Why is there no help for ARFID??

[Arfidsupport]

Dd (5) has ASD and ARFID. She was referred to see a dietician who just tells us not to worry about food just see everything as calories and that’s all that matters that she eats enough calories each day and take in enough fluid.

Im so worried though as he diet is so limited. There’s no therapy at all as we were told CAMHS won’t deal with it and there’s no eating disorder service for her age.

She rarely eats breakfast and often won’t even drink till midday. She only wants to eat a narrow range of quite unhealthy / bland foods and keeps dropping ‘safe foods’. Luckily she will eat dry cereal which at least is fortified with vitamins. She also eats plain crackers, chocolate buttons and baby food pouches (only 2 sorts). I keep asking the GP is there anywhere we can be referred to ? Is there really no help at all for children with this ED? I’d even go private if we have to.

Also she has a 6oz cup of SMA formula each night as we were never able to transition to cows milk and the dietician has said it’s great for calories and nutrients

I think a big part of the problem is because the reasons are so complex and overall they don’t fall into something that can be treated as shit as that is.

ds has ARFID and when we tried any sort of therapy based intervention it just made things worse as for him talking about food is a massive trigger.

he has been tube fed for the last 6 years because of the severity of his restrictions but that’s not treating any underlying issues because there isn’t really anything we can do about them

ARFID is such a relatively new diagnosis that there is a paucity of research on how best to help, and a fair few strategies that have been tried seem to make things worse. So at present the focus is on not buggering up safe foods, keeping it all low key to avoid stressing the kid out and making it worse, and when in a good place gently trying chaining foods.

I’m just finding it so hard to deal with

In some areas there are specialist services. I do work alongside one of them in my area. They focus on offering SOS therapy alongside some psychological support for families. It's worth looking up the SOS approach if you haven't heard of it.

However, ARFID is very difficult to 'treat' and it is often a longstanding condition where, although gains are made, it often happens very slowly.

I'm a community paediatrician and look after lots of children with restricted eating.

Sometimes, if you carry on using all the strategies that you have been told to use, things might improve or you might do everything right for years and it not improve. It's very hard to make much headway with it to be honest.

Therefore pragmatically, I always tell patients that if they are growing, they are getting enough calories. Try and get a multivitamin in her in some format to avoid vitamin deficiency and then at least they are safe. The truth is, you cannot make them eat.

She's also young, so lots of the psychology driven services don't accept referrals until they are 8 so this limits things.

For the kids I see the dieticians will run a restricted eating workshop and give advice about supplements etc, psychology will give some advice about restricted eating and when they turn 8, I can refer to camhs, who will tell them the same stuff again. If they are really bad, I can send them to a tertiary centre.... Who will tell them the same again.

Have a look at the beat eating disorders website as there is also some support available through there.

Personally, I also have an ASD restricted eater at home (although not as limited as arfid). It's frustrating and difficult and I constantly worry about the amount of pringles she eats ....... But her BMI is on the 3rd centile and she has to eat something!

Sorry, the above isn't very helpful. There is a good book I recommend called "helping your child with extreme picky eating"

Sorry just another thought, there are some private companies and charities which offer support too - might be worth looking into?

If your on Facebook there is a great group called living with arfid. Parents and carers. It is full of people who get it!

It’s really helpful thankyou so much. I think I just get so stressed as I worry about deficiencies and long term health and I literally wake up at night worried about it. Luckily her weight seems ok (I have no idea how as she doesn’t eat that much but it must be enough). It’s hit and miss with vitamins currently we manage to hide 2.5ml of a liquid supplement in her milk but when we tried to get more in she recognised it and wouldnt drink it

Have you tried giving her higher quality versions of food. Like purple sprouting brocolli instead of regular brocolli

Will she eat pancakes? I used to be able to get 1500 calories into a batch of pancakes when DD1 was just out of hospital with an eating disorder. Sometimes you can swap out ingredients to increase calories without changing the appearance.

No she seems to really only like crunchy things or cold smooth things (fruit pouches only now as we lost yogurt as a safe food a few months ago)

We always put fruit or a vegetable on her plate with every meal but she just totally ignores it won’t touch it or try it at all. I think I’m hoping that the fact she tolerates it in her plate is a good sign but she’s never actually tried it. When we started weaning her and would give her things like steamed veg she would just ignore it or drop it if it was placed in her hand she just looked terrified

@Arfidsupport and @LeanIntoChaos this approach has been really helpful for my DS who has anxiety (but not ARFID, this is the approach we have used for anxiety with a lot of success).

https://pubmed.ncbi.nlm.nih.gov/33464594/

Our daughter had an extremely rigid and restricted diet. Diagnosed autistic SPD ( would have been diagnosed with ARFID later recognised)
She saw a paediatrician 6 monthly to be monitored.
We wanted a referral to the Birmingham food refusal service but don’t live near and it wasn’t possible to be referred.
At age 12 she was invited to take part in a documentary. We were so reluctant as she was at secondary school.

We agreed ( well she did) as she got to see the wonderful Dr Gillian Harris and Dr Liz Shea ( both Clinical psychologists and experts in this area)
It was the first time we felt truly understood and met other parents (children not as restricted as our DD )
They did manage to re introduce one previously rejected safe food. A bit of a breakthrough.
Any books or resources by these wonderful Psychologists are highly recommended. Liz Shea’s latest book is dedicated to our daughter.
We also had a book by Brenda Legge Can’t eat Won’t eat and there are anecdotes in that about our DD. Not sure if it’s still in print.
Sending hugs and support.

It's incredibly stressful - and I keep hearing how lucky I am that mine has some decent foods in her very very restricted pattern, it doesn't feel lucky!

I've had this group recommended to me - ignore the twee name, I'm told that they are really very good https://magnificentmunchers.co.uk

No useful advice but it may reassure you to hear this.

My DB had very restricted eating and, I'm sure would nowadays, be diagnosed with ASD and ARFID. My mother swears he ate nothing but white bread, cheese and Heinz tomato ketchup for at least 5 years and used to worry herself sick about how he would grow, develop, etc.

He began eating slightly more as a teenager and really expanded his eating range while at university. As an adult he is over 6 foot tall, is incredibly clever and is very successful in his profession

https://icesupp.com/products/berries?variant=48428824658196&country=GB&currency=GBP&utm_medium=product_sync&utm_source=google&utm_content=sag_organic&utm_campaign=sag_organic&gad_source=1&gad_campaignid=21611743372&gbraid=0AAAAA9t_F446_HD6oNQ1KKT3nnQ-Kq1zw&gclid=Cj0KCQjwxo_CBhDbARIsADWpDH72umszFMhfKgJfMig4dInByq5zNEAyWVutUOX7hfaFrPwDnHSnBioaApLGEALw_wcB
These have about 3 times the calories of a fruit pouch. Worth a try?

We had support from Occupational Therapy and CAMHS. neither made a huge difference but my child will now at least touch and be near different foods (though he still only eats a very narrow range of food 90% of which is plain carbs).

Yogurt got runnier to save money but if she likes thick yogurt in a pouch there’s grahams skyrr

Don't want this to come across the wrong way, but try not to stress as I'm sure your child can pick up on it. My ds's friend has AFRID ( pals since nursery now late teens) and he eats more at my house than at home ( yes. restricted and beige) and I'm sure part of it is that I don't really care if he eats at mine and my indifference to his eating, makes it easier for him.

My dd has Afrid and I think I had it as a child/young adult.
I would blend fruit and veg into anything I could. Dd ate bolognaise so veggies in the sauce. She loved smoothies so I’d blend fruit, carrots in. I even blended veg in to ketchup. She liked nuggets so I bought the fresh ones from Tesco rather than reformed ones. Also a multi vitamin every day. I would prepare and plate food however she asked but I’d alway add something in she didn’t eat to encourage her. No using food as reward/bkackmail, meals were put out at the table but she could sit as long or short as she wanted. I’d Leave the plate out after she finished in case she went back to it. Do cooking together, to encourage enjoyment of food.
mum in my forties I still have some issues around food but I have a varied and healthy diet.

Did is in her twenties, like me she has soon issued around foid but she had improved significantly