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cnkinnh

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Reply with quote  #1 
I've been promising to write up my thoughts on this literally for weeks, so I apologize it's taken me so long.

My 14yo daughter was hospitalized in July 2015 for malnutrition and dehydration. She went through extensive testing to find a physical cause for her weight loss, and when none was found, she was diagnosed with Anorexia, simply by process of elimination – despite the fact that she had none of the typical psychological characteristics of anorexia: no obsessive dieting, calorie counting, body dysmorphia, fear foods, or compulsive exercise.

A year and a half later, after much tearing of hair, after a great deal of weight gained that was resulting in no psychological improvement whatsoever – in fact, her mental state was declining – we bit the bullet and went to California for the UCSD 1-week family intensive treatment. Here, they updated her diagnosis from AN to ARFID.

Truth be told, I had suspected ARFID from the very beginning, ever since I had stumbled upon the description in one of my countless online searches. I had mentioned it once or twice to her FBT therapist, but hadn’t pressed the issue too much, because all the reading and research I had done had indicated that it really didn’t matter. A restrictive eating disorder is a restrictive eating disorder, and the treatment is that the patient needs to eat.

In many ways, this is true. Full, normalized nutrition needs to be the #1 priority for any restrictive eating disorder. However, at UCSD we learned that there are some important differences with how to accomplish this with ARFID vs AN. And subsequent reading on my part has helped me to understand some more basic differences between the two illnesses.

They are not the same, and I fear we’ve done some lasting damage to our daughter by treating her for the wrong illness.

Please note, I am *not* a clinician, or an expert of any sort. This information here is based on the guidance we received from UCSD, the reading I’ve done, and the observations and inferences I’ve made regarding my daughter’s particular circumstances. I am not claiming any of this as gospel, and I welcome questions and clarifications on any and all of this.

First, let’s start with the cause of illness. Anorexia and ARFID are both brain based disorders, but in different ways.

ANOREXIA:
-Triggered by negative energy (less calories eaten vs. expended) in a person with a genetic predisposition – a little bit of dieting causes a lot of disordered thoughts that spiral out of control.
-Most often, presents during adolescence.
-One theory suggests it is an adaptation that enabled primitive humans to survive famine.

ARFID:
-Believed to be a sensory issue at its core. This can take many forms, such as fear of choking, issues with textures of some foods, or sensory distress with the act of chewing, swallowing, and feeling a full stomach.
-Presents sometimes right from birth; other times, is triggered by trauma such as a choking episode on a piece of food or even an illness or injury that might seem unrelated to eating.
-Usually (but not always) associated with picky eating. This is still an emerging area of research but it is believed that picky eaters’ brains experience taste & eating, particularly of new foods, intrinsically differently from the rest of the population. This sometimes resolves itself in adulthood, sometimes not. Some believe that pressure from parents, and parental attitudes toward the pickiness may influence this bt increasing anxiety. Regardless, it is important to understand that the pickiness is an inherent difference in the way the brain perceives food; it is not an effect of malnutrition (thus it will not resolve with more nutrition), nor is it a failure of parenting.

Anxiety is common in both disorders.

PRESENTATION

ANOREXIA

-Characterized by obsessive dieting or negative ‘moral’ views of particular groups of foods.
-Often includes an exercise compulsion.
-Usually includes body dysmorphia – i.e. the inability to recognize oneself as being underweight.
-Usually includes a pattern of disordered thinking that can be separated from the patient’s true self.
-Characterized by anosognosia – the inability to recognize one’s own illness.
-Most typically affects adolescent/teenaged girls.
-Psychological barriers to eating, centered around the moral or emotional consequences of eating.

ARFID

-More centered around the physical act of eating, which is inherently unpleasant.
-The patient wants to eat; they can see that they need to eat, but they are unable to. (This can sometimes be difficult to discern, especially in a child who finds eating unpleasant, and/or a stubborn adolescent who doesn’t want to be told what to do.)
-No exercise compulsion, body dysmorphia or obsessive thoughts around food or dieting. The patient may not even be consciously aware of his/her restriction of food. (My daughter was not.)
-Food restriction is based on sensory issues, not ‘moral’ judgments, so food choices will likely be very different than an AN sufferer. Foods are selected based on sensory characteristics rather than calorie or fat content. (At UCSD, one of the other moms was amazed that my daughter would eat cookies and drink soda. Even at her worst, when she bottomed out at 72lbs, she was still eating ice cream and cake – just very, very small servings of it.)
-More spread across demographics – young children, adults, males and females, though the focus often tends to be on younger children. (My daughter calls it the “cute and cuddly eating disorder” because of this.)
-Can take many different forms:
1. Selective eating – the patient can only tolerate a few foods, usually white and bland.
OR
2. Phobia from a traumatic event – the patient may have choked on a food and now is afraid to eat again for fear of a recurrence.
OR
3. Sensory distress at the act of tasting, biting, chewing, and feeling full. (This is my daughter.)
OR
4. Unexplained disinterest in eating.
One ARFID mom I chatted with said that no two people’s presentations are ever quite alike.

TREATMENT

Priority #1 in either case is to address any health concerns around malnutrition. But the way this is accomplished can have some very important differences:

ANOREXIA – FBT / MAGIC PLATE

Put parents in charge of all food and portion choices. As weight is restored, the disordered thoughts often, though not always, decrease and the patient can gradually resume responsibility for eating.
-The patient has no choice in food selection and may not negotiate.
-Fear foods must be challenged directly.
-The patient is often relieved at no longer being in control. (Though they may not express this until later.)

ARFID

-Requires a gentler approach that involves working *with* the patient. Incentives and consequences are less likely to be effective because eating is physically difficult or even impossible.
-Parents are still put in charge, but food choices should not be handled with high pressure tactics as with FBT/Magic Plate. It is important to determine whether the patient has enough of a repertoire of foods s/he can eat in order to get adequate nutrition and function in society. If the repertoire needs to be expanded, this may require professional intervention, and the patient needs to be willing and cooperative. Parents/professionals should never place outright demands on the patient to taste or complete a serving of any particular food that the patient is not comfortable eating, as this is likely to A) not work, and B) create additional aversions and anxiety in the patient.
-Adequate nutrition is always required, but choices should be offered in order to accomplish it.
-Portion size may be included in the choices as they are presented to the patient. It is acceptable to allow the patient to choose smaller volume, more calorie-dense foods. Eating large volumes of foods can be extremely difficult. This is something that may not resolve with weight restoration. (Honestly, I’m not happy with how much my D eats sweets and baked goods, but UCSD encouraged us to roll with it, as long as she’s getting adequate nutrition and a reasonable variety of foods over the course of the day.)
-Similarly, eating quickly can also be difficult, and mandating time limits/enforcing consequences are likely to backfire. Instead, the patient establishes a baseline of how fast s/he can eat, and collaboratively, is encouraged to gradually improve upon it. This may also include direct work with a professional on taking larger bites, chewing less, and other ways to minimize sensory distress.
-Brain ‘healing’ is not expected in the same way that it is with AN, since there is no pattern of disordered thoughts as with AN. “Food is medicine” is the common mantra for AN sufferers, and in terms of physical health, it is still true for ARFID; however food alone is probably not going to heal the ARFID brain based issues with eating.

In general, ARFID is a new diagnosis with very little research done on demographics, treatments and outcomes. With AN, there are enough success stories out there to get a picture of what recovery should look like. The same cannot be said for ARFID. Also, because it takes several different forms, there may be different expectations for outcomes depending on the presentation.

I’ve found that many people equate a diagnosis of ARFID with selective eating, where the patient can only eat a small handful of foods and they are physically unable to taste new ones. This, however, is not always the case: my daughter, as noted above, does have a reasonable repertoire that she will eat, and she is able to taste new foods, although she almost never likes them. Her issue is, quite simply, with eating enough volume to maintain her health and weight.

Mistakes made:
As mentioned above, one of the main differences between AN and ARFID is that the patient is not in denial. S/he knows s/he needs to eat, but cannot. Looking back, I can see that this was true for my D, but everyone around her failed to recognize it, because it was (and still is) so difficult for her to eat – and the fact that she’s an obstinate teenager doesn’t help.

My daughter does not have much of an anxiety component with her ARFID. She is definitely a picky eater, but not to the point where she is flatly unable to taste new foods. (Though she does have some foods she’s eaten previously that she just. can’t. eat. now.) So I spent a lot of time mistaking her ARFID/picky eater dislikes for AN ‘fear foods’, and pushing them on her, too hard. The good news is that she has gained 50lbs since she bottomed out, but it has been at the cost of a lot of trust between us – with no real improvement in her selection of foods. When she was first ill, we had several late-night crying sessions where she literally cried on my shoulder about her illness. While I’m certainly happy that she’s no longer this distraught over things, the thought of her coming to me for comfort when she’s that upset, nowadays, is unthinkable. She doesn’t trust me, doesn’t open up to me anymore, and she flinches if I even try to touch her. With our new approach since UCSD we are making much more of an effort to listen to her point of view, so I hope we can rebuild the trust. But it’s going to be difficult.


__________________
14yo D, hospitalized July 2015 after losing 20lbs, followed by a horrible week in an ED clinic. No obsessive dieting or body image issues, yet misdiagnosed with RAN until UCSD weeklong treatment program Jan 2017 updated diagnosis to ARFID. Many mistakes made along the way due to not understanding the difference between the two illnesses.
mjkz

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Reply with quote  #2 
I'm so glad you had a chance to type this up!!!  It will help a lot of families.  I'm so glad UCSD was able to teach you how to deal with what works for your daughter and her particular eating issue.  I think this should go in the hall of fame posts.
Honey_Badger

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Reply with quote  #3 
Excellent summary, cnkinnh.

Foodsupport_AUS

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Reply with quote  #4 
Quote:
It is important to determine whether the patient has enough of a repertoire of foods s/he can eat in order to get adequate nutrition and function in society. If the repertoire needs to be expanded, this may require professional intervention, and the patient needs to be willing and cooperative. Parents/professionals should never place outright demands on the patient to taste or complete a serving of any particular food that the patient is not comfortable eating, as this is likely to A) not work, and B) create additional aversions and anxiety in the patient.


I find this really interesting. For those of us who really struggled with FBT but have a kid with typical AN, ironically doing some of this seemed to work better for us. ED did need to be backed into the corner of food not being optional, but for us the anxiety of having all choice taken away worsened rather than improved things too. My D found the fear paralysing.  She required order and predictability for quite some time before we could in any way start offering food challenges. 

__________________
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.
aboncosk

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Reply with quote  #5 
Cnkinnh - that was so extremely thorough!  Thank you for that explanation!  You have been such a source of support for me since leaving UCSD.   Eating disorders wreak so much havoc on our families [frown]  But, given time - things will improve and your relationship will get better <3 


PuddleduckNZ

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Reply with quote  #6 
Great write up.

Its just so so so tricky,  ARFID is so different for each sufferer.

Much like AN is however too, some have more/less Body Dysmorphia, more/less Exercise Compulsion, more/less fear of Fat/Calories, more/less Anxiety, more/less Depression, etc.

Each individual has there own set of similar but different problems.

For us we towed a fine line between AN/ARFID. Very fine. There were symptoms my Son displayed that had us and all the professionals guessing right the way through his illness. 

I have always felt very on my own island in the ED world, because we fit in neither camp so to speak. I have been told I am 'cruel' for forcing him to eat via FBT from an online ARFID community! Well he is in recovery now and eats all foods, ALL foods. This is my kid who at one stage was eating 5 foods only and had 2 hospital admissions due to malnutrition and dehydration.

Though he was never a picky eater prior to becoming ill at around 8/9yrs. There were events for him that in hindsight were catalysts or triggers for the ED but all in all it was kinda slow and insidious, then a very sudden descent and the events didn't seem significant enough to cause an ED. Moving house, concerns about healthy eating via school, vomiting bug, choking incident, phobias appearing.

We did see a weight gain/brain healing sort of episode at one point. Where all his absolute concrete rigidity loosened and anxiety dropped significantly. Initially I did not beleive he had Anxiety but as the months rolled on it became completely debilitating, so much so that he went nowhere and couldn't go out in public, missed 15mths of school and would not go anywhere there were people, food or even food 'smells'. Scary scary illness.

I agree to a degree about the sensory aspect, as S lost more weight early on, he became terrified of sounds and cars and all sorts of things, like his tag on a t shirt scratching him, he couldnt wash as he said the water hurt his skin. Though he didn't seem to have these before the illness.

There is a subset of cross over in these diagnosis and there is a higher than normal risk of an ARFID child going on to develop AN, I believe, as did our Psychiatrist and FBT Therapist.

FBT was still EXTREMELY important to my Sons full recovery. And Medication (Olanzapine). Nothing else worked well, (EXRP, CBT etc) He just couldn't eat enough of anything to gain and heal otherwise.

For us we gave him choices too, but not too many, or he would become indecisive. FBT needs to be modified for these kids in my opinion. It takes a team with an open mind and time to work it all out for each individual. We felt like guinea pigs many times. But we got there.

The behaviours do lurk for sometime, but each day, week, month, year, it gets better.

I'm just putting this here because one day there will be someone else with a kid like mine and I would like them to see that their kid can heal too and go o to live and eat normally after ARFID Xx

__________________
Son 9yrs when he became unwell 2013, ED slide from April 2014, dx at 10yrs July 2014, 2 hospitalisations - dx so many times Behavioural Anorexia, EDNOS, ARFID. FBT from August 2014. Anxiety, Emetophobia. 12.5yrs old now! In recovery, gets better every day with constant vigilance, life returns.
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