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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Arfid - please help

39 replies

WhoGotYourBlazer · 11/11/2022 13:18

Just at the end of my tether. DD is 6 and just doesn't want to eat. She is disappearing before our eyes. Last time we weighed her she was on the 0.4th centile. She's so small and weak it's really starting to affect her confidence and what she can do.

We've tried everything but she just doesn't like eating. Now with a combination of showing her videos and "gentle" pressure (which probably just makes the whole problem worse) she has enough to live but not enough to thrive.

She's been thoroughly tested and they can't find anything medically wrong. She just doesn't like eating.

Does anyone have a child with arfid? What did you do?.

OP posts:
wizzywig · 11/11/2022 13:19

Hi, we were referred to a dietician via school nurse. Diagnosis was easy peasy. Treatment/ management was harder, tried exposure therapy. Hasn't worked.

ElizabethBest · 11/11/2022 13:20

does she have safe foods/textures?

WhoGotYourBlazer · 11/11/2022 13:21

wizzywig · 11/11/2022 13:19

Hi, we were referred to a dietician via school nurse. Diagnosis was easy peasy. Treatment/ management was harder, tried exposure therapy. Hasn't worked.

School nurse, thanks I'll ask her school about that.

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WhoGotYourBlazer · 11/11/2022 13:23

She isn't too fussy. I mean there are a few things that she will eat such as rice, potatoes and pasta but even with those her quantities are tiny. She loves vegetables but you need to eat a lot of vegetables to get a decent amount of calories. In spite of me pouring a gallon of olive oil or some other fat on them.

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Punxsutawney · 11/11/2022 13:26

Ds was diagnosed and treated here -
mccaed.slam.nhs.uk/professionals/our-services/afrid-clinic/

We don't live in London but our CCG funded some sessions as we could get no help locally.

WhoGotYourBlazer · 11/11/2022 13:33

Punxsutawney · 11/11/2022 13:26

Ds was diagnosed and treated here -
mccaed.slam.nhs.uk/professionals/our-services/afrid-clinic/

We don't live in London but our CCG funded some sessions as we could get no help locally.

If you don't mind sharing. Did it help?

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Blueotter22 · 11/11/2022 13:36

Do you have a local sensory pathway she can be referred to or have you thought about private sensory OT?

Is it the taste of food?
Texture?
Smells?
Does she struggle to identify when she is feeling hungry? Or does she find the sensation of being full/food digesting challenging? (Interoception)

Eating is such a multi sensory experience, it might be helpful to seek some advice from a sensory specialist or have a look online for sensory based resources/ YouTube/ Facebook groups

Runestone · 11/11/2022 13:40

School nurse is first port of call, then from there you can be referred on to dietician or sensory pathway if needs be.

Does your child have autism or any other diagnosis? ARFID is really common in autistic children, my own included.

WhoGotYourBlazer · 11/11/2022 13:44

Blueotter22 · 11/11/2022 13:36

Do you have a local sensory pathway she can be referred to or have you thought about private sensory OT?

Is it the taste of food?
Texture?
Smells?
Does she struggle to identify when she is feeling hungry? Or does she find the sensation of being full/food digesting challenging? (Interoception)

Eating is such a multi sensory experience, it might be helpful to seek some advice from a sensory specialist or have a look online for sensory based resources/ YouTube/ Facebook groups

She just never seems to be hungry. She doesn't even like eating chocolates or most sweets. I imagine for her it's like asking her to eat after she's already had a full 7 course meal.

The other problem I think might be that she eats so slowly that she gets satiety signals too soon because she's been sat in front of her plate for half an hour and has only had two tiny spoons. If I feed her (while she's watching a video) she eats more and quicker.

OP posts:
WhoGotYourBlazer · 11/11/2022 13:45

Runestone · 11/11/2022 13:40

School nurse is first port of call, then from there you can be referred on to dietician or sensory pathway if needs be.

Does your child have autism or any other diagnosis? ARFID is really common in autistic children, my own included.

I don't think so. She doesn't seem to have any other symptoms. She's ways been a reluctant eater and we've always struggled with Weight gain right from birth I'd say.

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Punxsutawney · 11/11/2022 13:48

WhoGotYourBlazer. It helped a little. If I'm honest not as much as I would have liked. Unfortunately our CCG only funded 10 sessions. And then Ds turned 18 and was too old for the service anyway.

Getting support for his ARFID has been incredibly difficult. Locally we have tried CAMHS, eating disorders service, sensory OT and dietician. Some helped a little, others like the ED service refused to see him. Ds is now a young adult and we are still struggling...

bigfamilygrowingupfast · 11/11/2022 13:48

I was a nanny and one of the kids I looked after for a long time was like this. I used to cook dinner with them, so they'd stand with me (or on a step when they were little) and "help" cook dinner, whether I was making a bolognaise or just ovening some fish fingers. The fact they'd been a part of the process meant they wolfed it down.

bigfamilygrowingupfast · 11/11/2022 13:49

Also no YouTube or TV etc. she needs to concentrate fully on "mealtime" so either eating as a family or you sat with her talking about your days etc

WhoGotYourBlazer · 11/11/2022 13:52

Punxsutawney · 11/11/2022 13:48

WhoGotYourBlazer. It helped a little. If I'm honest not as much as I would have liked. Unfortunately our CCG only funded 10 sessions. And then Ds turned 18 and was too old for the service anyway.

Getting support for his ARFID has been incredibly difficult. Locally we have tried CAMHS, eating disorders service, sensory OT and dietician. Some helped a little, others like the ED service refused to see him. Ds is now a young adult and we are still struggling...

Oh thanks. I'm sorry your son is still struggling. This must be so stressful for you.

I'm trying to see if I can find a child psychologist who specialises in eating disorders in our town but there doesn't seem to be anyone obvious. Our GP has already refused to.refer her. He said the waiting lists are over a year. There's be no point and she isn't a serious case (in the sense that it's not a matter of life and death). Same for a dietician. I don't mind going private but can't really find anyone easily either.

I tried camhs but they said she's too young for them to deal with.

OP posts:
WhoGotYourBlazer · 11/11/2022 13:53

bigfamilygrowingupfast · 11/11/2022 13:48

I was a nanny and one of the kids I looked after for a long time was like this. I used to cook dinner with them, so they'd stand with me (or on a step when they were little) and "help" cook dinner, whether I was making a bolognaise or just ovening some fish fingers. The fact they'd been a part of the process meant they wolfed it down.

We cook with her very often. She loves cooking but still won't eat what she has cooked.

OP posts:
WhoGotYourBlazer · 11/11/2022 13:55

bigfamilygrowingupfast · 11/11/2022 13:49

Also no YouTube or TV etc. she needs to concentrate fully on "mealtime" so either eating as a family or you sat with her talking about your days etc

We've tried that but then either she talks so much that she doesn't get an opportunity to eat or forgets about eating or looks.for.something else to distract / entertain her.

I resisted letting her her watch anything with meals for a very long time but it means at least something gets into her and it makes mealtimes more pleasant as we don't keep pressurising her to eat.

OP posts:
SunSparkle · 11/11/2022 13:57

Does she drink? Does she have a preference for soft or puree foods? Does she gag when she goes to swallow? Does she get scared of trying new foods? Is she scared of gaining weight?

Beachsidesunset · 11/11/2022 14:00

Will she take liquid calories?

WhoGotYourBlazer · 11/11/2022 14:00

SunSparkle · 11/11/2022 13:57

Does she drink? Does she have a preference for soft or puree foods? Does she gag when she goes to swallow? Does she get scared of trying new foods? Is she scared of gaining weight?

No, she doesn't like soft food except for rice and yogurt. She doesn't gag and has never chocked. She likes drinking water and juice and seems to.tolerate milk. We try to give her pediasure in the morning because she struggles so much with breakfast but now she can't even manage to have a bottle of pediasure in 30minutes. It seems like the less pressure we put the less she eats.

OP posts:
WhoGotYourBlazer · 11/11/2022 14:01

Beachsidesunset · 11/11/2022 14:00

Will she take liquid calories?

She won't have smoothies and she's going off pediasure and chocolate milk. She does like juice and I give her milk every evening. We tried for a while jersey milk as it has slightly more fat but she's gone off that so we just give her normal whole milk.

OP posts:
ManicMinor · 11/11/2022 14:04

All sounds very familiar. Agree to see if you can access some dietician support, they have good advice and can prescribe supplements if needed. There are some ARFID FB groups, but tbh the communities around this diagnosis are much more focused on the extreme restrictive diet type of ARFID vs just not eating enough.

Based on what we’ve found useful, that is just about keeping us on track:

Assume you already know the need to eat 5-6 times a day, smaller meals but more often. Puddings after every meal, forget usual healthy eating rules.

Its much easier to drink more calories than eat them, and although milkshakes and smoothies are best, you can get fortified juice. I do a fair bit of baking now as I can boost calories by adding ground nuts to flapjacks for example. Adding butter, oil and cream to anything I can. If she’s off gold milk you could try adding powdered milk to normal milk, it doesn’t change the taste to the same extent.

Also have a look at satiety index information - some food gets digested much more quickly and some makes you feel fuller for longer (boiled potatoes the worst for this). If you can focus on low satiety foods, she should feel able to eat more a couple of hours later. Fast digestible carbs are low satiety, e.g. brioche or croissants.

Vitamin supplementation.

And try to keep pressure low. Gentle prompting to have a little more, fine. Bribery, more direct pressure, impatience and frustration (god it’s hard though!), talk about calories etc, not fine. I’ve had very clear steer on this from the clinical psychologist we saw.

I recognise the slow eating issue and talking too much. Although distraction while eating can sometimes be helpful, I’ve found it counter-productive because it leads to forgetting to take another mouthful or even chew and swallow what’s in their mouth. Eating together to role model pace has been more helpful for us.

Sirzy · 11/11/2022 14:11

Have you seen a dietican? There are other alternative supplements which they can try it can just be a bit trial and error. Focus on calories in!

there is a great FB group called ARFID U.K. parents and carers.

for Ds and a lot of children there isn’t any treatment as such it’s just a case of doing what is needed. Ds is tube fed now and actually eats more now orally than he has for a long while because there is no pressure to eat. (Still nowhere near enough to keep him going without the tube though)

WhoGotYourBlazer · 11/11/2022 14:12

ManicMinor · 11/11/2022 14:04

All sounds very familiar. Agree to see if you can access some dietician support, they have good advice and can prescribe supplements if needed. There are some ARFID FB groups, but tbh the communities around this diagnosis are much more focused on the extreme restrictive diet type of ARFID vs just not eating enough.

Based on what we’ve found useful, that is just about keeping us on track:

Assume you already know the need to eat 5-6 times a day, smaller meals but more often. Puddings after every meal, forget usual healthy eating rules.

Its much easier to drink more calories than eat them, and although milkshakes and smoothies are best, you can get fortified juice. I do a fair bit of baking now as I can boost calories by adding ground nuts to flapjacks for example. Adding butter, oil and cream to anything I can. If she’s off gold milk you could try adding powdered milk to normal milk, it doesn’t change the taste to the same extent.

Also have a look at satiety index information - some food gets digested much more quickly and some makes you feel fuller for longer (boiled potatoes the worst for this). If you can focus on low satiety foods, she should feel able to eat more a couple of hours later. Fast digestible carbs are low satiety, e.g. brioche or croissants.

Vitamin supplementation.

And try to keep pressure low. Gentle prompting to have a little more, fine. Bribery, more direct pressure, impatience and frustration (god it’s hard though!), talk about calories etc, not fine. I’ve had very clear steer on this from the clinical psychologist we saw.

I recognise the slow eating issue and talking too much. Although distraction while eating can sometimes be helpful, I’ve found it counter-productive because it leads to forgetting to take another mouthful or even chew and swallow what’s in their mouth. Eating together to role model pace has been more helpful for us.

Thank you. I'll try powdered milk in normal milk. She doesn't eat most puddings. Isn't keen on sweet stuff. The only sweets she likes are Haribo and lolly types (and we don't restrict these either but even of those she won't have a lot).

So as far as I know low fibre, processed food, sugary and white carbs have a low satiety index. I didn't realise boiled potatoes were high. We've been giving her more and more processed food and sugary stuff (chocolate pancakes and waffles, choc au pain, croissants) just to increase the calories but at some point i guess it will all just be empty calories and she even struggles to eat these most of the time.

I think the pressure thing is key but neither me nor dh find it easy not putting any pressure. We might manage for a few a few meals or even a day or two but then we are like you haven't eaten in days. How can you not be hungry. I know it doesn't help but I'm also not convinced shed eat more with no pressure.

OP posts:
Whatsleftnow · 11/11/2022 14:14

As a caveat, I’m dealing with much milder issues with my ds. What I would suggest you need is to develop a detailed sensory profile of your dd with an OT and then get a qualified behaviour therapist to do a functional analysis of mealtimes and eating.

If those are unavailable or an affordable you could go a long way to both of those with internet resources.

But without a finely detailed understanding of the specifics of the issues, there’s a risk of making things worse using generic approaches.

Putting tiny amounts of new foods, touching food and cooking with my ds were all counter productive.

WhoGotYourBlazer · 11/11/2022 14:14

Sirzy · 11/11/2022 14:11

Have you seen a dietican? There are other alternative supplements which they can try it can just be a bit trial and error. Focus on calories in!

there is a great FB group called ARFID U.K. parents and carers.

for Ds and a lot of children there isn’t any treatment as such it’s just a case of doing what is needed. Ds is tube fed now and actually eats more now orally than he has for a long while because there is no pressure to eat. (Still nowhere near enough to keep him going without the tube though)

No dietician. I'll have to find someone privately. Thanks I'll check out the FB group.

How does he get tube fed? Is this at home? I don't think her situation is that serious yet but I know she would love it if she could just take something like a pill that fulfilled all.her dietary requirements and never had to eat again. She takes a daily multivitamin (one of the few things she actually loves).

OP posts: