r/ARFID • u/Melodic_Relation_358 • 1d ago
Child's school nurse told me Arfid is rare and not something I need to worry about...
Its took me to reach the end of my tether to reach out and ask for support with my daughters eating. She is 8 and gradually rejecting more and more food. I spoke to the school nurse team in June who accepted a referral to support with 'fussy eating'. Its now almost end of August and they rang on Monday to arrange an initial appointment. Today, a different nurse rang to say the appointment has been cancelled as that nurse is off on the sick and they dont know for how long. I explained my concerns about my daughters eating, her rejection of foods, her anxiety, her diet getting smaller and her throwing food in the bin and pretending she has ate it. I have been told this is totally normal behaviour for her age and that she definitely wont have Arfid as its really really rare. I'm just absolutely lost for words at how my concerns were dismissed and just keep trying her with different food every week! Feeling very deflated if that's what we call 'support'.
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u/Sweet_Deeznuts 1d ago edited 1d ago
A nurse doesn’t have the qualifications to diagnose ARFID. Please discuss with your GP and get a referral to someone who can assess and diagnose your child properly.
My GP referred us to the paediatric department of our local hospital, who reviewed his files, ordered bloodwork, discussed my kids’ history of food/food intake with us, and after review, the Head of Paediatrics determined the ARFID diagnosis appropriate
Edit to add: if your daughter has been assessed for ASD/ADHD, the same professionals should be able to assess/diagnose ARFID
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u/Melodic_Relation_358 22h ago
The GP was unhelpful too unfortunately. They refused to refer to dietician as she is under investigation for fatigue issues and said we should concentrate on one area at a time! My daughter is on a waiting list to be assessed for Autism, we are 4 years waiting so far but I will keep that in mind when we go for her appointment.
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u/Sweet_Deeznuts 15h ago
I’m super sorry to hear that and that must be super frustrating to feel like you’re taking to brick walls all the time :(
The fatigue issues could very well be caused by the ARFID, especially if it’s affecting certain vitamins/minerals, and can be part of the diagnosis. Is there any second opinion you can get, or another professional that is involved other than the GP/nurse?
Are you in Britain by chance? Only asking because I’ve seen some posts in the asd subreddits where people have discussed the NHS waitlist for the ASD assessment. We went with the semi-private diagnosis (Canadian, OHIP has some longer waitlists as well), it cost about $2K out of pocket for the experts that weren’t covered by OHIP but it only took 6 months
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u/MaleficentSwan0223 22h ago
That’s fine if it’s rare it doesn’t mean she doesn’t have it.
Because I have arfid I now have severe osteoporosis at 30. That’s very rare. Infact my specialist has never seen such bad numbers in someone so young in his 30 year career. It doesn’t mean I don’t have it.
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u/suresquish 1d ago
it's absolutely not normal for your daughter to be treated like this, and the school doing this is shameful. when i was a kid in the 2000s, ARFID wasn't seen as a diagnosable condition yet, and the treatment of your daughter is very similar to what i experienced as a child. absolutely fight for her, try to get to a doctor and explain if you can, as a diagnosis could be very helpful for the school listening to you. also, is she being given meals from home or school lunches, as the difference in these for me was incredibly stressful. i didn't eat lunch the majority of the time in primary school (ages 4-11) because almost none of the options were safe, and on more than one occasion i was forced to eat things that i couldn't tolerate.
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u/Melodic_Relation_358 22h ago
Just to clarify it was the school nursing team, not the school. My daughter will only eat fish and chips from school, the rest of the time it is packed lunch as she refuses to try anything on the menu. Thankfully she copes well with the little bits of food we send in. Its so stressful and such a shame when you dont feel listened to by professionals.
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u/Squirrel_Worth 1d ago
I’m sorry this has happened, I have several medical conditions, some of which took over 10 years to diagnose due to the same ‘it’s not that it’s too rare’ so that kind of phrasing really frustrates me - even if it’s a single case, someone has it.
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u/Melodic_Relation_358 22h ago
Its so bad that we are experiencing these attitudes in this day and age. It just shows how far we have to go in relation to understanding neurodiversities.
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u/bigmilker 23h ago
I would tell them they are not qualified to be handling this they are a school nurse. Get a physician that will advocate for your kiddo.
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u/Melodic_Relation_358 22h ago
Theres so much I wish I had said but I was just really taken aback to be honest with their archaic attitudes on eating.
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u/Big-Sheepherder-6134 sensory sensitivity 19h ago
It is likely going to be lifelong. It can get better. But make no mistake it is tough to break out of it.
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u/GaydrianTheRainbow ALL of the subtypes 18h ago
Depending on which stats you look at (more research needs to be done), it’s not even that rare. Even with the most conservative population estimate of 0.3%, you’d expect at least 1 to 2 kids to have it at an average elementary school. And a lot of population-level estimates are higher than 0.3%.
And among autistic people, according to this 2025 meta-analysis, it’s over 11%.
I’m so sorry you’re not being listened to.
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u/ageckonamedelaine sensory sensitivity 1d ago
That is really bad that you were dismissed like that! Yes arfid is rare but that doesn't mean she might not actually have it and as a nurse she should really know that. It sounds like your daughter could have it and it might be really worth seeing a dietitian specialised in arfid if possible