Help with extreme fussy eater now refusing food

[Fussyeaternightmare]

We’re at crisis point with our 6yo dd and not sure where to turn next. She’s always been a fussy eater right from the get go. I’m convinced that her awful reflux as a baby which was initially dismissed by hcp and finally medicated for when she was a couple of mo the old has damaged her relationship with food / eating.

She has a very restricted diet and has always been very light for her age. She was on the 5th percentile when born (she’s a twin so this was normal and actually a good birth weight for a twin) but she’s slipped further and further down. Couldn’t tell you what she weighs at the minute exactly as we don’t want to worry her by weighing but although she’s a normal height for her age she’s extremely slight of build. I have to take trousers in for them to stay up on her.

She’s getting worse though and recently has stopped eating much of the limited things that were on the list of safe food. She has always been offered incredibly strong willed and this has become a total battle ground. We’ve tried everything... I even grew out own bloody vegetables last year in raised beds to get her involved. I’ve tried cooking with her, which she’ll do and then when it comes out of the oven just say she made it for daddy to eat. We’ve done reward charts which don’t work, and family feasts with loads of stuff on the table, doesn’t work.. She’ll eats chocolate and ice cream which no issue at all, but any actual food other than a very short and ever diminishing list is extremely difficult.

Who can we turn to? GP has been consistently crap and offered to refer us to a dietician but we’ve just been given healthy eating bloody info sheets... not the point at all. I’ve approached the school who basically said they can’t help or offer us anyone through the educational system who can help. I’m starting to think she needs a child psychologist or similar to help her through whatever issues she might have. Has anyone had similar and found a course of action or route through a professional that helped?

Also before anyone says it’s just a phase and she’ll grow out of it, please don’t, it’s not a phase... there is something going on that we’ve been trying to deal with for years and hasn’t improved, only worsened. We’ve had a really rough day with her lunch coming back virtually intact and she refused to eat at dinner so I’m really beside myself.

What is her list of safe foods like - are they all.simillar in any way eg colour/texture? Are there enough foods that she can get enough nutrients for the day even if it's the same 3 meals a day every day?

Have you tried removing yourself from the situation . Will she eat for another adult if they insist? This can be very reassuring for you also if they will eat but just dig in for Mum.

You need to push with the GP and ask for a referral, or try a new GP.

There is a condition called AFRID - have a look at that and see if it resonates.

My DS(6) has been a fussy eater since he was 14 months old and was under a dietician for two years, but all they can really do is advise what he should be eating (hardly any revelations there).

We also spoke to an Occupational Therapist (NHS self-referral) as I wanted to rule out any sensory issues so you could look at that too. We had a phone consultation and I was asked a long list of questions to determine if DS should be seen by them but they determined he was ‘just’ fussy and there was no underlying issues.

In the meantime to avoid a power struggle I would serve up food (including safe foods) in the middle of the table for everyone to help themselves. Don’t comment on what anyone does or doesn’t eat.

@Findahouse21 thanks for the reply, they’re all quite different things, beans (has to be Heinz, with one specific type of cheese (won’t try any other cheese at all. Sausages but only from one butchers (she can tell the difference on taste and look if we try to substitute) and they have to have the ends cut off, with brown sauce. She’ll eat peas and pancakes but they have to be the Sainsbury’s ones in the green packet, won’t eat them if they’re any other brand or if they’re too ‘brown’. She’ll eat ginger oat cakes (one brand only) with the same cheese that she likes. Only breakfast she’ll have is a chocolate ball muller corner. Apart from that she’ll have strawberries, melon and occasionally apple but it has to be peeled for her so we can’t even send them into school.

It’s painful trying to make meals, so frustrating all round and it’s now limiting her brothers ability to try new things as were so restricted, she’ll sit making fetching noises at the table if we try to introduce new things which clearly puts her brother off his!

Hi OP I didn't want to read and run. My DD (6) is autistic and has quite a few sensory issues and has a very limited beige diet.
A little like your DD my daughter had severe CMPA at a young age which lead to her refusing to wean and being tube fed.
We saw a speech and language therapist specialising in child hood eating disorders and paid privately in desperation to help us.
When a child refuses to eat a food from their limited range it's called a food jag. The aim is to try and expand their range of limited foods so it's not so difficult when they decide not to eat the food they've always eaten. For example my DD will eat cream crackers so we introduce her to breadsticks, ritz crackers etc.
One of the things we were told was to eat together as much as possible as a family where everyone helps themselves. Your DD can then have a portion of safe food to the side of her plate and can help herself to a tiny portion of whatever she fancies.
It's incredibly stressful but honestly once I stopped being so anxious my DD has improved and has started to very slowly widen her range of foods.
She also has invisible and tasteless vitamins that we sprinkle over her breakfast did nutrition.
There's a book I have called can't eat won't eat which is really very good and explains food jags etc.
I sympathise as it's incredibly stressful so wish you lots of luck. I hope this helps.

@Molly2008 she won’t eat any better for anyone else, school lunches come back barely touched

@Heretooutthere I’ll be calling the house again in the morning, we really are at our wits end. I’ve not heard of AFRID, I’ll look it up now, thank you

I'd seek a referral to your local CAMHS or if you could seek a private appointment may be better to go. That way as CAMHS waiting lists can be super long

My grandson had this . He had a real fear of swallowing some foods. We tried everything it’s not just a phase we did the growing of vegetables making of food . He was not interested he also had awful reflux so food become the enemy .

One day overnight he suddenly asked for a McDonald’s then very gradually he got better ; He is nine now still underweight but does eat most things . Does she eat anything at school ?

The brand thing struck a familiar chord with me too. My DD will only eat walkers ready salted crisps and even if you put a different brand of ready salted crisps in a bowl she would know!

@Daisychainsandglitter thank you, sorry youve had similar, it is incredibly stressful. I’ll have a look at that book. We’ve definitley got over stressed by the whole thing. I’ve been through cycles of letting go and trying to just get on with it but it always seems to end up with her dropping something else from the safe list and then it spikes out anxiety again. If she ever gets fed up of beans I honestly don’t know what we’ll do

Oh sorry just read the next bit . It does sound like she has sensory issues. Go into the school and get calms involved.

This can be so stressful and yet I really know it’s important not to add any pressure or emotion to it. I actually think that list of goods has some good nutrition in and could be worse but that won’t make you feel better as it must be so hard.

I agree push hard for professional help if it can be found as you sound like otherwise doing such helpful things. I’m absolutely sure you’re right the reflux might have started it, and have you ruled out an underlying intolerance? This was a breakthrough for us with DD but by the time we realised she associated food with tummy aches and not feeling well I am sure. Over the years with avoiding dairy and wheat in her case she’s slowly built confidence and no longer extremely fussy at all , and I always tried to keep positive and for example to get used to things being on her plate even if she didn’t want to eat them.
Eventually with no pressure ever she did

I'm a chef and in normal times I create and cook menus for residential activities breaks for children and young adults

My first thought on this was ARFID too. If your daughter will drink milkshakes then the ready made slimfast shakes are really good, and you can always add ice cream to them as well. This will get some nutrition into her.

Does she have her pancakes plain, what does she have on them?

Does she drink anything besides water?

What are you putting in her lunchbox that are foods she has eaten previously in the last year?

Among these foods, what will she eat: biscuits, sweets, ice cream, cake, crisps?

@Looseleaf I do wonder if there’s a food intolerance, but terrified that if there is it will restrict her even more. Her twin has just gone gluten free, he’s had pretty bad tummy trouble over the years and also had reflux, but strangely never been fussy like she is.

He’s so happy to try new things (most of the time) and we’ve seen a huge improvement in him since we went gluten free.
Dd though is so stubborn that if we take her off gluten, she won’t try any replacements and it’ll literally cut out most of the things that she actually gets calories from. So we’ll be instantly halving her safe list and more than halving her calorie intake

I was a very fussy eater as a child, I remember my mum taking me to the GP and his advice was she will eat when she wants to...not very helpful to her at the time im sure.

From my point of view as that child, it used to really annoy me that food kept getting pushed on to me or it getting constantly talked about, it made me refuse it even more.

Id say talk to her and see what she wants to eat and get in the foods she likes and give her a bit of choice. It will be annoying for you, but as long as she's eating thats the main thing.

@lljkk she’ll have butter on her pancakes (I’ve always tried to keep that up as it’s good to see a bit of fat going into her) she won’t take jam though.

She only drink the Sainsbury’s apple and mango juice, which again I’m happy to go wi thy as it’s additional calories and vitamins

She refuses to eat sweets of any description but will eat chocolate, doesn’t really eat cake but will lick the icing off () won’t eat crisps but will happily eat ice cream.

Dh and I would literally kill to see her eat junk food.. we’ve tried to take her to kfc (won’t touch anything) McDonald’s is the same

Could she be coeliac?
Just let her eat whatever she fancies would be my other advice. Let her have control over it.

I was also going to say to read up on ARFID as I could have written this about my DD at the same age. That said, DD was diagnosed as autistic at 15 so clearly the eating issue has been connected to that. She's got real sensory issues with food. However I'm also autistic and I'll eat anything, so the two are not necessarily comorbid. I found my health visitor was pretty useful in terms of helping me think about food in daily terms rather than specific meals. Eg, did DD eat enough dairy today, or enough protein, etc, rather than just being fixated that she didn't eat the veg I gave her at dinner. Veg was a big issue ( we also grew our own), and I resolved to give her as much of whatever she would eat as long as she was eating it. If it meant she had carrots six times a week I didn't care, as long as she had some veg.

The biggest issue was coping with the opinions of other people about how you've clearly been too indulgent with them in some way. Ha! Not a chance. The battles I had with that child. And now I feel horrific because I was effectively forcing an autistic child to do something that terrified her. It is awful as your instinct is to worry about their eating all the time!

All I can suggest is that you maybe get a chart that had icons for all the food groups and tell her that she has to have something from each one each day (for example), but she can choose what she has. Maybe the control will help?

Don't impose a gluten free diet on someone though unless they are diagnosed as coeliac.

I read your op and recognise everything you've been going through. My ds is 6 and he has food issues which started from his awful reflux (which led to oesophagitis). He was under the speech and language team, dietician and the neurologists at the Evalina.

His eating has been particularly awful through lockdown and he has really restricted himself. We've discovered its his way of coping and having control over something. At the peak of it all he ate the same thing for lunch for about 5 weeks!

@lljkk her lunch if that same everyday, snack time she’ll get the ginger oat biscuits and cheese (which we think she eats) the lunch she’ll have a box of strawberries or melon, a wrap with the cheese she likes and red pepper... she opens the wrap up and eats bits of the cheese and bits of the pepper.. the wrap comes home with the remnants of whatever she’s left in it, and then she’ll have a chocolate biscuit and a juice bottle with her apple and mango... every single day... if I try to suggest anything else she has a tantrum.

@surlycurly thankyou, I’ll definitley read up on AFRID, it’s been mentioned a few times now by pps. The icon chart sounds really useful even just to reassure us that she’s getting what she needs, even if it is in small amounts, from each of the different food groups

@Pinkflipflop85 it’s not easy, I feel your pain!