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

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atdt31_US
I am wondering if others also want a sounding board for an ARFID kid where the diagnosis is based on low weight due to low volume of input but where the "selective eating" or "fear of choking or fear of vomiting or fear of x" is not a factor.  I continue to think this subtype is not very apples to apples on some of the other EDs and I find myself feeling like I am inventing the wheel on a daily basis.  If your kid is similar, and you want a thread to bounce stuff off others in terms of what is working, what is not, how is your kid progressing, what to expect at various ages, etc .... reply below and maybe we can use this thread for these matters that don't fit great in the context of threads having to do with refeeding an AN kid or even a once-normal-weight ARFID kid who developed a choking fear or similar.   Also, I just sort of wonder how many of us are out there.

I'll start -- my d will be 13 later this month.  Pre-pubertal.  We do a version of refeeding that requires a parent-monitored morning shake; a school-nurse-monitored snack; a very loosely monitored lunch at school by teachers; a shool-nurse-monitored afternoon shake; an honor system after school snack at home with twin but no parent; a parent-monitored dinner; and sometimes dessert or snack before bed depending on what life delivered that day.  By doing this plan for the last year, we got her to gain a little over 25 pounds.  She went from the "less than the first percentile bmi" to the 19th percentile (12.7 to 16.5).  Current treatment concerns relate to how to get from reliance on shakes to table food; how, if , when to train her how to eat enough on her own when it appears unlikely it will ever be intuitive; does anxiety need its own treatment now that we have gotten so much more healthy and anxiety has reappeared after having seemingly lessened after we hit the weight charts. 

Anyone else want to share their ARFID/volume story?

Editing to add the DSM criteria for ARFID -- the subtype I am talking about here is in green.

Avoidant/Restrictive Food Intake Disorder (ARFID)

 According to the DSM-5 criteria, to be diagnosed as having ARFID a person must display:

  • An Eating or Feeding disturbance as manifested by persistent failure to meet appropriate nutritional and/or energy needs associated with one (or more) of the following:
  1. Significant loss of weight (or failure to achieve expected weight gain or faltering growth in children).
  2. Significant nutritional deficiency
  3. Dependence on enteral feeding or oral nutritional supplements
  4. Marked interference with psychosocial functioning
  • The behavior is not better explained by lack of available food or by an associated culturally sanctioned practice.
  • The behavior does not occur exclusively during the course of anorexia nervosa or bulimia nervosa, and there is no evidence of a disturbance in the way one’s body weight or shape is experienced.
  • The eating disturbance is not attributed to a medical condition, or better explained by another mental health disorder. When is does occur in the presence of another condition/disorder, the behavior exceeds what is usually associated, and warrants additional clinical attention.
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
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mtkmbc4
Thank you for starting this thread!

Here’s my d’s story in a nutshell:

Almost 14 year old, historical BMI in 50-75% range from 2-12, mid puberty now. Always has been low quantity eater but kept growing by grazing. Developed diarrheal illness, abdominal pain and sudden 10 pound weight loss requiring hospitalization, every GI test out there. Diagnosed with intestinal parasite infection and treated but by then had quit eating altogether and required NG feeds and later IV nutrition, both for a few months. Has gained nearly 20 pounds since last year, BMI % just under 50% again but with amenorrhea after having only a few periods before getting ill.

Dx as ARFID due to fear of eating related to abdominal pain and diarrhea but also background of being a low quantity, anxious eater. (Has been selective eater her entire life—some textures, food appearance issues) She had severe gastroesophageal reflux as an infant requiring medical treatment (quit breathing at 3 weeks of age due to reflux), very delayed acceptance of solid foods, not until 16 months of age. She was the toddler who wanted her food cut a certain way or wouldn’t eat it, the child who wouldn’t eat red foods, for example.

Strategy now for getting in calories since transitioning to all oral intake last spring:
breakfast, lunch (very loosely supervised by school staff), afternoon snack at home, dinner, late evening smoothie (very high calorie homemade). 

All along we were open about weights and calories, especially when she was being managed by GI and nutrition specialists. Even when she was seen later by a FBT at a well respected children’s hospital, there was no attempt to hide her weight and calories were freely discussed. Even now, she denies any drive to be thin and doesn’t seem to be distressed by weight gain. Until recently under our supervision she had been choosing own breakfast, packing her lunch and choosing own after school
snack while I did the rest. When she became resistant to my suggestions to increase the quantity of her choices, and appeared to be eating less along with a few month plateau in weight gain, I took over all food prep and plating again. 

We we aren’t sure if this is a morph into restrictive AN, an uptick in her baseline anxiety (a very common element in ARFID) or just some stubborn adolescent behavior. When I took over, the tantrum outburst was pretty bad for a few days. Yesterday was so much better. It remains to be seen which way things will go.

My d has been resistant to treatment for anxiety. Pre ED dx she saw a therapist for over a year.She wouldn’t engage on a deeper level and successfully convinced that therapist she was fine. After that she saw another therapist and flatly refused to participate and then the FBT who thought we were doing fine also. She’s made it clear she doesn’t want to see another therapist. 




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Elibean1
Hi, I have a 12 year old with an ARFID diagnosis who sounds pretty similar!  I’m also constantly reinventing the wheel, but happy to say I’ve met a few other ARFID mums doing the same.

our girl was born with a floppy larynx and had various problems with reflux, sleep apnoea and weaning asa baby - surgery age two. After that, she ate better but has never really enjoyed food. 

On top of that, she has traits of ED personality type - quite anxious, competitive, perfectionist (in some areas). Age 10 she was scared by hearing girls being mean about each other’s thighs, and restricted - we thought anorexia and started supervising food within days of noticing - doctors diagnosed disordered eating, maybe beginnings of ED, so we did the 3 meals 3 snacks thing for a few months.

All good, fast forward to starting secondary school: anxiety made her feel sick, she went back to not eating at school. Within weeks we had a diagnosis of ARFID (no body issues - or not much) and weekly cbt. 

She has gained to above above her growth curve (which was probably low due to her throat issues) and has more energy. But her anxiety is going in other directions as she gains: body image stuff is now up, a bit OCD, clearly having to battle which takes so much energy. 

Her  treatment plan will be reviewed in 2 weeks so at least we’re not reinventing the wheel alone! Wisdom I’ve been given by lovely people here is that all EDs are individual, many of them morph as kids go through ages and stages, food is the primary (though not only) medicine and - were not alone. 

I belong to an ARFID FB support group and an AN one, and straddling both makes perfect sense of my kid who doesn’t quite fit either! 
Elibean
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mtkmbc4
Atdt31: your question about eating intuitively is one I have wondered about also. Even just a few days ago, when we were taking a less hands on approach to choosing d’s foods, she was enthusiastic about certain foods, finally genuinely seemed to enjoy eating some things but the quantity was clearly not enough. She would say proudly about how much she had eaten, thinking she had eaten quite a bit, was thoroughly convinced she was going to have gained at weigh in, and then act baffled and disappointed when she hadn’t gained.

She doesn’t avoid all high calorie foods. For example, she loves dark chocolate and nuts and will eat cookies. The issue seems to be that she prefers what she prefers, particularly if she picked it out and not her parents. 

Thank goodness for Benecalorie and other ways to boost calories!
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Elibean1
Yes, same here - she doesn’t have fear foods as such, loves milkshakes and sweets etc (allergic to nuts) but needs help eating enough in volume.

i wish we could get Benecalorie in the UK!
Elibean
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tina72
Elibean1 wrote:

i wish we could get Benecalorie in the UK!


Some got it at ebay and have it delievered from US here in Europe.
Keep feeding. There is light at the end of the tunnel.
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Elibean1
Thanks, will try! 
Elibean
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mtkmbc4
I buy Benecalorie from Amazon. Don’t know if that’s an option outside the US
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Salome

hi ladies n gents:

So our D 19 apparently did suffer possible ARFIDs through childhood and it morphed into RAN. She continues to have some "ARFID" issues such as fear of choking/vomiting and "odd" textures, fear of food mixing/touching issues etc.

Our son now 25, also apparent ARFID since early childhood. He is more difficult to refeed than D is, because his food choice limitations are greater and she has undergone therapy where he has not.

He is atypical for ED, so he probably falls under the "EDNOS"? He only lost weight after substance abuse nearly 5 years ago. He is 6'4" and weighs now 153 lbs. He is willing to try to gain the needed weight, but he has a great limitation of what he will eat. He doesn't have the "fears" common to ARFID, but has definite texture issues. No greens no fruits.....as a toddler and child, he had these issues as well.So I'm not certain where he falls, under what diagnosis, but he is difficult to Refeed and has obvious mental deficits related both to the low weight as well as comorbids.....make sense?

D on there other hand, is slowly working up in weight (fingers XxX), pushes through needed nutritional intake, has the common AN behaviors/issues as well as the ARFIDs...

It was suggested by a reputable Phd in ED, to D, that if or when she would be interested in tackling the ARFIDS the method used was very uncomfortable. A desensitization process that includes gagging and vomiting!!! Not certain that will be attempted anytime soon.....

I am interested in following an ARFID/AN thread.

I am, and will always be, "EDs Worst Nightmare" 

 

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Salome
I do have a box of unused Benecalorie that I am willing to give for the cost of shipping. IF interested let me know, I understand this may not be acceptable post for the forum, but if it helps let me know.

I am, and will always be, "EDs Worst Nightmare" 

 

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Elibean1
Oh yes, please, Salome! I’m not sure how we do that - is there a private messaging facility on here? I’m not comfortable giving email publicly but if it’s pisdible - and ok within forum rules - I’ll gladly pay outlay and shipping x
Elibean
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scaredmom
To email someone privately, click on their name and you will get the profile and you may email them directly..
Hope that helps.
XXX
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

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
You’ve come to my techno-dunce aid again! Thank you xx
Elibean
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scaredmom
Anytime.
😊

XXX
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

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
😳 umm....so I can get the profile, but can’t figure out how to email. Sorry! Any more tips? 
Elibean
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scaredmom
Yes under the name it says "email" click that and you will be able to email.

Here is my example if you wish to email me. Click on the email icon 
So you click on the email icon of the person you wish to email
Hope that works. Let me know Click image for larger version - Name: Screen Shot 2019-03-15 at 5.35.50 PM.png, Views: 6, Size: 34.67 KB
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

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
Thanks! No email under her name so maybe she has chosen not to give it. That’s fine, and I know for next time so thank you - so kind to take the time xxx
Elibean
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scaredmom
Yes there is the email  and you just have to click on the orange arrow icon next to email.
Please check again. It is there when I look at it. It will not have an address, just the icon
XXX
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

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
That’s v weird....none of the profiles have the orange email icon when I try them, even yours. It looks just like the screenshot but without the email! 

Ive checked my settings, but am not sure what else I can do. It’s probably something v simple I’m doing wrong, I’ll try again tomorrow but am baffled for now! Thanks tho x
Elibean
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scaredmom
Hmm will check on that. There was an issue with changes on the site  in the last day or so and I know there was some work being done.
thanks for letting us know.
XXX
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

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
Aha...maybe not me then 🙂

ill try again tomorrow x
Elibean
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atdt31_US
Elibean1 wrote:
Aha...maybe not me then 🙂

ill try again tomorrow x


For what it is worth, when I click on your name, I do get an email option...
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
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Elibean1
I still don’t! Very weird. Perhaps it’s bevause I’m on an iPhone?! I’ll try desktop in bit x
Elibean
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scaredmom
Elibean1 
i sent you an email and yes on the computer you will see the email icon bit not on the phone.
XXX
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

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
Aaaah! Mystery solved then. Thank you so much xx
Elibean
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