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 ?

Only suggestion i have, is it possible to arrange a different eating situation eg at aunty's house, at a picnic, with friends/ cousins.
My tricky little one used to eat whatever her cousins were having, so i would get a Sunday roast into her. Then it was back to plain pasta and a frozen frube... hugs to everyone who has a fussy eater.

I would follow arfid groups as pp said.

I follow an Instagram account called evie the explorer who has given me tips on managing restrictive eating in dc. Plus kids eat in color too helped me plan strategies around food.

The key for us was hugely reducing pressure on eating. Always having a safe food (and enough to fill up on) at every meal but putting different food in the table or plate in miniscule quantities and not commenting on whether it was eaten or not . Eg one sliver of a carrot next to the safe food.

My dc was not as extreme as yours but has very gradually improved willingness to tolerate new foods after we have some difficult phases with eating in the past. I also suspect some ND is relevant here too.

We never suggest one more bite at meals or hide foods/trick dc into "trying" something as I found that added pressure and was counter productive.

I do casually talk between meals about the things "kids eat in color" teach, eg green foods help fight germs etc which sparked some interest.

It's a long road and very difficult to manage.

Advice:

Multivitamin supplements. Try loads until you get one she will tolerate.

There are a lot of meal replacement drinks out there as well - complan is what my DD uses.

It takes a long time to work on this. We did rewards charts, cooking, trying something new each week. None work fast but they all help.

May or May not be something you've tried, but I wonder if distraction might help somewhat - sit her in front of a favourite TV program/film with a plate of her chosen food - is there a chance she may eat a bit more absent mindedly when the focus isn't actually on eating?

Try homemade smoothie in innocent bottle maybe? 🤔

Thanks, I joined one of the Arfid groups a couple of weeks ago so will reach out there and see if they can offer advice!

I’ve thought about this but was thinking she might not go for it . No harm in trying though , thanks !

Nope I’ve tried everything . In the beginning she would eat the soup from spaghetti hoops so I would buy cans of it and drain them . It ended up only a tiny bit of liquid so I’d need about 4 big cans and then the actual spaghetti hoops went to waste . She went off that Then !
Yep only the innocent ones and to be honest the other brands don’t have as much nutrients in them so I don’t mind .
Have tried making smoothies but she won’t drink drink them unfortunately

Thanks for that . I’ve an app with gp on Monday with her so I’ll going to say again about the slt

Good idea re games and chewing

Yes we’ve had a sensory diet plan put in place for the past year and also a visual timetable ( which she is very resistant!)

That’s very hard , sorry to hear you went through that . Anything issues with eating is so emotive do it’s very stressful
Glad to hear your ds is doing well now .
I was thinking of some kind of reward chart . I feel I’ve nothing to lose now by trying it just to see if it can encourage her !

Thank you

Yes I know what Arfid is and have been dipping in and out of reading about it . It’s been mentioned a lot so will do some proper research this evening.

I did email a feeding OT but unfortunately they are not taking on any more patients.
Im in Ireland and it’s extremely hard to get services privately and nearly impossible going through the public system

Could you buys some of the large innocent smoothies in bottles and reuse the bottles. Put homemade ones in.

Would she eat homemade biscuits? Cam do veggie muffins. I'd be so worried all she's eating is processed junk. Is there nothing fresh or homemade she'd eat? How did none of those things become her safe foods?

There was a course local to us a friend used for her autistic son. It was playing with food and lots of games with veggies. Holding things in their mouths- whole carrots sideways then moving onto lickong different flavour ice etc. It worked really well for her. Maybe see if there's anything like that near you?

I have a PDAer who has a restricted diet, although I would say it’s quite in ARFID territory.

Mine will avoid a specific food for a few months or years if he has it once and it’s not quite right ie soft biscuits, over or under ripe fruit. So what she is doing makes complete sense. She’s had a shock.

She’s eating something, so that’s great. Remove the pressure. Leave food she will eat around the place for her. Throw out what you think should happen at meal times and do whatever you need to do to get her eating whether that is TV, on her own in a hiding place etc etc.

Getting something in is the most important thing, then getting enough calories in, then getting macro nutrients and micro nutrients.

The paediatric dietician recommended to us that mine had a daily multivitamin, but also daily calcium and iron supplements. If sweets are okay it might be worth giving those a go.

Hariborange do a tablet that has both iron and calcium in it, but even I think it’s absolutely disgusting. Haliborange and others do separate chewy sweets for iron and calcium.

If you start using fortified supplement milkshakes or the like do make sure you don’t double dose.

It is sole destroying with all the healthy eating campaigns on knowing that your child is subsisting off of sugar and processed food but baby steps and no pressure are your friends.

Someone upthread mentioned about using oral stimulation aids. Given it’s the swallowing part I wonder if there’s anything that can be done that is more throat based, but I don’t know anything about that. You are into SALT territory, or SALT/OT combined.

So sorry to hear what you went through , hope you are doing well now .
💐

Have you tried playing with food? For example if she likes craft, making pictures with dry pasta as a start, then maybe mandalas with dyed rice? Could then move on to cooked pasta e.g. have a laminated picture of a face and using cooked spaghetti to make hair? Or a sensory type thing with a hidden (washed!) plastic toy that she likes hidden in cooked pasta for her to find, she’s exploring the texture/sensory aspects with no expectation she will eat. You would probably need to do it too and make it a game etc.

Also could you somehow open the innocent smoothie packs and put something else inside them without her noticing? Or maybe “lose” the straw so it has to be poured into a cup (in front of her) so she might accept other smoothies?

Yes we do find it we’re out with friends and we are walking around with them she will eat while distracted - but unfortunately it’s something like Pringle’s and even with that I’m happy something is getting in to her - just such a stressful situation

Thanks , I do follow kids eat in colour but will follow your other suggestion too !

She doesn’t eat at the table at the moment, it was causing to much pressure- for everyone!

She won’t eat more of the foods she likes unfortunately. She used to absolutely love plain pasta and i had to limit the amount she ate!
Now we are lucky if she will eat two pieces .
She has a genuine fear of swallowing .
We just don’t understand how she can eat something like an Oreo or Pom bear without thinking and as soon as it’s a “normal “ food she seems to just clam up 😓

Hi
Also solidarity here, my boy (Autistic) ate only chicken nuggets and innocent smoothies for more than a year. Then stopped drinking the smoothies when they changed to a paper straw! Its so stressful. Im also in Ireland. Two suggestions only, as you have so many good ones up thread
a) contact the Central Remedial Clinic in Dublin and ask to refer child to their Complex Feeding Clinic.
b) phone and write to Dietitian service you are referred to, advise of your childs weight loss. I have the national prioritisation sytem for Dietetics and weight loss as significant as hers should mean she is Priority 1 and seen within 4 weeks.
c) Nutrigen Vitamin Sprinkles. From Holland & Barret. Tastless, you can put them in/on anything, only vitamin my boy couldnt detect so didnt refuse.
Good Luck x

I’ve tried all the multivitamins , she will at the moment take the sambucal.

We were advised not to give meal replacement drinks as it will fill her and we need her to feel hungry to get her back to eat .
We did a few weeks ago , go against this advice and picked up pedisure but she wouldn’t touch it !

I think some posters don’t realise that if you have a child with potential autism/ sensory issues that they are very sensitive to the tastes & textures of certain foods. So swapping the packaging won’t work. A homemade smoothie tastes very different & has a different texture to an Innocent one. For eg. my DD will only eat certain brands of foods & we’ve tried all the usual tricks but she can always ALWAYS tell if it’s different! It’s really annoying!

Would she eat if her pals are eating?

Could you have a kids party for some reason and invite friends round and serve sandwiches, cake etc and sit them all down to eat and she can join in if she wants to?

S*ummer
*
If she eats cake have you looked at oat muffins? You could even make those (oats, banana and dark chocolate) and the. Add some butter icing or something on top to make it into a cake.

I know when we've had children before with very limited diets and eating small amounts (I work sen Ed) we have made sure the small amount they do eat is high calorie and high fat). So if they eat mash potato it's mashed with butter and cream.

Also has anyone mentioned the powder you can add to foods to increase the calories? You could perhaps add it to the pouches she will eat?

For some the solution has ended up being a NG tube (the feeding tube via the nose). I'm not sure of the medical science but frequent amounts of food into the stomach does something about the hunger signals.

Not recognising hunger signals can be related to sensory processing in the same way as not recognising being full.

But I agree that a psychologist who specialises in ND and disordered eating would be best here. I'm wondering if you need to look further afield and do online consults?

My oldest was medically underweight at around 6 but due to lack of appetite and asd. We were told to give him what he wants as long as he was eating something. He had cheesecake or donuts for breakfast.

Your daughter might not eat cheesecake for breakfast but whatever she will eat let her. If that’s chocolate let her eat it, petit filous let her eat it. Let her help herself from the fridge/cupboard. Fill it with her favourite things and take all the stress/anxiety away from food. An asd/afrid child will starve themselves so don’t believe that bollocks about eating if they’re hungry.