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

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Enn Show full post »
Torie
Thanks, Kali.  This is indeed an interesting thread, but a confusing one for me.  (The most confusing thread I can recall, actually.)  

Part of my difficulty is in sorting out how much of the difference in opinion on this thread is due to differing beliefs, and how much is more like a difference in the way we use words.

For example, along with AN, my d experienced SH, suicidal ideation, anxiety, and depression.  I tend to think of those as separate things as opposed to being all of a piece.  So to me, when we took all the needed measures to minimize suicide risk, that was not dealing with AN; it came under a different category in my mind (SI).  Similarly, when we tried other things to try to minimize cutting, that didn't register as dealing with AN, but rather as dealing with SH.  Etc.  Maybe I should think of them as PART of ED instead of thinking of them as existing ALONGSIDE ED- I don't know.  Honestly, I don't care too much - if someone shows me that I should change my definition, well I would be okay with that.  

I guess maybe I define AN more narrowly than others do?  Maybe my definition is incorrect or maybe this is just a matter of opinion and not a right or wrong thing?

Do you know what the disagreement is?  I can't figure it out, so I hope someone will help me with this.  I think we all agree that SI, SH, anxiety, depression etc. need to be addressed - no one thinks we should ignore those.  For the AN itself (BN being a horse of a different color, but meriting equal concern), I do think we feed feed feed.  Get the weight up, keep the weight up, that was my goal and I believe it is what dragged my d back to the proper side of the rabbit hole.  There is disagreement about this?

Of course we need all the help and support we can find to help on this terrible journey.  I can't imagine there would be any disagreement there.  I think everyone hopes to be able to treat at home, as one would hope with any illness.  And when a higher level of care is needed, one hopes that it will be 1) available and 2) effective.  It makes me sad to read of someone feeling judged here.  I hope no one feels that I am judging.  There is so darn much luck involved with this (and most any) illness - crazy bad luck to be drug down the rabbit hole in the first place, and then in the battle that follows, some have much worse luck than others.  As one's luck can change at any time, it would be silly (among other things) to be judgmental about this.  

I'm not sure how much of that makes sense or is pertinent to this thread.  THanks again, Kali, for your reply. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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sandie
I agree that it is complex and confusing. @tori, I think you are right that we all probably define things differently. 
I find the term anorexia misleading and very narrow. I think of the illness affecting my D as including anxiety, low mood etc with the eating difficulties one manifestation. I personally don’t find it helpful to list my D as having anorexia, anxiety and depression and I suspect that the reason they are categorised like this is because of a lack of understanding of how the brain works. I think there is still a lot to learn. 

Xx

Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
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Torie
I have been thinking about this study (and this thread as a whole).  It is great that someone is surveying ED caregivers, but this particular paper seems to conflate participant characteristics (mostly moms involved in active battle with ED) and clinical results (is the treatment effective?).*

This results in what I believe to be an unwarranted first-paragraph finding that "... just 21 percent make a full recovery...."  I mean, I don't see how they can make such an assertion without querying people who have completed treatment (instead of mostly hearing from people while treatment is still underway).

Foodsupport said, "Some here are convinced that the thing that led to their child's recovery was sufficient weight gain alone, and that the reason others don't see recovery is that there is insufficient weight gain, others have had a lot of weight gain and failed to see improvement so look for that other missing ingredient."

In my 6 years on the forum, my impression is that it is often impossible to achieve sufficient weight gain.  I think(?) we can all agree that in the absence of sufficient weight gain, ED will persist.  I can think of few if any families who have managed full weight restoration and subsequent weight maintenance (with a little more each year) without a good result. 

OTOH, I can think of many families who - THROUGH NO FAULT OF THEIR OWN - have not been able to reach weight restoration.  What accounts for this difference?  First and foremost, I think, is worldwide dearth of modern, competent treatment.  Over and over and OVER we hear of people receiving bad advice; often such bad advice that it is worse than no advice at all.  Truly makes me want to scream.

Another big factor, I think, is inability to "hit it early; hit it hard."  We just don't know how serious this is - or what we can do about it - in the early days when we would be able to kick ED to the curb at home.  

The Torie family was blessed (so very blessed) that an angel in the community reached out to me repeatedly (kindly, but insistently) to prod me to action very early in the game.  I shudder to think how things would have gone otherwise.  The situation was deteriorating by the week (day?), and I was blissfully unaware.  I think we pretty much all are at that stage of the game.  

And then, when I flailed around looking for professional help, the initial "help" I found was no help at all.  Until I found this forum.  

The message I got here was loud and clear: Feed her.  That's what saved my d.

I could do that because 1) I still had loads of parental authority; 2) I got good advice here, and; 3) my d had not yet lost too much weight.

Of course, food was not the ONLY thing she needed.  Food is not the only thing any of my kids (ED-kid and non-ED kids alike) need, nor is it the only thing I need.  But it is what was needed to rid the house of ED.  

So yes, FoodSupport, I am one of those parents.  Feed on, that's my motto.

*Editing to elaborate on this:  Hopefully they addressed this in their actual paper (which I haven't read), but when you survey FEASTIES, you are mainly surveying people who are still battling ED; and there is no way to know how many of those will ultimately prevail.  I mean, if you survey parents who are working on stage 1, zero percent will report that their child has recovered.  By definition.  

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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ValentinaGermania
Nothing to add, Torie. Only that you were that angel here in that community for me 2,5 years ago and that I will forever be thankful with that.
I can also say by own experience and that of a lot of parents I am in contact with that there is no family that saw no good outcome after 1 year maintaining a really good weight. Most that struggled or relapsed did that because professionals had set target weights too low or given back control too early and the result was weight loss. I did see no patient relapse without weight loss before. So yes, it is not ONLY about weight, but if that initial part is not there (WR), then recovery is not possible in my personal opinion.
Keep feeding. There is light at the end of the tunnel.
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Enn
I’d like to summarize a few of my thoughts.
A malnourished child has to be nourished. End of. That is lifelong task for us as parents first. It is the beginning and middle and forever of ED.

Then we teach them how to do it for themselves. This is like everything we do as parents.

We continue to feed them to keep up nutrition AND concurrently, we implement many psychological strategies to help our kids as they grow , mature, develop. We are doing more than  ‘just ‘ feeding. We just have not talked about  it like that here (not very often anyway).


I am not sure we are always aware that we become our child’s doctor and therapist. And it is 24/7 on call. That is what I feel personally and strongly.
We use loose DBT skills, we use distress tolerance, temperament (temperament based therapy), CBT, CRT, exposure therapy, radical acceptance, not just for food but for socialization, anxiety, depression, OCD other phobias. We use psychological tools to decrease self harm. We learn what suicidal ideation is and who to call. We learn how to stop purging. We also use meds if needed. We work on rigid thinking. We learn a new way to communicate with our kids. We do so much psychological work with them.
We may not specifically name the strategies, skills, tools we use to help our kids, but the fact is we are using psychological techniques/ expertise to treat our kids all the time. Every day.
We model behaviour and challenge their thinking. We show them hope for their future. This is what a good therapist would do, wouldn’t they? And we are so invested because we love them!! We would never ‘discharge’ them.

The help we provide, on top of food advice, on the forum, are psychological tools that we don’t name outright so that WE can treat our kids - I think, as well as the amazing the peer support and resources and a kind safe environment.

Just an observation. (I had not heard of DBT Or distress tolerance or radical acceptance until I joined the forum). I had to learn to approach my d differently, like a psychologist would.

I think all of us implements psychological strategies to get them to eat (incentives and disincentives). We also use these skills to help their brains/ emotions develop in a healthier way.
Again ,just me thinking out loud.
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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Enn
@Torie,
The link to the Facebook discussion is around here somewhere and may help to answer some of your questions about the study.
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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Torie
Enn wrote:
@Torie,
The link to the Facebook discussion is around here somewhere and may help to answer some of your questions about the study.

Thanks.  I don't really do Facebook. but someone else may wish to post excerpts if they feel that makes the study look more ... scientific.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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deenl
Laura blogged about it on the FEAST website here.  And also did a Tough Topics session on it here. The video link is a bit down the page.

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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Enn
I don’t think it was ‘scientific’ in the truest sense of the word. no control group vs treatment group. It was parents opinion and using the data the parents had. 
Of course if your child is ‘cured’ you may not have had access to this study and could not ‘up’ the recovery rates because you may have left the forum. 


It was designed to get parental opinion on what recovery looks like based on physical and psychological factors that they asked about. 
it is biased in that forums like  this one and others around the world were sampled. And not ED clinics where there may be more variety(not sure if that is the best word) of cases and demographics. 
Those who had computers of course could do the study and those without could not.Those sampled  were more affluent and likely had more access to other interventions than those who did not do the survey- maybe? 
I do feel that the outcome was useful in that it allows future research to include parents definition of recovery/remission. And helps them look at timelines of recovery/remission that WE find important and not just weight.
It opens more doors and more nuances I think in research that need to be explored. 
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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Enn
Thanks for posting the links deenl!
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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Torie
Thanks, deenl.  Laura's blog post is great - too bad they didn't have her write the article. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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deenl
👍

I don't disagree with the need for weight restoration although I have found the restoration of nutrition to be even more important than weight. My son has been growing non stop since he started to recover and has always been between 3 and about 7 kgs lower than I would consider weight restored. In spite of that, he is thriving in many areas of his life; he is enjoying and doing well at school, he cracks us up with his sense of humour, he hums and sings through his day, he is not afraid to show his full character at school, quirky as it is, he sets high standards for himself without doing more than shrug if he doesn't quite meet them, he doesn't sweat the small stuff, he says 'Yum. I love ...' regularly. He is, in short, happy. There are still shadows of ED, he does not eat outside the 3 meals / 3 snacks and would always choose a portion smaller than needed if not supervised. But his body is getting all the nutrition it needs and he is not at all tortured by ED thoughts. We still need to rewire some of the neural networks that linger from the ED period and for him finish growing and puberty before we can put it all behind us.

Moving on from my personal experience, I want to say something to those families who do not get to a place of remission or recovery either with or without WR. I think that we can all agree that Julie O'Toole of Kartini Clinic is a huge proponent of FULL weight restoration and is an enormously experienced ED doctor. I want to share with you all a quote from page 204 of her book Give Food a Chance.

Quote:
Another issue that can arise is the observation by parents that, while some children with anorexia nervosa seem to heal and return to their lives with successful weight restoration alone, others do not. Despite adequate weight gain, some children and young adults will remain psychologically devastated and unable to move on, and will need more treatment than straightforward weight gain. Some have co-occurring disorders such as obsessive compulsive disorder or other severe anxiety disorders, some have "just" a very severe, disabling eating disorder. For these children we have the partial hospital program, or day treatment unit. But at all levels of care, parents are essential to a good outcome, and at no level of severity are they to blame for their child's illness.

Over the years, many parents have told me that they are ashamed and hurt that "other parents" are able to successfully "cure" their child at home where they were not able to do so. This is a misplaced self -accusation. Anorexia nervosa and other eating disorders are brain disorders, not merely conditions of under-nutrition. We do not know why some cases of anorexia nervosa will remit with re-feeding and others, while improved, will still need a lot more supportive treatment. No brain functions well when starve.  At a minimum it wil process more slowly, but the brain can also cause many "down-stream" malfunctions as it struggles to keep the person alive during what it perceives as a "famine": Alterations in leptin, cortisol, calcium, phosphorus, sex hormones, insulin, and glucose metabolism.

Do degrees of recovery / remission with adequate weight restoration alone vary from person to person? It has been our experience that this is the case, and that no parent need feel guilty or inadequate if "mere"weight restoration does not return their child to their pre-eating disorder functioning.


I was reading around because somewhere in the back of my mind I have a memory of reading something by her that said that psychological recovery can be difficult or take a long time. But physical recovery or nutritional rehabilitation is a goal in and of itself. Holding your child in physical recovery will help to prevent the medical consequences of malnutrition and provide the best chance for psychological recovery to occur. I take from this that even if you "fail" at refeeding any and all improvements in nutrition are ultimately contribituting to better health outcomes for your child.

Personally, I believe that WR should be a primary goal and one we strive for with all our hearts. I also believe that those of us who have a more straight-forward recovery journey should be very sensitive to the families who have not. They are the ones who are very vulnerable and emotionally worn out and take much to heart. Families who are struggling have told the forum many times that the can feel invalidated, disillusioned and dispairing when faced with messages saying that WR will sort everything or that they need to try harder that are not nuanced to the situation - personalities at hand, work commitments, parental illness, lack of money, complicated or severe ED, professional and social support, history of trauma and loads of other things. We have also spoken many times about how difficult communication is over the internet - how do I know that my kid's freak out is (EDworld) normal, for example; how do I know that someone I am trying to encourage is really getting that message without tone of voice? What I do know is that it hurts my heart to hear of parents feeling ashamed and hurt becasue they have had more difficult circumstances to deal with. And we can all help to ease their pain and support them for the stage they are at.

And for those who have kids who have recovered with WR or with WR + therapy or with WR + a slip or two or with WR + time or with WR + a life worth living or with WR + medication or whatever your individual journey was - ðŸ™ŒðŸ˜ðŸ˜ I love knowing how many people recover and what worked for them.

Warm wishes,

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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debra18
I think one of the reasons recovery is difficult is practically speaking supervised eating 6 times a day for several years is very difficult. And it's a hard balance between engaging in life and social activities and supervised eating. And many professionals move on from the supervised eating too quickly from what other people say. If you are able to supervise and know how much your child needs to eat, the weight part is less relevant in my experience. And I agree with Torie that early intervention is key. I still think there are some situations that if parents saw from the first day the child was restricting and didn't allow it to start or any other ED habits to start maybe the eating disorder would not even develop.
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deenl
I think that's a really important point, Debra. I am lucky enough to be home based so for the first two years all meals were supervised by a parent. The second two years all except lunch and snack at school and even then his two brothers sat close by and would have noticed any funny business. So yeah I think that has been key to our so far, so good story. 
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.
Quote
Torie
deenl wrote:
Families who are struggling have told the forum many times that the can feel invalidated, disillusioned and dispairing when faced with messages saying that WR will sort everything 

I've been gone from the forum for quite a while, but I can't remember ever reading a post that said: "WR will sort everything."   Speaking from my own experience on the forum, that was not the message I heard; rather, the advice I received was entirely consistent with the fact that my d still wrestles with an anxiety disorder 5 years post wr.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Torie
debra18 wrote:
I think one of the reasons recovery is difficult is practically speaking supervised eating 6 times a day for several years is very difficult.


Agree.  Sometimes it is flat-out impossible.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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PurpleRain
Have you seen the video of though topics about the article that deenl posted? I did and was so happy to realize that the new member of feast board that participated (around the middle part) is the pediatrician I'm in contact with (she lives in the same country than i do but really far away), how fortunate am I? I don't really have a team but I get to write and talk to her! And of course I have this wonderful forum. I'm feeling really lucky at the moment (and I haven't feel like that in a loooong time). 
13 yo d started to eat "healthy" September 2018, she had a growth spurt a bit later, followed by tummy bug. She started restricting breakfast and school lunch in January 2019 (that we know). We succesfully refed at home.
I have found inner strenght, patience and compassion that I did not know I had.
Never retreat, never surrender
keep feeding
 
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ValentinaGermania
Wow, that is really great news purplerain!!!
Keep feeding. There is light at the end of the tunnel.
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Torie
SO happy for you PurpleRain!  That is priceless. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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PurpleRain
Thanks Tina and torie, it is priceless indeed
13 yo d started to eat "healthy" September 2018, she had a growth spurt a bit later, followed by tummy bug. She started restricting breakfast and school lunch in January 2019 (that we know). We succesfully refed at home.
I have found inner strenght, patience and compassion that I did not know I had.
Never retreat, never surrender
keep feeding
 
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Enn
PurpleRain,
It is such a wonderful thing to find someone that you can connect with that can help you during a difficult time. That is truly a special gift.
I am pleased for you. 
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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PurpleRain
It makes all the difference, specially if you don't have a team (like me). What is specially useful is that she is a mom of an ED d AND a pediatrician. 
13 yo d started to eat "healthy" September 2018, she had a growth spurt a bit later, followed by tummy bug. She started restricting breakfast and school lunch in January 2019 (that we know). We succesfully refed at home.
I have found inner strenght, patience and compassion that I did not know I had.
Never retreat, never surrender
keep feeding
 
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