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LauraCollins_US

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Reply with quote  #1 
Parents, I am here to ask for your input on a session that I am co-moderating at the AED International Conference on Eating Disorders next month. The session is part of the Difficult Dialogues series; these are sessions that raise controversial or difficult issues in the field. I am honored to be co-moderating this with leaders in the field. The description and a link are below.

The reason I am reaching out to all of you is for your ideas on statements or beliefs about eating disorders. Our goal in the session will be to find consensus among all the participants (please come!) on at least three statements. You see, I have found that the ED world is so diverse and so divided that we lack common ground of basic beliefs about eating disorders.

So the session will start with giving small groups a list of statements about eating disorders and trying to find points of agreement.

As the sole representative of the parent community on the panel, I want to make sure to include statements that THIS community believes, or has heard, on the initial list.

Examples:

Disordered eating and eating disorders are matters of degree, not different in nature.
Early detection and intervention are important.
Eating disorders affect people of all genders, ages, races, ethnicities, body shapes and weights, sexual orientations, and socioeconomic statuses.

PLEASE SEND YOUR SUGGESTIONS ON STATEMENTS FOR THE EVENT PARTICIPANTS TO CONSIDER!!!
Laura@FEAST-ED.org

Eating disorders are addictions difficult dialogues description.png 


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Laura (Collins) Lyster-Mensh
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Foodsupport_AUS

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Reply with quote  #2 
Where do I start?
Eating disorders are not a choice.
Though the exact cause of eating disorders is unknown, it is generally believed that a combination of biological, psychological, and/or environmental abnormalities contribute to the development of these illnesses. That is eating disorders are "not caused by parents".
Just as eating disorders are not a choice, you do not have to choose to get better.
Part of recovery from all eating disorders includes full nutrition every day.
Education and support for family, caregivers, or significant others is essential to assist in recovery from eating disorders. 
Eating disorders are not addictions.
Part of recovery from an eating disorder involves achieving a healthy weight. 




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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.
melstevUK

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Reply with quote  #3 
'With anorexia nervosa - VERY early intervention is important. i.e. before BMI has dropped below around 16, or even higher if possible'

Early intervention at present often means - getting a patient referred, but very little intensive action taken STRAIGHT AWAY.   Weeks can go by with a 'wait and see how the family manages at home'.   URGENT stressing of importance of reversing weight gain and intensive support in turning the situation round immediately are still not the norm.  Clinicians don't panic, try and keep atmosphere of calm and try and be 'nice' to the patient.  This needs to change - hard messages need to be given straight away to patients.  'You need to start eating and putting weight on NOW if you do not want to spend many years of your life to come being scared of eating and weight gain.'

'Hospitalisation should happen sooner rather than later when patients are not making any progress at home'.  Intensive support is better sooner rather than later.

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LauraCollins_US

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Reply with quote  #4 
Keep 'em coming, my friends! Great stuff, all!!
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tina72

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Reply with quote  #5 
1) Early intervention - too many IPs ask the patient to be very underweight to be accepted, that is ridiculous. You would not ask a cancer patient to come again when the cancer is double size.
2) No blaming of parents. Parents help is the key to recovery. Even if the kids are young adults. No cut at 18. ED patients are often younger than on paper.
3) Better help with refeeding. No re-inventing the wheel. Food plans and concrete advice what and how much to add.
4) Education in schools, even in kindergarten is needed. No blaming of fat and sugar. Help for children withs EDs in school.
5) Better discussion about healthy weight. Weight ranges are often too low. Target weights do not include growth. It should be normal to look on historical growth charts.

These are my quick ideas. Maybe I can add more tomorrow.
Thank you so much for fighting for us.

Tina72

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toothfairy

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Reply with quote  #6 
Thank you Laura
1/You can have an eating disorder including anorexia at any weight.
2/Sufferers need to be brought back to their original growth curve plus more to get into recovery, a generic WHO bmi "healthy range" is not a suitable tool to use in eating disorder treatment.
3/Food is the medicine.
4/Full recovery is possible.


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Food is the medicine. Recovery is possible.
atdt31_US

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Reply with quote  #7 
I would like to know if there is consensus that the risk to elementary and middle school kids is greater than the benefit when it comes to "healthy eating" "good foods vs bad foods" "calorie counting" and other similar curriculum items.  I would think the consensus would show very few cases of obesity are prevented by such school lessons and that there are demonstrable risks to starting genetically vulnerable youth down a very long path of disordered eating or full eating disorder.  Further, I would hope there would be consensus that if such lessons are to continue in schools, parental notifications should be sent no differently than when they get told "Code Red" drills will be practiced, or sex ed units are on the calendar.  Finally, it would seem there could be consensus that any teacher (PE; Healthy Living; Home Ec; Science -- all of those classes have hit on it for my kids who are in sixth grade) -- that any such teacher MUST have training on EDs and shown examples of when kids have responded to such lessons by restricting or dieting or turning vegetarian or starting an exercise regimen, etc, that triggered an ED --- teachers have no clue and thus don't attempt to filter any of the lessons through that lens.  

If there were true consensus on these by the various experts that otherwise still clash on some other details of EDs, it would seem that the position could be taken to school boards to see easy alterations to the currently very under-informed teachers presenting this sort of info to our kids.  


Along a different line, living in the US and reading around this site, I am always amazed that other countries do not have historic weights/heights despite, it seems, having had their kids at doctor appointments.  It would seem there could be consensus that medical providers take at least annual height/weight measurements of their patients.  

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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.
AUSSIEedfamily

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Reply with quote  #8 
I think I can hear our darling Charlotte Bevan (dec) calling from heaven to say "Get Rid Of BMI" its useful only for calculating insurance premiums and nothing else. Science has prooven its flawed. It was NEVER EVER designed as an individual person measurement. Its use as a means of determining how ill or well a person is is just crazy. In many cases it stops early intervention and then it stops treatment/therapy too early. Get Rid OF IT its a useless flawed formula!! Its a nuts calculation even when its modified with growth curves and other indicators its still a flawed no science behind its formula!! For those that defend the BMI and defend its use, please provide the science, evidence and data that demonstates squaring of a persons height is a valid muliplier??
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scaredmom

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Reply with quote  #9 
 Eds  such as AN and BN can kill someone in a short time, days or weeks but obesity takes years for medical issues to occur. So in the big scheme of things, early acute death should take precedence. 
"every body is beautiful"


kazi67

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Reply with quote  #10 
Hi Laura
Have emailed you
AGEEE totally with all of the above!!
Good luck at the conference :)
deetz

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Reply with quote  #11 
I would agree with all of this, especially atdt_31 regarding getting consensus on how "healthy eating" programs and talks affect our kids in a negative manner. In our school, we were given calorie and sugar guidelines for afternoon snacks that we'd send in for children (this was just for the child, they weren't bringing it for the whole class). I'm really feeling called to make an issue of this with our schools, especially since my daughter started obsessing about healthy food and nutrition labels after a computer teacher had the sixth grade kids researching nutrition labels. My first grader's school has "health mentors", peers who are set up as "healthy" examples for others, which I am going to talk to the school about, seeing I can see the negative impact this can have. I'm not blaming, it just seems that these programs seem to be giving kids an earlier shove down the rabbit hole without providing much benefit.
atdt31_US

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Reply with quote  #12 
Another thing I wonder about:  do the providers agree that there is real benefit to intentionally carving out appointment time (either as part of the kid appointment, or separate) where the provider speaks to the caregiver without the kid/patient present?  I would think there could be consensus that not EVERYTHING needs to be discussed with or in front of the kid, especially in the prediagnosis stage and early in treatment.  That has been a major issue for us, perhaps because diagnosis has been so prolonged/elusive.  If there is consensus on this, perhaps there could be guidance filtered down to pediatricians, gi's, etc on how to avoid becoming part of the problem.  
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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.
Torie

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Reply with quote  #13 

THanks for doing this.

Parents should never be told "Don't be the food police."

ED takes a huge toll on the whole family.

Anosognosia is a symptom.

-Torie


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deenl

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Reply with quote  #14 
God, Laura, the replies are so great how are you ever going to whittle it down? The knowledge of people living the experience is so extensive and so real.

Thanks for all you do for bringing the ED family point of view to the fore.

Warm wishes,

D

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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.
tina72

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Reply with quote  #15 
Appointments should ideally been done when needed and not when set weeks before. We often had problems between appointments and they were solved here [wink]
There should be a 24/7 phone help if possible.
Teachers should know what to do with Eds and how to contact parents earlier.
ED is a big stigma in society. People still do think that our kids all just want to be models.

Tina72

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Kali

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Reply with quote  #16 
There are so many great replies here!

In the US insurance companies will only authorize 19 days in residential. As soon as the sufferer puts on a little weight they are stepped down, most times prematurely because insurance will not pay. And we all know that 19 days is not enough for someone's state to improve.
This creates a revolving door of treatment. Research has shown that if people are treated to full weight restoration and then have a 6 week maintenance period before stepping down, they have a much improved possibility of recovery.

Most US FBT therapists are not in network for the insurance companies and many people do not have out of network coverage. (At least the ones I looked into in our area, perhaps it is different in other parts of the country?) This is problematic for families who do not have the means to pay out of pocket. How to encourage more FBT therapists to be in network for the insurance companies?

I have been told some really discouraging things from "professionals" which I really could have done without and did not find helpful.

"It's not about the food" (ED therapist) I would beg to differ since recovery is all about normalizing eating with accompanying therapy in my opinion.
"Oh: (shrugging shoulders) "You just can't get them to eat" (From a psychiatrist who couldn't even be bothered to say to my daughter that the best way to get well was to be fully nourished even after I had mentioned that)
"Your daughter will struggle her whole life" (This from a therapist who had no plan or idea how to get my daughter weight restored) My daughter is actually doing very well at the moment after I took things into my own hands as far as weight restoration goes.
"She needs more freedom to take her own meals" (From a nutritionist during a time when my daughter was actively losing weight) I didn't listen to her and instead put even more oversight on her meals/eating and helped her gain weight.
"I can't speak with you; I have to protect your daughter" (from me? WTF...this from a therapist I had not spoken with before and my d. had found on her own with the help of her residential team. In fact the purpose of my call was to work out the BILL not to ask her anything about my daughter. It made me feel like she thought that parents with children with anorexia have "done" something to them to cause their illness. NOT HELPFUL. She could have just said "I can't speak with you unless your daughter signs the HIPPA forms (which she had not at the time) and that would have been completely different and non judgmental.
There also seems to be a very negative view of FBT in some parts of the eating disorder treatment provider world.

As a parent I did not think it is helpful to be met with initial suspicion from treatment providers while they ask initial questions to discover whether we are a dysfunctional family or not or whether my daughter suffered trauma of some kind. (The answers were no and no in our case)

I have had treatment providers refuse to speak with me even after my daughter has signed the paperwork authorizing communication. 

Luckily I never feel I need to listen to people who I think are wrong but was irritated to be paying for bad advice.

Kali




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eternalhope

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Reply with quote  #17 
Great responses. My d’s RAN was also triggered by the calorie counting in a nutrition class at school. Ugh. It’s terrible that they have to get so sick to receive a higher level of care due to insurance, and old school providers who look at current BMIs and not the previous history for admission.
Honey_Badger

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Reply with quote  #18 
Intervention at the earliest possible suspicion of anorexia is preferable to watching and waiting for the person to show diagnosable symptoms of full blown anorexia. 

Children who fall off their growth curve, and have even a few signs of possible anorexia  (restricting food categories, eating less than usual, compulsive exercising etc), should be considered "at possible risk".   Parents should be counselled how to implement full nutrition and reduce physical over activity until the child is back on her growth curve for weight OR no longer shows some of the signs that were worrisome.
EC_Mom

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Reply with quote  #19 
ED is not a 'choice' and parents aren't at fault.
ED is a brain disorder.
Refeeding is priority and means MUCH more calories than most people believe.
'Recovery' is not about achieving a particular weight, and most practitioners set the 'target weight' too low.
tulrika

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Reply with quote  #20 
Hi, my input 😉

- eating disorders need to be called as they are - a serious physical illness which affects the brain and the body, for reasons yet to be fully understood.  It is not a choice - not all people who lose/gain/fluctuate in weight will succumb to this illness, just like not all people will get cancer etc.  We need to fully medicalise it rather than use public discourse which suggests it as a psycho-social condition, then maybe the medical and wider community may better understand its severity and that it is NOT a choice or immediately fixed.  The medical/wider community has been very successful in getting depression recognised as a dangerous illness, the same needs to be done for eating disorders.
- immediate and early intervention is important and scare tactics are necessary.  No-one goes softly on a cancer that is metastatic. My daughter got the shock of her life when she heard me crying behind closed doors - I came out to find her trying to eat porridge because she was so scared - and I realised that the gentle approach simply doesn't work when brains are affected.  The most immediate and important message for AN and other EDNOSes is to get weight on and keep it relatively stable - their brains will not recover without it and any other treatment is less likely to work.  Hospitalisation should be an early option, even if just for monitoring and the message that they are seriously ill.  This illness has a very high death rate if left untreated, the statistics need to speak.
- recovery is possible, but should be treated like cancer in remission - regular health checks should continue long after the patient is technically 'recovered'. The stress on their bodies and brains while they were ill puts them at higher risks of other mental illnesses and some physical illnesses, as well as social problems such as alcohol abuse etc, and they will continue to receive the message that they must constantly continue to look after their health.  Too many patients drop out of the system as soon as weight is restored or not long after, without adequate follow-up or recovery time.  
- It may be helpful to separate out eating disorders surrounding weight loss/control (eg AN, BN, etc) with eating disorders relating to unregulated/overeating, the same as people find it helpful to think about cancers separately.  While the core causes may be found to be the same (brain imbalances/predispositions etc), the different types of EDs and their risks - and the community understanding of the problems - I argue are different.  

Hope these ideas help.  I feel that stigma continues to attach to EDs because there is no clear, consistent message about them as a medical/physical problem.

atdt31_US

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Reply with quote  #21 
Consensus on this point? Assuming a good “state” and no organic cause (like cystic fibrosis or IBD or prematurity, etc) there is still a BMI at which a person is too low weight for their height to be considered healthy and such person should “refeed” to a certain benchmark. If there is consensus on that premise, what BMI is always too low and to what benchmark should the person refeed
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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.
deenl

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Reply with quote  #22 
Full nutritional rehabilitation and FULL WR are the first steps. It takes many months for the brain to heal. Patients may need support to continue eating properly for months and even years. At this stage other supports will likely be helpful such as psychotherapy and SSRIs

Psychotherapy and SSRIs are usually not helpful in the early stages as the brain is too compromised to benefit. Other meds may be appropriate depending on the person.

The treatment journey is likely to be many months if not years and should include tapering follow ups to ensure the patient is continuing to thrive.

There is a typical patient but the range around the average is very broad and even more complicated when there are co-morbids.

The CORE of the disease in all its forms is the inability to consume adequate nutrition for health, the rest is just noise (including comparisson to 'normal'weight ranges [mad] either at the diagnostic or recovery stage). For example, it took us many months to even get a proper diagnosis because my son was only 12, was a boy, had no body dysmorphia, no drive to be thin or have big muscle, had no fat phobia.  He lost additional weight inpatient because they couldn't see the wood for the trees. The psychiatric community must become more aware of the physical effects of malnutrition on the brain. All my son's OCD, ASD, withdrawal from social contact, depression and most of the anxiety totally disappeared with nutritional rehabilation. They were looking at all sorts of other diagnoses/treatments and missing the nose on their faces. Even if he did have all those things, he still needed to be fed first before he had a bloody heart attack.

If only we were Borgs and had hive minds [rofl] it wouldn't be so hard to effect institutional change.

D


__________________
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.
melstevUK

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Reply with quote  #23 
Some great replies.

For me the biggest institutional change which is required the world over is FLEXIBILITY of response from clinicians.

So often we met with 'this is the way we work' approach, which led my d to having appointments with no weight going on, having a meal support programme offered but which rejected anyone who wouldn't try every single sandwhich filling on the menu, a refusal to offer IP until she was a day away from death.  The list goes on.

Each patient and the supports available to him/her need to be assessed, weight gain/stopping purging behaviours have to be the main aim of the engagement process and when no progress is made an immediate step to intensive support, (outpatient or inpatient) need to be offered.

Instead, British ed units are clogged up with desperately sick patients who have been left until they are on their deathbeds before they are taken in and then they need months or over a year before they can be released, often to go straight back downhill because transitions are badly managed.  Shorter IP stays before the patient becomes so unwell need to be the norm instead of the exception. 

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LauraCollins_US

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Reply with quote  #24 
Amazing, helpful, and very interesting ideas here. I've been learning a lot by asking this question -- here and on Facebook. I honestly don't know if this is going to be easy, or difficult, to find statement everyone agrees on. It could be very easy, because it is the details that divide us. Or it could be impossible, because there is simply too much invested in opposite points of view.

What's interesting to me is that what parents say is still different to the statements put forward by patients, and still different to hear form providers.

Learning, sorting, organizing, and THANKING YOU ALL for your passion and generosity here!!



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Laura (Collins) Lyster-Mensh
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atdt31_US

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Reply with quote  #25 
I don't usually go to the FEAST Facebook page, but based on your post above, I went and read around a bit.  I see one person asked if there was CME hours for attending the FEAST program in April in Chicago .... I would hope at some point there could be consensus that providers, new and experienced, can learn a ton from the caregivers --- I would rather go to a physician/psychologist that attended such a program than one who got CME hours learning about how dessert is bad for kids and good nutrition necessarily includes schools serving cottage cheese instead of ice cream.  I know there are only so many fights you can fight, but I have no doubt providers would leave the FEAST program greatly enriched and I wish they could get CME for it ...


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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.
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