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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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If you need help using the forum please reach out to one of the moderators (listed below), or email us at bronwen@feast-ed.org.

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sk8r31
Please join the F.E.A.S.T. Facebook Live Event tomorrow, Nov. 21st 8 pm UTC to discuss the paper released yesterday by UCSF entitled 'Many Patients with Anorexia Nervosa Get Better, But Complete Recovery Elusive to Most'

It is hoped that one or more of the study's authors will be available, along with some of F.E.A.S.T.'s Advisory Panel members and our F.E.A.S.T. parent community. 
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Scaredmom2019
Well this is a depressing article. Finding even less recovery chances than previously stated. Ugh. 

It probably wont be in our lifetime but one day we will find out we have this all wrong. Makes me cringe and reminds me to ALWAYS be mindful of MY perception of D's health and treatments and to not always leave that to the "experts".

Today I let D skip treatment and we took a mental health day - the irony in taking a mental health day FROM a mental health program. Anyway, was the most normal I've seen her in a long time. Ate well, mood good etc. I know the experts would say dont skip treatment but I knew it was what she needed just for today . 
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Enn
I think it will be a very interesting discussion.
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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sk8r31
I actually see some real positives in this article.  And it should be noted that the sample size is under 400.  I think there is so much scope for more research.  Parent input on recovery is very much valued.

“Parents are schooling us on how it should be defined,” said Accurso, who is affiliated with the UCSF Weill Institute for Neurosciences. “We found that parents have a much broader view of recovery, which included psychological wellbeing and building a life worth living. Researchers are missing the mark in defining recovery by weight and/or eating disorder symptoms in the absence of these other factors.”
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Scaredmom2019
Agreed just hard when you need the help NOW. 
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Foodsupport_AUS
I think it is really important to remember what this article represents. It does not mean that only 21% of people recover from anorexia fully. The study sample was mostly from parents in the eating disorder activist community, the link to the survey was posted widely on the FB page and I think here. . Those who have sicker kids tend to spend a lot longer in the community. There are a few whose kids make rapid recoveries and stay on but they are the exception. 

It says a lot more about what people consider recovered - quite a few studies report weight only goals, others include mental health assessments, despite this some parents don't always feel their child is fully recovered even when meeting those goals. There is full recovery, it is possible, there is always room for  marked improvement - definitely don't lose hope. If possible join the Tough topics talk to hear what is discussed. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Enn
I agree with Foodsupport above. It was a survey  of , basically , parental opinion and not a scientific study measuring outcomes. It questions the definition of recovery and how parents view it, beyond the physical. It was really a very small sample size so I am not at all sure what It really means. 
I do think it was posted here. I do recall there were questions where some had difficulty adding in data like historical weights and i recall I left some blanks and did what I could. 
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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LauraCollins_US
To view live and participate: https://www.feast-ed.org/event/tough-topic-thursdays-parents-know-best/
Laura (Collins) Lyster-Mensh
F.E.A.S.T. Executive Director
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deenl
Just to clear up any misunderstandings - UTC stands for Co-ordinated Universal Time. It is a convenient way to state the time when your audience is world wide, like ours. There are many websites that can convert it into your local time. Below are a few of the many converters available.

https://www.worldtimebuddy.com/
https://www.timeanddate.com/
https://www.worldtimeserver.com/
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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
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sandie
I hope to join in if I can find quiet place. Sounds interesting and great to explore recovery based on parental voice. I agree with scaredmom2029 though- the title of the paper is unfortunate and possibly misleading and my heart did sink initially when I read post. 
Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
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debra18
Yes it is a little strange to use the FEAST forum parents for this survey when most people here are seeking support and few people stay around once their kids are recovered.
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deenl
I think it is understandable when you consider what they are trying to identify and explore. The title of the piece should be worded better. However, it is great clickbait to get people reading. (sigh, what a world we live in) Also, I strongly disagree with putting percentages in the public sphere when they are based on such a weighted population.

I hope to be able to watch the video later.

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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
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kazi67
Fabulous discussion as always ladies!

I think it IS important that for many it’s not simply just WR and life just slides back to normal 
although of course as we all know WR is the first thing we need to start recovery 

BUT  as we know it’s not easy and definately not fun at all to be made to feel like your a failure if this isn’t happening or you are struggling with this for a variety of reasons but not for lack of trying and if you are throwing everything you possibly can with the means and services and wait lists and/or lack of $$ or even if you do have the$$ your kids ED is more sneaky and cunning and 10 steps infront of you and useless GP  etc etc etc 

or if your lucky enough and your kid has no comorbids to deal with
that throws another spanner in the works of this very serious life threatening illness

at one point my d believed if she inhaled the car fumes she would inhale calories 😳
pretty sure her brain was seriously effected 

parents know their kid best but parents alone aren’t always fortunate enough to  know how cunning this illness can be (hand up) and I believe in these cases carers/parents/patients also need the expert support of experts in the illness
so hard when we also get messed around and waste precious time trying to find that expert help or GP fails to refer onto such services
we muddled around whilst me d became so entrenched in the illness 
why??? 
If i had the answer to that my d may have simply just WR and returned to her life 
unfortunately it hasnt been that simple for her/us
and I guess that’s the reason we keep reading/learning and contributing to the forum to try save someone else’s kid the heartache and learning/wising up on all the tricks 🙁

Then your kid turns 18 and overnight magically becomes an adult, can’t feed herself but apparently you don’t need to be involved  in her treatment 
sigh!

its so so tough!
im rambling sorry 
my d is doing ok atm
always hate saying that though as the last 2 times I thought that she had 2 more IP admissions 

we take day at a time and as discussed,  trying to make a life worth living 

sorry for ranting 
hang in there everyone and don’t give up
the road to recovery has many gold stars along the way and we appreciate all the baby steps in the right direction so much more!
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BxMom
I have access to the article if anyone is interested.  The file is too large to post.  Email if interested. Thanks
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