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.

Just read the coeliacs bit- I would just give her hf food and see. My dd is coeliac my ds the fussy eater isn't. So all the foods you mention are an easy swap to gf or gf already, just see if it helps. My dd before diagnosis started rejecting food as she knew it would make her ill. It's worth a try but I wouldnt be any reward charts etc that's too much pressure and emphasis and dont discuss or reassure her as to the brand of food given that definitely sounds like a control issue she has.
We had similar with my ds but it was definitely control- he wanted to see the tin/packet etc before he tasted the meal- we did for a while and then realised how ridiculous that was! He use to have a sticker chart too- then we thought about the message that sends to him and stopped it. We just told him to eat 3 chips, 1 mouthful beans etc if he asked. But no pressure if he didnt but no extra treats after that (I use to give him toast and milk before bed as he hadn't eaten 🙄) or she wont eat.

She obviously has huge sensory issues and very likely has ARFID. The usual advice won't make any difference and anyone telling you that children won't voluntarily starve themselves - well they will,and do.

Sounds like she needs professional psychological help from an expert in children's disordered eating. If your gp's useless maybe you'll have to go private to start with but there are organisations on line that can give you advice about getting help.
If she's as bad as you're saying she needs intervention as it'll become a huge problem which she'll be very aware of but unable to help herself.

Sorry should say gf food

Our CAMHS eating disorders team will not treat 16 year old Ds, even though he likely has ARFID. He is severely underweight, has low energy Levels and barely eats at all but we've been told it's not within their remit. So you may find that that CAMHS/mental health services won't help.

DS is 5, I totally feel you. For us I think it's connected in part to a lot of bowel issues / surgery at 1 and it's Def linked to colour / look / feel. So no ice cream, custard, anything wet bar beans, no longer does hot sausage but eats peperami sausage, only veg is beans and sweetcorn. Loved red apples but fell and hurt his tooth at school so that's hit and miss now, no other fruit bar raisins. Some other dry foods. Only water. It's shit.

We do however have an appt with psych mid April, but only because he has underlying issues so we can access it. GP referred us to CAHMS who weren't willing to help as he's complex. Might be worth a try though as if nothing else they might know where else to go.

You Def need a second opinion and I'd say get her weighed. Do it for fun, weigh lots of other things for "homework", whatever the number, praise it.

DS has a gastostromy, so we top him up with that by around 500/600 calories. I can't even imagine where we'd be without that so I appreciate how much harder you have it

You might find this helpful, it is written by an autistic child with AFRID:

autismawareness.com/the-reason-i-dont-like-to-eat/

faithmummy.wordpress.com/2018/01/20/how-a-strangers-advice-helped-my-autistic-daughter-overcome-her-eating-issues/

She eats wildly more variety at that age than DS did.
He doesn't have ARFID.
He now (age 13) makes bread and regularly cooks tea for all & will take GCSE catering. He actually tasted a bit of tamale masa the other day, too.
Still no fresh fruit but with a lot of encouragement / bribery, by age 7/8 he ate 4 different vegetables & as he gets older he increasingly will try others.

I feel your pain about the difficulties of getting any food from restaurants when out & about; we had to plan carefully for DS's food when we visited family, too. Luckily DS always ate chips & porridge. He discovered he liked scrambled eggs at age 6, too.

I'm sure things like bread, pizza, sausage rolls, chips, ketchup will be part of her diet soon enough.

@theMoJareajoke I was thinking of the house of tinytearaways too! Dr Tanya Byron is a child psychologist and she’s brilliant. Do try and see if you can find old episodes, it was on tv about 15 years ago. There are a few where she dealt with eating difficulties with young children, I remember that once she just got loads of food put on a plastic mat, jelly, yogurts, messy food and let the child play with them. For that child it was a sensory thing and just touching the items was a huge step forward.

Do you take her shopping? Let her have her own trolley and pick her own foods? Even if it’s the same brand of beans and yogurts she chooses.

But ultimately do go back to the gp and ask for a referral to cahms, or to a child psychologist- Eve if the waiting list is long you will feel better just being on it!

Lots of good advice here OP. We went through similar with DD so I completely understand the huge fear it causes you that they're going to not grow, not thrive, the situation will never change.

We ended up at a feeding clinic at Addenbrookes and met a panel of dieticians/feeding specialists who said that actually DD had a very limited range of foods but that it included all the major food groups.

From the clinic and books about 'extreme fussy eating' we learned that we had to take the stress out of the situation, nobody tries new foods under extreme pressure!

A pp has mentioned food jagging, where children drop a previously 'safe' food. SO frustrating!! I now present all safe foods in a different way each time, so cut in a different shape etc to try and prevent this.

DD has food allergies and reflux, which is where all this started, and has now been diagnosed with coeliac so getting her to eat a healthy range of foods is vital.

My main advice would be to do messy play as much as possible. Every day if you can. Messy play with foods as well as playdough/slime etc. A big part of the fear of eating can be texture or smell aversion and lots of studies show the more you can get a child to touch messy things and also foods, the more likely they are to eventually taste new foods. Get your DD involved in cooking, even if she never eats the outcome, just touching/chopping/mixing the foods will help and months down the line she might just sniff a new food. Or lick it. Or taste it. Gradually.

What part of the country are you in? Southampton children's hospital have an excellent complex feeding clinic run at bursledon house with access to clinical child psychology and a whole host of other services with could be of benefit

Thanks everyone for the support, someone mentioned the old ‘healthy children won’t starve themselves’ we’ve heard it so many times before. I’m going to weigh her this afternoon and make it part of ‘homework’ and weigh other things... might get her to weigh Heres self without the cat and then holding the cat to make it about working out how much the cat weighs which will highly entertain her (we have the most patient long suffering cat you could ever ask for who she adores) thank you to the op who suggested making a game of it, it’s so hard to get lost in the stress of it and loose the ability to be creative / come up with ‘fun’ solutions and options

Spoke to a different GP in the practice and he was much more proactive. Referral letter written to paediatric psychologist that we’ll take to our insurance, if they don’t cover it we’ll pay. He’s also asked that we take her down to check her bloods for all the basics in case she’s got to the point where she’s deficient in anything.
Gutted but relieved to be taken more seriously and offered support

I found this extremely interesting and helpful (one of the cases is a child that had a very restricted diet)

I know you know this - parental stress around children's eating can exacerbate the issue.
You all as a family need help with this not just the child presenting.
It maybe worth trying some different techniques for you and your husband to help with that.

Good luck op.

You sound like lovely parents - keep that in mind. If your were 'bad' parents you wouldn't care.

Hello there, not sure how much reassurance I can give you but I’ll have a k go. There is an old thread on mumsnet called resistant eaters, which I have posted on over the years.
My youngest son now aged 29, one day turned his head away from food aged 8 months. From then until he was about 17/18 he refused all food apart from about 8 items and none of them were allowed to touch each other. He would eat plain white bread and butter, cucumber, raw carrots, plain pieces of chicken and a few makes of plain biscuits, a few selected pieces of chocolate and occasionally peas and satsumas.
I saw many specialists, counsellors, therapists over the years but a “ cause” was never found. It impacted on our family greatly and I wish I could have dealt with it differently looking back.
He was hardly ever ill, occasional constipation due to the lack of fibre, was active and sporty and did not let his restricted diet prevent him from joining in with anything. He didn’t get any teeth TIL he was 15 months but my dentist said this was not related to diet.For the whole of his school life his packed lunch consisted off a round of bread and butter, cucumber and carrot sticks. If we ate out I took bread and butter with me.
I cried, shrieked, sympathised, and to my shame occasionally tried to force feed him. All to no avail.
I let him cook, messy food play, everything that was suggested and he enjoyed doing that but it had no impact on his eating.
When he was about 17 just before he went to university he had a plate of food on Christmas Day that was almost “ Normal” but no gravy and no touching.
He lived away at university and that was when he started to eat a slightly more varied diet, which has slowly improved to the point where he now eats most things and doesn’t have to have it not touching other items.
He now lives locally , sharing a flat with a friend and enjoys cooking a wide variety of food and eats most things.
He claims “ I wasn’t that bad mum” when I mention the years of hell!
I’m not sure what I could have done differently, except obviously trying to force him to take mouthfuls of food when I was desperately worried he would die from malnutrition. The calm days when I decided to just let him eat whatever he could out of his list, helped the rest of the family most of all.
I think what I’m trying to say it that the rest of the family suffered more throughout the years than the “ resistant eater” himself.
At one point we were interviewed for a tv documentary about children who only eat a few things for years on end. Belief it or not he wasn’t considered to be extreme enough to appear!
You have all of my sympathy, I had years of people telling me he won’t starve, he will grow out of it, if he doesn’t eat what you give him don’t offer him anything else etc etc. You just have to do what is best in your circumstances.
In conclusion, the only thing in his case that was picked up by a specialist was that his windpipe was slightly narrower than usual and it might have been a contributing factor.
There is a syndrome ( can’t remember its name but possibly Silver Russell?) where there is a kind of missing link between hunger and acting on it. He was never tested but he never ever once said to me “ mum, I’m hungry what is there to eat?”
Best wishes to you all.

Should have said, he did drink a lot of full fat milk throughout, so that’s what probably helped him survive and grow!

My DD was very similar and is 16 now
She is a vegetarian and has a healthy but limited diet, there are foods which are safe and foods which aren’t and that’s it. She also gets upset but spilled food on worktops or things touching. She has to eat lunch at school in a quiet room as the dining hall is too “messy”
The first thing I would say is try to relax (easy to say I know) but she will pick up on the stress and it makes things worse
Secondly don’t plate up food, serve it centrally and let everyone pick and if it’s one thing at a time (maybe with a change of plate) then that is ok
Throw out the rule book - breakfast at teatime, fine
Lastly ignore anyone who tells you that no child will starve themselves or anyone of the “they eat what’s in front of them” school of thought. That is for fussy children, not ones with real food issues

@HazeyJaneII we use nitrogen vitamixin sprinkles from Holland and Barrett. We sprinkle them on her toast in the mornings and we've so far managed to avoid her noticing. They mix in really well.

My friend had more success with a private OT rather than a dietician. I hope you can find some help and don’t have too many people in your life telling you it’s a phase or she’ll eat if she’s hungry!

It's good that you've been referred for blood tests. Iron deficiency in children can kill off their appetite completely.