ARFID - new publication from the BDA

[Verbena17]

From BDA - The Role of the Dietitian in the Assessment and Treatment of Children and Young people with Avoidant Restrictive Food Intake Disorder (ARFID):
Written by the BDA ARFID Special Interest Group

www.bda.uk.com/uploads/assets/3d62ac89-2837-46fb-987ae870b4b2a617/BDA-ARFID-Position-Statementlogos.pdf

Thank you

@SiouxsieSiouxStiletto hope it’s helpful.

Yes I've read it and it's extremely interesting. She's been seen by Community Paediatrics recently, she's going through assessments for ASD & ADHD and we mentioned that it sounds as though she might have ARFID as well.

We are having trouble getting anti-anxiety medication at the moment. GP says she needs it but won't prescribe as she's under 16. CAHMS won't see her because she won't engage with Counselling. She can't engage with counselling due to SLT issues and there's a 12 month waiting list to see SLT. Explained that if they could produce an SLT with experience of dealing with girls with ASD who mask abc have no emotional language, she'd probably engage, git tumbleweed in responses.

So I need to call the GP again thus week to see if she will prescribe now that CAHMS have refused to help. GP did say come back if we had no luck.

How did you go about getting a diagnosis for ARFID?

I wish ARFID had been known about when I was a child. It would have saved me a lot of grief.

Me too - I am still suffering at 50.

Can I ask what happened to you?

Sorry that you are suffering @Iloveautumncolours

Just reread my long ramble. Sorry about the typos 🤦‍♀️

My adult son sent me this recently. It seems to explain the fact that he can't eat any fruit at all, despite eating practically anything else-which has always baffled both him and us!

@SiouxsieSiouxStiletto - think I explained in the other ARFID post you commented on. 😊

@SiouxsieSiouxStiletto but basically went to GP and they referred to our Health Care Trust’s Paediatric Community Eating Disorder team.

Here it is….@SiouxsieSiouxStiletto
Hi @SiouxsieSiouxStiletto - so when DS was 8, he was assessed by a community paediatrician who mentioned she felt he had ‘selective eating disorder’….which has since been renamed as ARFID.

Then in 2018 I think it was, maybe 2019, he was assessed by our county’s paediatric Community Eating Disorder Team, who used the PARDI assessment (created by Dr Rachel Bryant-Waugh) to confirm he met the criteria for ARFID diagnosis.

For your dd, I would look online for details of your Paediatric Community ED team and then ask your GP to refer your DD to them for assessment.

We used the Birmingham food refusal clinic and Liz Shea for an ARFID diagnosis. Locally there was zero support at the time. Lost count of how many times my child was fobbed off.

Does the Birmingham FR Clinic still exist?

It would have saved me the endless badgering from my parents to 'Go on, just try a little bit' at every dreaded mealtime. It might have made them understand that I wasn't being fussy, and that okay they went through the war and rationing, and that yes, there were 'people in Africa who were starving' and yes, I should be thankful that there was food to eat, and so on and on and on and on ad infinitum.

If I couldn't eat it because I couldn't bear the taste, or the smell, or the texture, or even the look of it, and even thinking about putting something in my mouth made me heave uncontrollably, then if they'd known about ARFID, maybe they would have realised it wasn't my fault.

That’s really sad @twolilacs . That sounds really stressful. How are you now with eating?

Thank you @Verbena17, not quite sure how I managed to miss that.

@twolilacs that sounds so awful. I suspect that I have it to although to a lesser degree. Luckily I had an amazing DF who would bend over backwards to make sure I was fed and just ignored my M who seemed to have the same view as your DPs.

Well I'm considerably older now and do eat most things. I still have trouble with some food though - I can't even go in the kitchen if DH is making porridge, the smell makes me retch for instance. Not too keen on waxy new potatoes either, and avoid avocado and aubergine like the plague.

I’m glad things are much better for you now @twolilacs . You’ve also given some hope that maybe one day, my son’s ARFID will be significantly improved.

Ds was assessed and treated by the team at The Maudsley Hospital in London.

https://mccaed.slam.nhs.uk/professionals/our-services/afrid-clinic/

We don't live in London but managed to secure funding from our CCG. He only got 10 sessions and was then too old for their service. He still struggles a huge amount, but I don't think things are as bad as when he was initially referred to the Maudsley, who are excellent and real experts on ARFID.

@Punxsutawney that’s great that your DS had some sessions at The Maudsley and that things have improved a bit. I think Dr Rachael Bryant-Waugh works at the Maudsley doesn’t she (Dr who designed the PARDI assessment)?

Yes it is Rachel Bryant-Waugh, I think she did design the assessment. The Maudsley team also do a lot of research too. Ds was treated by one of their clinical psychologists, who was excellent, just wish he could have accessed more sessions. Their assessment and diagnosis is done by a multidisciplinary team and it was the first time I felt we had come across professionals that understood ARFID.

It took years to get to the stage of the referral and Ds had become physically very unwell. Our local eating disorders team refused to see him even when he was so weak he couldn't get out of bed. They refused as they said they are not commissioned to treat ARFID. It was Ds's CAMHS nurse who did the referral to the Maudsley in the end. Still took 6 months for funding to be agreed.
Ds is 18 now and there is zero support for his eating disorder. He refuses to eat in front of anyone, so always eats alone. He's still very thin, but we are in a better place than we were. Would be great if there was ongoing support, but there just isn't any.

@Punxsutawney our adults ED team told me that they now have funding for 18+ in the adult eating disorder team. DS is being discharged from the paeds ED team due to turning 18 and it had seemed as though there would be nowhere to go but they’ve recently told me there is funding for ARFID treatment within ED teams (as it should have all along).

Verbena17, that's great news that your Ds's care should continue post 18.
As far as I know our local adult ED team still don't treat ARFID. Although I've not checked for a while.
The psychologist at the Maudsley tried her very best to get some continued support local to us, but she came up against a brick wall. CAMHS were not interested and kept saying there was nothing.

I attended a talk recently at a group we go to for parents whose children have ASD. The speaker told the group that ARFID is not an eating disorder and it's autistic fussy eating.
There is still so much misinformation out there still about ARFID. Calling it fussy eating or people claiming to have ARFID, if they dislike just a couple of food items.

It really can be serious eating disorder that can cause a multitude of issues. When Ds started at his specialist college, a member of staff said to him "so you're one of those fussy eaters". It's so misunderstood.
We plod on, Ds is not as ill as he was, but we are far from in a good place. Getting Ds support for any of his difficulties including his eating disorders has been a huge fight, that still continues.

Thanks @Punxsutawney . Like you say it’s a long hard struggle to get support. They’ve only so far agreed to assess him and have said it all depends on how accepting of support he is - he isn’t keen on CBT type therapy for his anxiety. But I’m hopeful that they can at least assist the ongoing GP care for the physical stuff that has to be kept an eye on.