Think my daughter has ARFID

[Sadless]

I think my daughter has ARFID. It's been going on a few months now and she's losing around 3lb a week. She spoke to the Dr's about about the weight lose and her issues with food and the Dr's just said well your in a normal weight for your age. Shes on anti depressants and seems to be having panic attacks alot. Shes started to have really bad shakes while she's out and then she will eat something. She looks completely different then she did a few months ago and I don't know how thin she would need to be before the Dr's think she needs to see someone about it. I think it should be the earlier the better before she does damage to her body. Any advice

Sal

Ds has a diagnosis of ARFID. It was a nightmare trying to get a diagnosis and treatment. And we had to push for funding for a referral to the Maudsley Hospital in London who have a specialist ARFID team. As we couldn't get any support locally. Many local ED teams won't treat ARFID, ours certainly won't. Even when Ds was quite unwell.
Dietitian referrals can be useful, as can sensory occupational therapists who can support sensory issues around food, if that's a problem for her. If she has ARFID she could have lost a lot of weight, but unlike anorexia for example, she shouldn't have any issues around body image.

If you feel that that her physical health is at risk, then also make sure that is checked by the GP.

I would demand a second opinion ideally with an ED specialist.

She rung the Dr's today to see if she could move an appointment forward with the mental health nurse and was told that the lady was away so couldn't get another appointment sooner. I am wondering if I should ring and speak to them see if they can help in any way.

Sal

I am making her a Dr's appointment and taking her. I want her know that she's telling them the truth. She's shaking really bad.

Sal

Quick update she went to to Dr's her weight has gone from 69kg to 61kg since September the Dr's scales. But Dr's say she's still in her ideal weight. She was given a mood and food sheet to fill in and was sent for a blood test the results came back. She has been prescribed folic acid and iron tablets to be taken for 3 months then to take over the counter vitamins. She told the Dr that she does have issues with her body but Dr's don't think it's a problem.

Sal

Your doctor clearly doesn’t have experience with eating disorders. The fact she is still in the healthy weight range is irrelevant. She’s lost a large amount of weight and is articulating very real and serious issues with eating. How much is she currently eating a day?

She doesn't live at home so I am not really sure what she's eating. She tells me she's eating pasta salads from Asda. But is clear she's not eating much shes admitted that she thinks shes fat
I don't know how thin she will have to go before the Dr's think she needs help. She received a text from the Dr's about the prescription and on her NHS app she saw the blood test results. Some alt level was out related to the liver no idea what that means.
Sal

What makes you think it’s ARFID? Sounds like it could be anorexia. People with ARFID only eat certain things/brands etc and are restricted in what they eat, not how much. If she’s saying she thinks she’s fat and losing lots of weight it’s more likely to be anorexia. It’s important because her mental health nurse is likely to have dealt with anorexia but ARFID is less common and the nurse might be worried about getting it wrong so may decide to refer elsewhere, which could take longer.

My understanding is that arfid is largely sensory driven and is about tastes and textures of foods and only being able to tolerate a very small number of foods. I've worked with kids who,after 2 yrs of treatment have increased their range of foods to 8, eg Tesco chicken nuggets, one brand of waffles etc.

If your daughter thinks she's fat and it's impacting on her body image, it sounds more like anorexia.

She definitely needs to be seen by someone. Can she see a different GP?

Why do you think ARFID instead of anorexia? My son has ARFID: he has a very limited diet and low appetite. He doesn't worry about getting fat - on the contrary, he is concerned about his low weight. He is autistic and struggles with anxiety and sensory issues. Many people with ARFID are autistic.

I'd be concerned that your daughter is developing anorexia, especially if she's expressed a fear of getting fat. Or she could be struggling with anxiety and this might be having an impact on her eating.

I think you should see another doctor.

www.beateatingdisorders.org.uk/get-information-and-support/about-eating-disorders/downloads-resources/

Good resources here on what to say to a GP.

If she isn't living at home is she an adult or a child living with another adult?

It doesn't sound particularly ARFID related unless her issues are sensory based or because she's had a bad experience vomiting)choking. With her additional MH challenges it sounds more anorexic than anything.

Get her to make an appointment at another Drs for a second opinion.

DD has ARFID, what you are describing does not sound like that, it sounds more like anorexia nervosa. I'm so sorry that you and your daughter are going through this.

I don't know she will only eat certain foods but has always been like that. She says she likes to be in control of what's she's eating. I wouldn't even know if she was making herself sick. Her mental health has been really bad in the last few weeks the Dr's upper the antidepressants to 40mg and she was constantly crying.
I have sent her the beats link hoping she might do the online chat.
I early September had to have interviews at work with managers from different stores (works at McDonald's) after a 36 years kitchen staff was sending inappropriate messages to her. He's got sacked but she said she got more attention being thinner even when she didn't like it.

Quick update she's been referred over to a eating disorder clinic they want bloods and a ecg in the next 2 weeks. She's under 9 stone now but from being 12 stone you can tell the difference. Hopefully she can get sorted out now.

Thanks
Sal

Glad to hear your DD has been referred to a clinic. I hope she gets the help she needs now.

I hope that the referral helps and your DD improves soon.

So glad she has a referral @Sadless

Sounds more restrictive anorexia based? Only eating certain foods can be the restriction on controlling their diet within their ED rules?

I have Afrid but had no anxiety or weight issues attached. (Well anxiety if i hit a bad texture) i would eat as much as possible if it was the right texture food, i would not eat if i had a bad texture/taste as it would put me off all day.
I have Autism.

I was misdiagnosed with anorexia in my teens and sent to an ED unit...so saw a variety of behaviours depending on the ED they suffered with. Anorexia can be very limited in the variety of foods they will eat as it gets worse the more of a reaction and anxiety they have for eating what they feel is forbidden, but back then they had two subtypes in the criteria one restrictive and one binge/purge not sure if its changed over the years.

She had a mental health review in the morning and received a text in the afternoon about the eating disorder clinic. She's booked in on the 4th for bloods and ecg but glad it at the Dr's this time. . I think in her head it's part not wanting to go make food but then sometimes she says she will eating then feel fat. Someone gave her a cuddle at work and they said that they could feel her ribs and she said her ribs are sticking out but she wears baggy clothes. She's coming here today for Christmas dinner I will be able to see how much she's earing.

Thanks
Sal

How is your DD doing now @Sadless?

Hi sorry late reply she saw a dr at the hospital he said she could possibly have asd and would write back to her drs to get a referral.
but she’s back to normal now gained the weight back and abit more . Don’t know if it was an eating disorder but think she realised she couldn’t live like that. She was hardly eating at all and people at work were commenting on it.

thanks Sal

How does she feel about the referral? Does she see it as a positive thing to help her understand herself better?

She’s on antidepressants and is doing ok . She hasn’t heard anything back from the drs yet and it’s been a while. She went back to uni last week and that seems to put her over the edge . She rung me up crying and made a drs appointment to try get her meds put up . I am just glad she’s eating again.

I bet you're glad that she's eating. Has she reached out to Student Support?