F.E.A.S.T's Around The Dinner Table forum

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Elibean1
New here, and very grateful for this amazing pool of collective wisdom and experience..

my 12 year old has always had a dodgy relationship with food, starting with a floppy larynx and reflux, surgery age 2 on her throat, etc. Always been skinny and small (like her dad).

age 10.5 she started restricting because girls at school were calling each other fat. We thought AN, took her to doctor who thought ‘on cusp of an eating disorder’ and read up on FBT. It went well, she became less anxious, we worked to empower her at school and she finished the year happy and healthy.

last summer, anticipating the move to secondary school, she started feeling sick and struggling again. This time, no thoughts about being fat just anxiety and ‘feeling sick’.

She loved her new school, made friends and found the work manageable. But she couldn’t eat at or before school and felt sick all the time. We were referred to CAHMS (UK) ED service who diagnosed ARFID and she’s had weekly CBT for anxiety since. Slow build up of weight, slow build up of school hours, she was starting to manage snack and lunch at school.

Personally, I’ve thought all along that she has ARFID and some AN traits too - as she dies have intermittent body dysmorphia. I’ve told the ED service, they were treating it as just another anxiety.

But as of last appointment when she’d put on 1.5kg in 10 days the AN thoughts are rampant. Last two days she says she wants to be skinny and is refusing to eat (with some exceptions). 

Shes not allowed school without breakfast, so she’s home today..I’ve got half a glass of milk and a pancake with sugar into her. But she’s doing flat refusals now (eg won’t finish milk) and I can feel my panic levels rising!  Also gutted as a week ago she was blooming: next size up clothes, happy, talking rationally about how she thought she had ARFID but also some AN type thoughts..

We have an appointment tomorrow. I’m posting to calm myself, and I’d love any advice going. 
Elibean
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Elibean1
Ps I read Eve Musbys book a year ago, and have lurked on AN forums with the sense that we were straddling a dual diagnosis....but haven’t dated post before because officially she’s ARFID rather than AN!
Elibean
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mimi321
Hi Elibean,

welcome and so glad you posted! This forum is for all ED's or even blossoming ones, disordered eating, etc. Most of our kids with EDs started out with some kind of disordered eating, so the sooner we can get guidance, the sooner we can tackle the beast!

I think it is common for one ED to morph into another, and I think ARFID is one that can typically morph into AN. It does sound like there are traits of AN coming out with the concern about being fat. I don't have experience with ARFID, so I'm guessing the approach to getting them to eat may be a little different. We have a great thread started here on offering meal support you might find helpful: 

https://www.aroundthedinnertable.org/post/meal-support-videos-10070503?pid=1307947505y

I think many might suggest, and I would agree, that given her increased resistance after finding out her weight, I would continue forward with blind weighings. That made refeeding in this house much more manageable. Many have also found that those ED thoughts decrease significantly once they get back on or above their historical growth curve.

This is a good article discussing setting recovery weights too low, just to be aware of this common issue. Also, I should mention it is best not to discuss target weights with our children, as this can offer a point of negotiation for ED, plus they are still growing so in reality it is a moving target. You may wish to discuss this privately with CAHMS or even mention during the meeting if it comes up, that you would prefer to discuss that matter privately. 

https://www.eatingdisordertherapyla.com/are-we-setting-recovery-weights-too-low/

You may find discussion with her about her possible AN to be unhelpful, as most suffer from anosognosia and are in denial or have no self-awareness of their illness.

I'm sure others will be along with some words of wisdom!
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. - A. A. Milne
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Elibean1
Hi Mimi, 

Its so lovely to be welcomed, thank you! And those meal support videos look really useful.

ive broached blind weighing twice but cahms  believe it’s ‘better to work through the anxieties’. With ARFID, that makes sense...not so sure with AN though. I’ll ask again.  

My D herself has said said she thinks she has anorexia as well as ARFID...but the next minute will say she wants to get thinner, not get well. She seems to flip in and out of moods and thoughts, just as I’ve seen described here. 

We’ve somehow managed to spot weight loss and refeed successfully enough that she’s more or less coped with life...not sure if that’s been good or ultimately made it harder for her to believe she’s under any serious threat? Perhaps she wouldn’t believe that anyway. 

No target weight as such (she’s back to her own growth curve, as far as we can tell) but I’m v worried about the mental side of things.

its so good to have ATDT - I do feel less isolated already.

tjanks again x
Elibean
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mimi321
Oh good! Please keep visiting and checking in!

If you mention to CAHMS that you were unable to get her to eat her breakfast (and that there were other flat out refusals) due to the anxiety of knowing her weight gain, I would think the successful completion of meals and maintaining of weight (and continued gain) would take priority.

If AN is developing, you might be able to keep it at bay by keeping/getting her weight up. Sometimes these AN thoughts come more strongly to the fore if there is a deficit.  For example her body is likely gearing up for more growing, but it actually needs extra to fuel that growth. They often grow out then up. With non-ED kids, their body signals hunger and they eat what is needed. With ED kids, this mechanism is disrupted by ED so we need to give them a little extra insurance (we often have to go a little over their traditional growth curve) so they don't fall into (or back into) ED's grip. If feeding becomes too challenging and there is a weight loss, these anxieties will likely grow stronger as the deficit becomes larger. The anxiety around weight gain is often triggered (or at least strengthened) by the deficit and is compounded more as the weight goes down, making your job that much more challenging.

Maybe you will be able to overcome that anxiety and still successfully feed her. I'm sure others here have had this issue with CAHMS, so not sure how they handled it. Whenever I saw a new doctor or nurse I was very insistent about the issue because I knew what the fall-out would be and it was already hard enough to get her to eat what she needed. Luckily in all but one case, they respected that. 

In the meantime there are a lot of good strategies in the meal support thread that will help you work through outright refusals. Hopefully you will find one that works with your D.

Also, just to let you know that this forum is public, so you may wish to change any proper names for your own or your daughter's privacy. If you need any help with that I'm sure an administrator can help you there.

Hope your appointment goes well tomorrow! Best wishes! 

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. - A. A. Milne
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Ellesmum
Hi there, 
Welcome!  My CAMHs also like to go with open weighs, but I’ve insisted a couple of times that I don’t want any weighing at all, for us sometimes things are going well and the evidence of my eyes is enough. I call ahead to tell them no weighing today under any circumstance and they’ve respected my wishes.
We know our kids best and know when we’re walking a tightrope handling emotions.

When I look back, as I so often do I see clearly my d had an issue with food from weaning, be that from an early choking episode, tension at the table, a mouthful of something horrible by accident or a combination of all those. Despite my efforts to never make a fuss, home cook a variety of foods, and all that ‘right stuff’ she never had much appetite or interest. She was a milk drinker to an advanced age which is probably what kept her the right side of healthy (I mean gallons of milk, I used to joke I should buy a dairy herd)

As the tweenage years came and socialising began, sleepovers and such she ate lots of ‘junk’ it worried me somewhat but again I didn’t make too much fuss or insist on vegetables.   She became orthorexic around age 13 and exercise addictive, like so many I encouraged the ‘healthy eating’ and soon enough she slid into full blown AN. 

It it is true from my experience CAMHs set weights way to low and issue advice that colluded with ED, my education has been from here and Eva Musby mainly, I use CAMHs to get school onside and for medication. 

My my daughter is now eating a huge variety of food and drinks,  so take heart, it can be done although it’s not easy.  Mine has only just started school again part time having been off for almost a year. 


Sorry for the essay, just wanted to show you’re not alone, keep asking, keep posting and keep feeding.  
Ellesmum
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tina72
Hi and a very warm welcome from Germany,
they way down from ARFID to AN is often very short.
Here are my 2 cents:

"ive broached blind weighing twice but cahms  believe it’s ‘better to work through the anxieties’. With ARFID, that makes sense...not so sure with AN though. I’ll ask again."
Do not ask, insist on blind weighing. You are the captain of that ship, you know her best, you set the rules.

Did I get that right, you have already done FBT? Then go back to magic plate, plating all food, fight AN behaviour and you will get her back.

You are not alone, we are all here to help you, ask your 1 million question and here it goes.
Ask at the appointment where you should go when she refuses to eat or drink more than 24 hours. Normally that is a case for A&E then.
Keep feeding. There is light at the end of the tunnel.
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SeaLion
A warm welcome to you, Elibean 1, from a mother whose daughter's ED diagnosis has been an ever-shifting thing... ARFID with aspects of AN is how I used to describe it.  She'll have a new assessment in a couple of weeks, so who knows what they'll call it then... I remember how relieved I was to discover that no matter what the ED is called, full nutrition is the remedy, especially in early treatment.  I think it's very wise of you to stay attuned to your D and respond accordingly, just as you would if she had a flu and had fever one day, coughing another day...  it is actually helpful that your D is sharing her AN thoughts, so that at least you know they are part of the problem.  So sad, but she's showing where she needs help showing ED the door.  You can jot down notes on a regular basis and then share them IN WRITTEN FORM with her providers, if you're not sure they're taking the shifts seriously. 

My D never admits to anything about body image, however, her treatment providers have gotten the picture that sharing her wt. stats tends to backfire for her... whether she admits to caring about weight or not. 
Warm wishes to you and your daughter. 
Older and Wiser
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Elibean1
Thank you all so much xxx it really helps to know we’re not alone with the ARFID/AN mix! 

We have done a version of FBT, yes, but found that allowing some flexibility of choice (as in, pasta or shepherds pie) helped because of the ARFID element. I was told what calories daily to go for, and did that - but instinctively upped it when her anxiety didn’t shift. 

She then got happier but also put put weight on very fast, and as she’s almost as scared if exercise as she is of food...and short....she could see the results, even without scales and cahms, and the self disgust reared up. 

I’m hoping tomorrow helps clarify things...and yes, I’ll certsinly take charge of the weighing thing, thanks.

wishing you and all your children well! Xx
Elibean
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Elibean1
Ellesmum, please don’t apologise - I’m an ‘essay writer’ extraordinaire 🙂

totally relate to the milk drinking, it’s been her lifeline. No orthorexia or ‘fear foods’ (or exercise) here, but all the rest is the same. 

Im glad your girl is doing well - and am encouraged by all of you. Onwards. 
Elibean
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Elibean1
Oh SeaLion, yes, I really relate! Admitting to body image stuff is new here - and at first I thought her saying ‘I was scared to say it before’ was a sign of better health. Perhaps, weirdly, it is? But she seems to have flipped from anxiety to rage and disgust...

Good luck with your new assessment, and thank you - it’s v reassuring as you say to know whatever the ED it requires food to heal xx
Elibean
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scaredmom
Hi Elibean,
I too welcome you to the forum and hope you get the support and information you need. 
There are a few parents with children who have ARFID here and hope they come around soon too. atdt31_US is one person who comes to mind and you may wish to search her threads. 
I will try to find some for you too and paste them here. 

Just a caution: as this is a public forum you may wish to edit yours and your D's name out of your posts. This forum is searchable on the internet and could identify you and your family. 

If you need help with that you can back email any of the moderators (click on their name) or post it here and we can help.

Let us know how we can help. There such a wealth of real life experience and people who wish to give back.
XXX
Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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scaredmom
http://www.aroundthedinnertable.org/post/anxiety-and-target-weight-in-arfid-10053545?pid=1307795430

http://www.aroundthedinnertable.org/post/new-here-wanting-help-diagnosing-8-year-old-7322334?pid=1306

I hope there is something here that helps you.
XXX
Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Elibean1
Thank you scaredmom, especially for the heads up re anonymity....for my D’s sake, I should do that editing. I’m a techno-dunce so any tips on how to do that would be great!
Elibean
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scaredmom
Click on the downward arrow top right of your post then click the pencil icon and edit as required.
if you need help let me know.
XXX
Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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scaredmom
For your name you need to edit your signature on your profile.
XXX
Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Elibean1
Thank you xx done D’s, my signature isn’t my name so that’s fine xx
Elibean
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