ dinner like bolognese and then chew it until it’s basically water and then spit out

Thanks , that’s very helpful. It’s so hard like you say when we know so much about healthy eating and there’s nothing I can do!

Funnily enough , she used to love jelly sweets but won’t eat them now ( or won’t let her sister eat them in case she chokes) but will eat two sambucal gummies a day .

Yes I will look in to the iron and calcium supplements

I have a gp app on Monday so il mention again about an slt

Thank you

My son went through a long phase of this after he had a sickness bug. At one point he was living on a couple of mouthfuls of ice cream each day. We managed it using a couple of things. Firstly we had a food diary that we would right down everything that he ate - he would write them in and draw a picture of the food. Secondly when we were out and about I’d give him a sandwich to hold. He was so hungry he would inevitably end up taking small bites of the sandwich. Every time he tried to give us the sandwich back we redirected his attention. It wasn’t an easy process and took quite a while to overcome the challenges.

We also gave him unrestricted access to a cupboard filled with snacks - he was allowed to help himself without asking and I think that made him feel a bit more in control of the situation.

I’m so sorry OP, that sounds very hard.

I don’t have any advice on the therapeutic side and it sounds like you’re doing all you should be there.

In terms of upping her nutrients and calories here are some you could try:

Cake - would she eat carrot cake or courgette cake (especially if she doesn’t know what’s in them?). You can use the nutribullet to blend the carrot or courgette to a paste so they weren’t visible. You can also make cakes with sweet potato, there are recipes for things like sweet potato brownies online.

Muffins - attached is a recipe, these look bloody worthy from the ingredients list but they’re actually delicious and packed full of good things that even my picky 3yo doesn’t notice.

pancakes - would she eat these? If so you can make them with banana and ground almonds and that, along with the egg, is a good source of calories and vitamins

smoothies - would she notice the taste difference if you bought big bottles of innocent smoothies and blended some extra hidden fruit and veg into it (spinach, carrot etc) and then returned it to the bottle? If not then the smoothies are decent anyway so don’t worry too much.

Would she try something like hummus? It has a very easy texture but it’s a good source of iron and protein. Peanut butter too - it’s a great addition to toast or pancakes if she will have those things.

Keep innocent smoothie bottles and fill them with homemade smoothies that you can hide extra stuff in?

I would suggest not trying to trick in any way with different things in known packs - that is more likely to lead to loss of that food and even worse not trusting you to prepare food

Agree with this. They KNOW and they will never trust you again.

That’s fair enough - if OP thinks her daughter will be able to tell then it won’t work. It might work with the innocent brand but a new flavour, then she might just accept that it’s supposed to taste that way. But as I said, innocent smoothies have a lot of nutrients on their own so if she’s happy having them as they are it’s still good.

At this stage don't worry that she's only eating crap. Working on what she is eating can happen later

Can you refill a used branded bottle with a smoothie you have made? So she thinks it's the brand she likes?

My DS went through a phase of only eating certain brands, but had no clue at that age that the Cadbury hot chocolate jar actually contained a supermarket brand.

A bit outside the box with this suggestion but is hypnotherapy worth trying?

She clearly wants to eat her usual safe foods but feels physically unable.

Is there any chance she might be emetophobic? As a PP mentioned, a lot of those safe foods and tiny portions are typical of emetophobes, or a fear of vomiting. The choking incident might be triggered the fear of thinking she might be sick, rather than the stress of choking in itself. Emetophobia frequently overlaps with Audhd & ARFID, as many of the thought patterns are typical of neurodivergent thinking.

6 is young but not hugely so. My phobia started about age 7 and I already started limiting portions at that age. Sometimes I would secretly spit out food I already chewed because something in my head told it wasn't safe or might make me sick. I never admitted the true fear to anyone, so from the outside it would easily appear like arfid, anorexia or ednos.

You could broach the subject by saying which foods are good for your tummy or that having some food in your tummy actually prevents you from feeling or being sick. Start with the BRAT foods that people might typically eat after being ill. White carbs, bananas, soups, potatoes etc. The goal is to encourage her to eat more as get used to the feeling of being full. Again, it might not have that much to do with the choking but in the aftermath, she's developed an aversion to the feeling of fullness because it reminds her she might be sick. During the worst phases of my phobia, I had to be hungry at all times because the feeling of fullness would make me too anxious or trigger panic.

She might even be too young to articulate exactly what she's afraid of. Try approaching it from an emetophobic perspective and keep emphasising how some foods are good for your tummy, won't give you a tummy ache and helps your body fight off germs that might make you sick. Something along those lines and see if that makes a difference.

EDIT: I underwent therapy in my 20s and now have a completely normal diet and body weight. I love food, cooking and eating out at restaurants. I'm only a bit fussy about expiry dates and don't eat things like raw oysters but aside from that the phobia has almost no impact on my life.

This was me as a child. My parents didn't know that much about nutrition so they weren't that bothered as long as I was eating something. I subsided on UPFs and junk food for years but was ironically underweight because I didn't actually eat huge portions. One chocolate bar or one bag of crisps was a meal.

If it's any consolation, I had a wake-up call after two health scares as an adult. I overhauled my diet completely and started eating 5 portions of fruit & veg with low sugar, low carb and low UPF. I enjoy cooking and make as much as I can from scratch. I obviously feel much better than when I was just living off sugar. I still have some "background noise" of emetophobia, for instance I love fruits and veg but I will prepare it myself at home instead of buying those pre-packaged salads or raw fruit salad. I tend to eat less at other people's homes when I'm not 100% sure about the hygiene standards but on the whole it doesn't affect my life to any significant extent. I do eat enough variety that nobody ever suspects I have issues with food.

If she‘ll ask for bolognese, could you purée a portion for her?

She knows the difference and I don’t want to start messing with what she does take because the smoothies are the only way I can get some kind of fruit in to her unfortunately

Do you have an eating disorder team you can get referred to? I know in my area, they only takes kids from 8 onwards.

In the meantime, has anyone suggested shakes like ensure? Paed of GP can prescribe.

This is exactly it. I’m dealing with a child who has sensory issues and on the spectrum .
She can always tell the difference, even with Heinz spaghetti hoops and tesco brand - there is no fooling her !

I don't think it's good to talk about food being "crap" or "healthy".
The first purpose of eating is to get energy. Your kid's diet may not be perfect, but getting the calories in is a good start.

I obviously don’t say crap or junk food to her but lets be honest , it’s junk food and it’s not sustainable for her to function .

We don’t have anything like that , that I know of but it something I will google , thanks !

Weve been advised not to give drinks like that as they will fill her , and she needs to feel hungry to eat.
We did try pedisure though at one stage out of desperation and she wouldn’t even touch it unfortunately!