Seeing GP about ARFID during covid (Scotland)

[Mibb]

Hi I am about 99.9% sure that my dd16 has ARFID and that my younger DC does too. I have been aware of this a long time but we've just sort of learned to live with it. I got the SED /arfid video from Felix Economakis a few years ago but couldn't persuade dd to watch it. Tbh I haven't thought too much about it for a while so when I came across it again it really struck me that it's become more recognised as an eating disorder over the past couple of years. I'm wondering whether it's advisable to take them to GP. I'm worried about wasting GP time during covid, and also about having to fight to be tAken seriously and whether there will be any local effective help available (specialists all seem to be in London / England) And also about CAMHS waiting list being so long! So a long list of worries, i guess I'm trying to work out whether to go that route or see if it's possible to get help privately, but obvs that's going to cost a lot. I'd love to chat if your kid got a diagnosis on NHS and how that came about? Also if anyone's gone private (eg the Heath clinic) and had success with this. Thanks 😊

For a bit of context. Dd's foods are 2 flavours of crisps, bagels (sometimes) + sourdough bread. Occasionally fries and 2 types of take out pizza with specific topping and no cheese. In the past year we have branched out into spaghetti with smooth tomato sauce made to a specific recipe. This has been a huge win as there is now one "proper" meal me and my dd can eat together.

Hi, I’m not a specialist in ED or child mental health, however I do work in Adult mental health and refer and liaise with Adult ED clinicians. Honestly, if I assessed an adult who was only able to eat the foods on the list your DD eats I would be very concerned and would be asking consent to refer to specialist services. If only from a physical health perspective but also of course from a quality of life going into adulthood. Please do insist on a GP appt at the very least- give them the list you posted here and I am sure they will refer her.

My dd was diagnosed via Camhs but they took her on initially as she had anorexia or was heading towards it.
Luckily she did regain weight but was also diagnosed with ARFID.
She was 15 then, 18 now.
In terms of treatment I can't really say there was any for the ARFID. For weight gain we were told to give her larger portions of what she would eat initially together with iron and vitamin D after blood tests showed deficiencies.
Advice from the nutritionist was to try tiny portions of things.
Have you looked at the BEAT website? You might find information/support there.
We do have ASD in the family so I expect the sensory issues might be related to that.

Thank you both for your replies. My dd has never been underweight, which I guess is why the gp has never really picked up on it. I have mentioned to them on many occasions that her diet is very restricted, but they never seem to understand and just think it's normal picky eating. She was also at CAMHS for anxiety at one point and they did know about the extent of restrictive eating but weren't really able to help as she was very resistant. She's more open to help now and was having CBT for her anxiety, but I feel like she would benefit from talking to someone specialized in eating disorders. From experience there seems to be a lot of misunderstanding about this condition.

Housecoat, how did your daughter get on with trying tiny portions? I don't think this work for my dd. I have tried many many strategies over the years and she's been in different situations and she physically can't eat different things without gagging etc.

Mibb it's difficult. Especially with a teenager. We have some similar issues.

Ds is 16 and seeing CAMHS for anxiety and depression (he also has ASD) and they have suggested he has ARFID. They won't help him though, they say it's not within their remit as he has no issues with body image. Told us to ask the GP. Ds saw a dietitian about 18 months ago for a one off appointment but it didn't help.

Ds is severely underweight and below the 1st percentile on the children's BMI chart. In the last month he's restricted his safe food even more. One day last week, we got to 10pm and all he had all day was two very small pancakes and a hot chocolate. His energy levels are awful and he often has bad stomach pain.

We are lost at the moment. He has not long had an OT sensory assessment and has been referred for sensory integration therapy, they have said they can hopefully help with eating too. I hope they can because nobody else seems to be able to, even though Ds is very underweight.

Punxsutawney - thanks for your reply. That sounds like a really hard situation. I don't think a dietician would help dd either. She's totally aware of diet / health etc, and wants to be able to eat more foods but it's like a sensory thing / phobia.

I hope that you're able to get some help for your ds soon.

Thanks Mibb.

I do think there isn't enough support for eating difficulties like ARFID. When Ds was first referred to CAMHS and they knew he was very underweight it seemed like they would help. But as soon as they realised it wasn't anorexia or a conventional eating disorder, they said it wasn't something they deal with. I told Ds's CAMHS worker last week that he is barely eating and was so exhausted that he struggled to get to school one morning but there is nothing they can do.

I'm wondering if we should approach the GP again but I don't hold out much hope with that. I've noticed that some areas seem to have specialist help for ARFID but our area definitely doesn't.

It does sound like it could be sensory difficulties for your Dd. The OT that assessed Ds says that occupational therapy can help if there is a sensory aspect to the eating difficulties. She also mentioned that there can be problems with interoception and that means that some children and young people don't recognise hunger very well. In our area the OT's will only support sensory difficulties when a child or young person has a diagnosis of ASD.

It's definitely more than picky eating and can have a really big impact on daily life. Hope you can make a bit of progress going forward and find the right kind of help for you Dd.

ARFID seems to be handled by and diagnosed by the speech and Language team round my way, they have a branch that is specifically eating swallowing. There is also a parent advice line on the local authority speech therapy website that triaged parents’ concerns. Might be a way in. Or via GP or school SENCO otherwise

Punx I told Ds's CAMHS worker last week that he is barely eating and was so exhausted that he struggled to get to school one morning but there is nothing they can do.

My dd has huge problems with school attendance too. Not directly related to eating but recently it's been stomach issues which I'm sure could be helped by diet. Dd agrees about that.

I think the problem for us is, she doesn't show many signs outwardly, and we've learned to live with this condition over the years by avoiding situations where we are eating together with others where possible, always taking a packed lunch to school and in many cases (eg on school ski trip) just putting up with going hungry.

MeMeMeYou - thanks for this, yes I've noticed it often seems to be treated as a physical problem (which I'm sure is right in many cases). In my dds case, I'm sure it is a sensory or mental issue.

Punx It's definitely more than picky eating and can have a really big impact on daily life. Hope you can make a bit of progress going forward and find the right kind of help for you Dd.

Yes i think it's hard for people that haven't experienced this to understand the impact on daily life!

One place i have found consistently supportive over the years is the Mealtime Hostage facebook group. If you're not already on that I'd recommend it

Mibb yes you are right, if a child isn't showing outward signs, it's easy for professionals to ignore. I found that with Ds's autism, he masks well, so school didn't flag any concerns until we pushed them to refer him about 3 years ago.

Ds hates school because of his anxiety, add on top that he is not properly nourished and he always goes in unhappy.

Camhs told me that if Ds was anorexic at the weight he is now, then they would have serious concerns and he would probably need a wheelchair. But because it's a different kind of eating disorder, it doesn't seem to be taken very seriously.

If you think it might be sensory with your Dd, have a look and see if you think occupational therapy might help? Ds is on the waiting list, so I'm not sure what difference it could make but we are going to give it a try!

I worry about the long term impact of eating so little. We also avoid difficult situations, I'm sure others judge us and think Ds is just a bit 'fussy'.

Will have a look at the Facebook page!

We didn't really get very far with trying new things in tiny portions.
As she's older and goes out eating with friends she will sometimes eat things that surprise me.
Her limited range of safe foods is wider than with your dd so more manageable.
I'm so tired though of throwing food away because it tastes 'funny'. She likes fast food because usually they are consistent in how they taste compared to home cooked.
I would definitely contact the gp from a physical health point of view to get supplements etc.

Ds8yo has diagnosed ARFID. He was 5yo when diagnosed. Extremely restrictive - he doesn’t eat a meal, as anyone else would describe it, just a small selection of individual foods. He also has diagnosed ASD.

The treatment involves an annual check in with the food people in the OT team. That’s it. Other than that, it’s ongoing ‘treatment’ at home.

The overriding aims are 1. not to make his eating any more restrictive than it currently is (which is seen as a positive in itself), 2. to move some of the foods that he only eats occasionally into the list of foods that he eats regularly and 3. To increase his sensitivity to foods that he doesn’t eat eg by touch (fingers), moving a plate with that food on it eg to the bin and then throwing it away, smell (giving it a sniff), taste (giving it a kiss).

It is not (for him, anyway), to make him eat any of it if he doesn’t want to. I also would never interfere with what he does eat so as not to ode his trust. For example, some people suggest adding a teeny bit of a new food to a bowl of heinz tomato soup (which he will eat), but I don’t do that as if he rejects the soup, he won’t eat it next time either, and then I’ve lost a safe food.

I supplement the yoghurt that he will eat with small quantities of liquid wellkid and oil, as I know that doesn’t affect his willingness to eat it.

Just for reference, these are DS’ safe foods:

Banana, raspberries, strawberries, grapes and blueberries
Bagels with marmite
Yeo valley smooth yoghurts
M&S cooked cocktail sausages
M&S fresh lamb and rosemary sausages
Any pork chipolatas
Chicken goujons
Flat garlic bread (not a baguette)
Waitrose essentials pepperoni or margarita pizzas (with more cheese than tomato)
Five flavours of walkers crisps
Nesquik chocolate cereal
Marmite sandwiches on whole meal sliced bread
Robinsons summer fruits squash
Apple juice

Thanks, WellTidy. Did your DS get diagnosed on the NHS?

I'm looking at his list of safe foods and thinking how happy I would be if my dd had those things on her safe food list! Which isn't to minimise your DS's problems but more that I'm realising that what we've got used to is really far from normal eating.

I guess I'm hoping there might be some more targetted help (eg some kind of therapy) that might help her. From your experience it sounds like that isn't the NHS approach (although I guess it may be different for different age groups).

Good luck with helping your DS to improve his relationship with food! It sounds like you're doing a great job with it. I know how tough it can be. If you're on Facebook, I'd recommend the Mealtime Hostage group for support if you ever feel you need it :-)

Yes, he was diagnosed on the nhs. Paediatrician who referred him for his ASD assessment also referred him to the food OT team. In my area, this is at the Evelina children’s hospital in London. But, as I say, there isn’t much in the way of ongoing treatment. It’s very long term in its goals.

I hope you get some help for your DD soon. I should say that DS doesn’t present typically for someone with ARGID, they said. He will eat a variety of colours, textures, temperatures etc, off any plate, bowl etc, in any place, and will tolerate anyone else eating anything else around him. This isn’t typical.

Thanks for the Facebook group suggestion. I will take a look.

Hi!
I’m so glad I found your post!
It’s so hard to find anything about this!
My 11 year old son has been like this since about 3 years old.
I’ve been at GP a couple of times but been told because he isn’t underweight and looks healthy there is no help available!
He only eats plain pasta, micro chips, McDonald’s chicken nuggets, ready salted crisps and bread!
Up until recently he would eat super noodles and sausage rolls but now won’t have these either!
It completely affects his behaviour and his mood which in turn affects the mood of the house.
I’m at my wits end and like yourself have swayed about bothering doctors during covid for something we always just learned to live with.
I have also been looking at felix Economokis but hesitant to buy the videos or sign up for the one to one sessions as it’s a lot of money, which don’t get me wrong if I thought it would help him I’d find the money, did your daughter not watch them?
Thanks for reading x

Hi lala 😊
It's so hard isn't it. There is a bit more info about arfid now but still so little support or understanding. I've found its massively affected my confidence and general enjoyment of life as for me, food has always been something that's brought me s lot of happiness (I worked as a cook for a few years and loved it and have always enjoyed cooking for friends etc)

I'd really recommend the Facebook group mealtime hostage if you are on FB. My daughter has never been underweight but I really worry about the lack of proper nutrition and how this might affect her in later life. Not just that bit how difficult it can make social situations as well.

If you DM me I can give you more info on the Felix E videos.

😊

We have a child with ARFID and ASD in our family. One thing we have been told is never to talk of "safe" foods, ever!

He is under the care of a specialist (not in the UK) and is receiving weekly sessions, which are helping, but very very slowly. Hospital also provides a special drink with all the necessary nutrients, which at least provides some reassurance that he is getting all his needs.