Fussy Eater - Food Phobia

[BreatheFocusRelax]

My DD is turning 8 this year.
From birth she had a dairy intolerance.
At weaning stage we noticed that she was very fussy with textures of food & wouldn't eat certain things as they would make her sick just them being placed in her mouth.
We took her to the GP where she was referred to a dietitian, which they gave some advise but not much & stated that they would prescribe her supplements.
The supplements never became a thing despite the dietitian saying she would put this in place.
We are now a few years on & things haven't improved.
We tried to make sure she tries different foods but she would if they smell, look funny or doesn't like the feel of the texture.
She is being to get even more fussy with food.
She hardly eats any fruit, wont eat veg & wont have anything diary.
At birth she weighted 8lb 9.5oz but she is now very small for her age, that small that her 4 y/o cousin is the same heigh & I would say he is the average height for his age.
I have contacted my GP again for some more advise as we are worried about her.
Anyone been through this before or does anyone have any words of advise?
We are just so worried that when she is older that she is going to develop some sort of eating disorder.
Please be kind, it is a sensitive subject & as you can imagine I am in a state that I don't know what to do.

Hi, it sounds as if there might be some sensory processing difficulties related to food rather than fussy eating per se. The fact that your daughter has regularly gagged from weaning age from the sensation of the food rather than when attempting to swallow might fit with this. If this is the case an occupational therapist or a dietician that specialises in helping kids with sensory issues might be helpful. There are ways to help by gradually building tolerance to different tastes and textures and if it is a sensory processing issue then even just finding this out can be helpful in building awareness and a management plan. Just out of interest are there any other sensory sensitivities that might fit with this (i.e. seeks out or avoids certain textures, clothes noises etc.)?

@sam1121
I never thought of this until you have just mentioned this.
This is something I will mention to the GP tomorrow when they call.
There is certain clothes that she won't wear due to the feel & she is sensitive to some noises.

Look into ARFID

@simplefree
I will look into this, thank you.

@simplefree
OMG this is spot on...
What do I do now, other than speak with the GP tomorrow??

My son was very similar at that age, he has adapted and is now much better and inclusive of foods, but still very difficult to feed (likes the same things). We are also awaiting evaluation for asd as his sensory has extended to materials, clothing and labels.

Sounds like ARFID.

My daughter has it. It can be so hard to deal with and it's just so restrictive.

It affects everything, eating out, holidays, days out, attending parties.

People think its just fussy eating but it really isn't. You aren't alone x

@EarlofShrewsbury
Your message makes me feel better, I obviously know I'm not alone but currently have loads of questions running round my head since looking it up.
It looks so familiar & everything sounds spot on.
It seems so scary looking at it.

@Landlubber2019
My other daughter is awaiting an assessment for ASD & ADHD.
Does ARFID run alongside ASD?

ARFID is more prevalent in asd/adhd children.

It's normally down to the sensory issues.

It can also appear in children that are NT, this is usually caused by a bad experience with food when young, such as choking or mouth burning.

@EarlofShrewsbury
What is NT if you don't mind me asking as I don't know all the acronyms!

It is something I am definitely going to bring up with the GP tomorrow & hopefully it will give more guts to the referral x

NT is neurotypical.

ND is neurodiverse, ASD/ADHD etc.

@EarlofShrewsbury
Ah brilliant thank you!
I'm quite new to all of these!

Hi OP, some of this resonates - DD also vomited to get rid of most food at weaning, and now eats a very restricted range. She is otherwise, as far as we know, neurotypical.

The big difference is that my DD is a healthy weight, and tall for her age - she only eats a limited range of food, but she eats plenty of the food she likes (if that makes sense).

What happens when you offer your DD unlimited quantities of the food she does like? It would definitely be worth explaining that response to any medical professionals you interact with.

Let us know how you get on at the GP, ours referred my daughter to Paediatrics and they referred her for ASD assessment, we are on the waiting list.

She still gets seen by paeds but everytime they just make some notes say they will see her again in 8 months. No help as such.

It's been going on for 3 years for us (she's 6 now).

Definitely ARFID.
There are some wonderful therapists out there that specialise in this.

Physiological Disordered eating is not the same as a psychological eating disorder (although I would say based on my own experience there is an overlap with the response tipping the issue from physiological to psychological). Don't make food an issue. Back off. Use vitamin supplements.

DS2 had restrictive eating but OT were OK because we covered all bases. He is diagnosed ASD and Adhd He's now 16 and has just started eating broccoli and carrots. But not peas. They are the work of the devil! He's also at 6th form doing A levels in maths, further maths and physics. They don't care about his eating.

@gethaggling
This is obviously one thing that concerns me is her height & weight, as well as her not eating very much & having a very restricted diet.

Please don't brand me, but she is one of those kids who would eat chicken nuggets & chips every night cause she doesn't want to eat anything else.

If I said to her she could help herself to anything she liked she would always go to the same foods over & over again..

I am going to explain everything tomorrow, just hoping I get a doctor who wants to help me.

My nearly 9yo DD is very similar, OP. Started when she was weaning and has never really got any better. I think it stems from when she was a baby - she had CMPA which the doctors and HVs absolutely refused to even consider until she projectile vomited in front of a HV... I think she associated the sensation of eating with being sick/pain, so she refused to try anything. DH also had CMPA as a baby, and he was extremely fussy until he was about 20. DS(4) didn't have any issues as a baby and eats everything!

She has two vegetables that she will tolerate (just) and no fruit at all. No real meat. She has a good appetite but a limited diet, and I'm 90% sure she has ARFID. We're trying to get her assessed for ASD as well but it's stalled at the moment.

It's rough, sometimes. She loves going to parties and to visit friends but she's so scared about the food. She's missed out on things at school because she's too worried about the food (they do a pizza party for good attendance in a term and she refused to go in case they didn't have her type of pizza - plain!).

Good luck with it, OP, I know how frustrating and upsetting it can be.

Print some info and leave with your GP - not many people know about ARFID

I am in a FB group for parents and professionals and follow some pages on IG and LinkedIn to learn as much as I can

There are a few clinics that offer treatment usually referred by a professional - the members in the FB group are very knowleadgeable - I can send the link in private messages if you would like to.

@simplefree
Please send me the info by private message I would really appreciate it!
Thank you x

@PocketSand
It's nice to hear the positive side of things & I am so glad your son is doing so well!

www.facebook.com/groups/431391660626919/permalink/1640060829759990/?app=fbl

I will leave it here in case someone else needs it

Good luck

@simplefree
Thank you so much! x

This is Manchester based but he does online sessions

www.facebook.com/SelectiveEating

Absolutely no judgement here on what she eats - nuggets and pizza feature strongly in DD's diet. But you might be told that you need to get calories into her in a way she will eat; 'junk' is better than stunted growth, and if she'll tolerate 'healthy' versions of what she will eat, so much the better.