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really

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it looks like my 13 yr old will be diagnosed with ARFID. He has been at the bottom of the curve for a long time, weight very low for years and has finally just flatlined.  He's well below the chart in weight and BMI. We’ve been through everywhere and they can’t find any other explanation. It’s really hard for us to get our heads around this because he doesn’t seem to have restrictive eating habits or phobias. It’s definitely not a body image issue and he is not opposed to gaining weight.  He will try anything and enjoys new things. Apparently nonetheless he does not take in enough calories.  He’s either not hungry, full quickly, not that interested, or has stomach pain and/or nausea.  
 
I'm really irked by a lot of what I’m reading about ARFID.  Things like "ARFID can also be used as a diagnosis in individuals who have a lack of interest in eating or who have low appetite.” And "patients may experience abdominal pain and other aversive consequences when they eat" that further exacerbate food avoidance.   Well if you had stomach pain, would you have a good appetite? I realize that at this point we just have to do something, but this feels like an overly broad diagnostic bucket. 
 
He's on the cusp of getting a feeding tube. Idk what else we are supposed to do here. We already prepare meals, eat at the table together (breakfast and dinner), I pack school lunches, we try to calorie load, etc etc. He’ll try stuff. He just can’t eat more than he does and it’s counterproductive to pressure him. thanks for any thoughts.
atdt31_US

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really -- Sorry for your situation.  Same boat, here.  We have an ED Eval this Friday and I will be surprised if they do not diagnose ARFID.  But that just gives a label --- it seems that treating this type of ARFID is still a bit of an unknown.  I generally agree that pressure to eat is counterproductive and an extreme negative in the house.  Not sure what I will do if in fact ARFID is diagnosed and if Magic Plate/LSUYE is suggested as the best treatment.  Good luck to your son.  Not too sure on your details, but for us we can feel like we are in imminent need of intense intervention (tube) and the next week feel like she is fine and just naturally slight but otherwise normal.  

Who will be diagnosing ARFID -- pediatrician; GI; Eating Disorder specialist; etc?  Have they suggested a treatment plan other than to "encourage calories?"

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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.
atdt31_US

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So, my last reply was not real helpful.  Sounds like your son will eat and is okay with the idea of weighing more.  In that case, this site has some wonderful recipes for enhancing the fat and calories in a small footprint of food the kid will eat.  One of the best tips I got on here is that adding 1 TBL of Canola Oil (rapeseed oil) is about twice the calories of butter -- I can't recall right now but I think 1 TBL canola is about 120 calories.  Surprisingly, it can be whisked into many things and be undetectable -- spaghetti sauce; sauce from portion of Mac n cheese; yogurt; pudding; applesauce; gravy; absorbs into rice; blended in a shake or smoothie.  Really packs a punch of much needed fats and does not ruin the portion.  As you know, an extra 500 calories per day will equate to a one pound gain per week.  So .... if your son will eat things like listed, and if you can sneak in that canola, .5 to 1 pound per week might be obtainable.  It worked for us for time, but my kid generally eats foods that are less amenable to the addition so we have not managed a sustained weight gain - but each family and kid is different, so perhaps this sort of addition will work for you better than it did for us.  

You can search the site for the high calorie snacks thread to find other recipes as well.

Are you in the US?  What area?  Other than weight, what makes him on the cusp of needing a tube -- does he have other symptoms like low heart rate, etc?

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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.
really

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I'm waiting on referrals but am told we need to see the feeding clinic. So they are ED people even though nobody has directly said ED to us yet. 

It's true that the difference between 'OMG you need a feeding tube ASAP!' and 'it's ok for now' is only a few pounds, and that can fluctuate for no clear reason that we can see.  we're at the point where "it's ok for now" is not really ok either though bc we need some linear growth before it's too late age-wise. No height in a year and minimal before that, recent weight loss - not a lot, but it doesn't take much when you're already on the edge. So far other measures are normal but he is tired and irritable. Something has to happen.  Up until now the recommendation has been add shakes, throw in some pediasure, etc.   Add oil and butter, etc etc.  AS for the drink supplements, he goes in and out of willingness to have them and over time it clearly hasn't made a big difference. Ditto for the added fats.  I can't even imagine what else meal wise will be recommended. it feels like we already do most of the things. I plan, I cook, we all sit there. He eats, and if he has made a reasonable effort and says he's full, we move on (bc as I said, getting adversarial about it is unproductive). I'm sure they think when he's evaluated they will find some restrictive behavior that we just aren't noticing or something. It's very frustrating. 


atdt31_US

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Quote:
Originally Posted by really


It's true that the difference between 'OMG you need a feeding tube ASAP!' and 'it's ok for now' is only a few pounds,

               Exactly our experience -- and even moving up a few ounces sometimes turned the tides and quelled the docs.


No height in a year and minimal before that, recent weight loss - not a lot, but it doesn't take much when you're already on the edge.


               Height dropping off his own curve is concerning especially this close to puberty -- we have not had that yet, but if she does not have a spurt soon we will be there too.  Has he hit puberty yet?


I can't even imagine what else meal wise will be recommended. it feels like we already do most of the things. I plan, I cook, we all sit there. He eats, and if he has made a reasonable effort and says he's full, we move on (bc as I said, getting adversarial about it is unproductive). I'm sure they think when he's evaluated they will find some restrictive behavior that we just aren't noticing or something. It's very frustrating. 

                 Yes, it is very frustrating and exhausting.  We have always eaten at the table, on a schedule, well-planned meals for the most part, well-balanced for the most part, etc. I have read and read and read about this, and in the past months, really focused on ARFID and its various forms.  Sounds like our kids may be of the same ilk (not sensory; not selective; just an inability to sustain the volumes needed to move their curve upward).  From what I can read, no one really knows how to address it -- our child psych wants us to go to a nutritionist who will sit down with my d and make a meal plan that I will then implement.  I am on the fence about trying this -- it is very different than what this site normally advises, but my kid is not currently believed to be RAN so perhaps Magic Plate is not going to be our best option (we have an eval this week so perhaps I will be surprised by a RAN or non-ed diagnosis rather than ARFID).  It will be interesting to see what your professionals suggest.  

                    I have found some pretty good ARFID books and articles but unfortunately the ARFID publications are all so new I keep having to buy them rather than finding them free to read online.  Let me know if you want some links to the ones I have found most helpful (but really just confirmed that it is new and they are still gathering info on what treatments work best).

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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.
martican

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Reply with quote  #6 
Were physical illnesses eliminated? Like celiac, IBS, etc? 
really

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Yeah, nobody can find evidence of organic cause. I will always continue to wonder, but we've been pretty thorough. I am certain it isn't celiac, we've looked for that enough times. Also IBD, CF, DGE, etc.

The conclusion is he must not be taking in enough calories to meet needs.  (I have wondered if needs are unusually high. There is no evidence of inflammatory conditions but maybe he just runs that way.)

We are actually thinking the tube is not a bad idea. I may be completely wrong, but since he doesn't have aversions or intentional restriction, I feel like we will create problems with food by making an issue of what and how much he is eating. In fact, I'm certain we would. He likes food and likes eating. He is willing to eat, try things, and seems to enjoy it. He just somehow isn't getting enough. I  think LSUYE kind of approach could create other problems that we don't currently have. Am I thinking about this wrong?





Foodsupport_AUS

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Reply with quote  #8 
Welcome to the forum. So sorry that you have had to find your way here.

Quote:
He eats, and if he has made a reasonable effort and says he's full, we move on


This is so normal for anyone who has a restrictive eating disorder. The less you eat, the slower you eat the faster you tend to become full. When parents are managing AN with FBT we have to push through this, no matter how unhappy or aversive the experience is. I can guarantee that it is incredibly difficult to see your child in such distress. With AN they will do anything to avoid eating it - cry, scream, throw things, bang their head, injure themselves in other ways - and yet it is pushed through at that is how FBT tends to work. 

If the organic things have been eliminated it may be that this is how you have to do it. The difference will be that there are going to be some foods that are calorie dense that are easier than others for them - in AN these are often fear foods so are very difficult to get in, even salad can be hard in AN.

We have had a few parents on here who have done very well with their child with ARFID. Honeybadger and Puddleduck both had sons with ARFID, they are now doing really well. 

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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
Honey_Badger

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Reply with quote  #9 
hi, Really-

Have you calorie counted?   How many calories daily do you think your son is eating?  

I hesitate to give any advice because I only know what worked for my kid who had one particular type of ARFID (Severe Selective Eater) and there isn't much research base I can turn to to back up what I say.  But I can give you our experience:

- LSUYE would have backfired tremendously.   But it was OK to make eating a priority... as in, you need to eat >1000 calories before you can go out to do something energetic (not that he had energy for much at the time) 

- What worked was more "I'll get you anything you want to eat".   I cut back on a lot of activities to be sure he had time to eat.  I always made sure he had his favorite foods, no matter how tired I was or how broke we were.  If it was 7 PM and he said "I'd really like a sandwich from Chick Fil A", I got in the car and drove to the Chick Fil A drive through and got him what he asked for.  I immediately satisfied any craving he expressed, basically.  At first he didn't express a lot of food desires, but over time, when he saw that I would get him whatever he asked for, he started expressing more and more.

- calorie counting DID work for him once he started eating a little more again.

- he truly just wasn't hungry.  I think after years and years of not eating his stomach just adapted.  Instead of feeling hungry, he just felt cranky I think.   

- digestion:  I needed to increase his food gradually -- slowly and steadily though, adding 100 extra calories each week, at first through oils.  I learned a few ways of increasing appetite.  One was to be sure all 5 flavors were present in each meal (if at all possible).   Something bitter was always the hardest flavor to find.  For bitter, he liked olives, pickles, lemons limes and chocolate.  I was able to give him a spoonful of digestive bitters as well.

- appetite -- Peppermint or spearmint seemed to improve appetite, as did the antihistamine Periactin (which was mint flavored).  It increased stomach motility and gave him more room for more food after about an hour of taking it.  

- Ensure-type supplements are convenient -- but my son would never eat them though and I don't think they have a lot of calories in them anyhow.  You can make higher calorie drinks yourself.  

- Eat at a very predictable time to get the stomach ready to digest food at the same time each day.  He wasn't able to regulate his appetite so it helped to have a pretty strict routine.  Wake up and take periactin, then shower and get dressed.  He still wasn't hungry for breakfast but I would send him to my neighbors house and she fed him hot cocoa and cereal.  I also ended up making him a hot cocoa for a while with an egg inside it.

- Mineral supplements -- my son was a vegetarian since age 8, and I think that was where it all started to go bad.  I truly believe he had a zinc deficiency which impacted his sense of taste and smell.  I started giving him zinc supplements and always thought he ate better once he'd been taking zinc supplements for a week or two.  Totally anecdotal.  He eats plenty of meat now and doesn't need any supplements.


really

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Reply with quote  #10 
I've calculated he eats about 1500-1800 calories a day. On the worst day where he was sick, he was at 1200. On a great day, close to 2000. But 15-18 is more typical.  He is tiny so this is as far as I can tell not a huge deficit, actually. But apparently it's nowhere near enough bc he hasn't grown in forever. I already feed him anything he's interested in. The whole thing is mind boggling because he does eat. I do think that he is less hungry than he could be and sometimes full quickly. He isn't the world's biggest eater. So I get it, we need more, a lot more. 
debra18

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Reply with quote  #11 
Did you try high calorie drinks with meals? Hot chocolate with milk and honey served 3 times a day can add 1200 calories a day
tina72

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Reply with quote  #12 
Try to get a big blood screen with minerals like magnesium, zink, kalium and for example vitamin b1, b6 and b12.
Less zinc and vitamin b12 in blood causes low appetite and depression.
Do you know Benecalorie? That are little pots of 44 ml with about 330 calories without flavor and you can add it easily to pasta sauce or other sauces, white soups, rice...
Tina72

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toothfairy

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Hi Really,

Here is just my opinion based on having a son in recovery from anorexia ( yes It is completely different, but the kids still need the nutrition and re-feeding regardless). Another point to note is that one eating disorder can change and morph into another.

I suppose that the bottom line is that first of all  he needs to be medically stabilized, and then  re-fed back to his original growth curve, regardless of diagnosis.

He is going to need an enormous amount of calories, both for re-feeding and then possibly hypermetabolism , puberty , and teenage growing from a boy to a man.  I believe if growth is stunted it is very, very, difficult to catch up so the sooner he is re-fed the better on all fronts.

I re-fed a 13 year old boy that was down to a bmi of 16.8. He was restricting for a total of 9 months. We tried to get him treatment from 4 months but nobody would believe us that we had a huge problem. He has since needed to get to BMI 24 to be fully re-fed, he has been weight restored and still gaining for some time now, but we are into year 3 of every single day needing more than 4000 calories per day in recovery. Many kids need that and much more.

The consequences of malnutrition are very serious and can be very dangerous. The first thing that I would want is  a full medical evaluation, getting all the tests done in this booklet.
Then he will also need to be heavily medically monitored during his recovery.

https://higherlogicdownload.s3.amazonaws.com/AEDWEB/05656ea0-59c9-4dd4-b832-07a3fea58f4c/UploadedImages/Learn/AED-Medical-Care-Guidelines_English_02_28_17_NEW.pdf

There are also some good threads on ARFID on this forum if you do a search.

Here  is a good presentation on ARFID from the at home with eating disorders conference.



So regarding re-feeding, I would add enormous amounts of HWC, Butter, ground almonds etc. Many here have given a fully loaded smoothie, with a small enough footprint with Heavy cream, Ben and Gerry's, ground nuts,heavy yogurt  etc 2000-3000 cals upon the kid rising.

In your shoes right now I would make contact with Dr. Nancy Zucker at Duke, whom  is an ARFID  expert who is pretty good about answering parent emails and might have some guidance for you.
I have just found this email address   nancy.zucker@duke.edu
 

Best wishes




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Food is the medicine. Recovery is possible.
Mamaroo

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Reply with quote  #14 
Hi Really, sorry to hear about your son, but am glad you found us.

Maybe I missed it, but I couldn't find how many meals or snacks you give him everyday. My d was given a mealplan at the hospital and it had 3 meals and 3 snacks, roughly 3 hours apart. If you already give him 6 meals/snacks a day you could add another either an hour before he wakes, typically a smoothie or milkshake. Then he can go back to sleep, or just before bedtime.

When I started reading about Arfid, I recognised myself. As a child, I ate very restrictively, although enough, but x-rays showed low and decreasing bone density when I was about 16y. My mother then modified my diet to be more balanced. Like your son, I didn't have body issues and wanted to eat more/better. What helped was getting involved with preparing the meals, seeing what went into it and helping with cooking. I also took calcium supplements. Arfid is definitely treated differently to AN.

Sending you lots of hugs from Oz 🤗🤗🤗🤗🤗

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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
really

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Thanks everyone. I watched the video above and have read pretty much everything I can find. It seems there really is a paucity of research and standard of care on the reduced appetite subtype of arfid.  We don't have texture avoidance, selective choices, etc. He just does not consume enough. It seems very hard to figure what to specifically target. I'm still thinking the tube is not the worst answer. We try to force feed and we will create new issues. I don't know. 
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Reply with quote  #16 
Hi really,

I came accross this research article about ARFID that talks about the current state of treatment in patients with an inability to consume enough due to disinterest in food or very low appetite as well as sensitivities and fears. It is recent (2017) and quite readable. Thought it might be of us to you. 

I am guessing you are already making every mouthful as nutritionally dense as possible. I had to do this in the beginning with my ED son and could get 1,000 calories into 300ml of soup!

The Kartini Clinic treats many kids with inability to consume enough calories for many reasons, not just ED. I learned a huge amount on their blog.

Wishing you continues strenght and courage on your search for solutions.

Warm wishes,

D

Edit: sorry, just thinking again about your last post. I wouldn't see it as force feeding or punishment; you are supporting him to consume enough calories to grow and live a great life. If, for example, he eats 3 bites of lunch then it is a medical necessity that he does only quiet activities for the afternoon. It is really unfortunate if he wants to play football with his mates but kids with many disorders can't have a normal life. It truely sucks but is just a fact of life. A friend of ours has a blood clotting disorder and can't roughhouse it in the schoolyard. It sucks but his parents are only doing what is best for him when they forbid it. I found it helpful to reframe the restrictions I put on my son as medical necessities in the same way as if it was cancer treatment. Struggling to find the right words but hope I managed to convey my thinking!

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2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Foodsupport_AUS

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Reply with quote  #17 
I agree with deenl. It is very important to reframe what increasing food intake is. It is not "force feeding". It is however looking at food as medicine. A medicine that must be taken regularly every day with a view to improving health. Working out the least distressing way of getting all of the dose in all of the time is the goal of most parents of kids with eating disorders. If your son has no body image issues and no sensitivity issues or fears of vomiting etc.. then theoretically you are ahead of most of us who are dealing with kids who are terrified of eating.  As deenl has said Kartini clinic deals with many kids with ARFID, as I believe does CHOP and also Duke. This article from CHOP https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5331684/#MOESM1 published last year, looks at re-feeding all kids with the same protocol, regardless of diagnosis. 
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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
Honey_Badger

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Reply with quote  #18 

Quote:
Originally Posted by really
Thanks everyone. I watched the video above and have read pretty much everything I can find. It seems there really is a paucity of research and standard of care on the reduced appetite subtype of arfid.  We don't have texture avoidance, selective choices, etc. He just does not consume enough. It seems very hard to figure what to specifically target. I'm still thinking the tube is not the worst answer. We try to force feed and we will create new issues. I don't know. 


Have you explored the idea off the antihistamine, pericatin?   It increased stomach motility and can be used as an appetite stimulant.  My son used it with good results.

http://uncfeedingteam.web.unc.edu/2017/02/21/appetite-stimulation/

I would focus on 1) increasing calories with a small "footprint" and 2) increasing stomach capacity - Help your child notice when he starts to get that "full" feeling, and then encourage him to try to eat a little bit more.  Keep records, how much more he is able to eat after he hits the "full" feeling, and try to increase it 1 T more, 1/4 cup more etc... make a graph and keep track.   I wouldn't punish for failure to eat a certain amount, but reward for meeting these very hard goals -- find a reward your child really really wants.

I agree, there is definitely a lack of research in this area of ARFID, where there are no fear foods to conquer, no new foods to learn to eat.    

Mamaroo

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Reply with quote  #19 
Hi, I saw this article yesterday (https://hdfs.illinois.edu/news/got-picky-eater-how-%E2%80%98nature-and-nurture%E2%80%99-may-be-influencing-eating-behavior-young-children), stating that genes were found, which could explain why some children didn't like specific foods.

Here is a quote from the article:

"Interestingly, both the TAS2R38 and CA6 genes are possibly related to bitter taste perception. So it is not surprising that the children who are genetically “bitter-sensitive” may be more likely to be picky eaters (i.e. turning down Brussel sprouts or broccoli). Other chemosensory factors, such as odor, color, and texture, may affect eating behaviors as well. Further studies are needed to see how children’s food preferences are affected by the look or smell of their food."

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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
toothfairy

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Reply with quote  #20 
https://childadolescentpsych.cumc.columbia.edu/articles/arfid-what-you-need-know-about-eating-disorder
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