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ed_newbie

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Reply with quote  #26 
Excellent thread. LSUYE has worked for my d thus far. We have been lucky. But I am a realist. I know it may not work as well or even at all as she progresses through her teen years and co-morbid depression and anxiety create different realities. A disorder this complex requires customization in treatment approaches taking into account literally hundreds of variables. One size fits all just doesn't make sense.

No one is a failure on this forum. You're the bravest group of people I've ever had the pleasure of connecting with.

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"Lineage, personality and environment may shape you, but they do not define your full potential."    Mollie Marti  

ed_newbie

14 yr old d diagnosed with AN late December 2015 at the age of 12 after a 23 lb weight loss during prior 3 months. Started FBT/Maudsley at home on Christmas Eve with support from amazing local nutritionist specializing in ED and trained in FBT. WR Feb 2016 and now chasing growth and taking one meal at a time.
Colleen

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Reply with quote  #27 
After reading through this thread, one thing has occurred to me (probably because I'm such an Old Timer here ATDT):

LSUYE is a fairly new term here, and I believe it was coined by YogurtParfait.  It's a good term and it describes a common tactic that parents have employed with a pretty good success rate.

But before LSUYE, we had Magic Plate.  Magic Plate just means that the parents are in charge of the food--the food just appears magically!  It doesn't quite say "how" in the same way LSUYE does.  Your child may completely balk at LSUYE but might be able to eat with positive reinforcement, or allowing some limited choices, or with rewards, or by allowing you to spoon feed them.  It doesn't really matter HOW it happens--just that it does.  It's great if it happens at home, but it can happen in a hospital or treatment center too.  Food is medicine.  Plates are Magic.

Personally, I'm dropping the LSUYE acronym in favor of the more generic Magic Plate from now on.  I think it's more accurate.

(For the record, we used to differentiate more between AN and BN here, but now we tend to just refer to ED as ED.  The lines between eating disorders can be blurry and artificial, and ED is generic and inclusive.)

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Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
Morgana

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Reply with quote  #28 
The only thing that worked for my d ultimately was ng tube feeds in ip with 1-1 observations and the threat of being sectioned and medicated or sent to a unit across the country and being sectioned and medicated there. 

We refed her at home for 4 months and in the early days magic plate worked, but after a while she realised she didn't care if life stopped. Nothing motivated her, she lost and let go of so much. 

Then she got to ip and everything they have in place to encourage them to eat ended up not working. Even with the tube she was able to refuse. No one wants to use a big stick when we're told a carrot works best, but the "set of consequences" was the only thing that got my d complying with feeds.

It's only now, at a higher bmi and closer to her target weight, she is becoming motivated by external factors such as having the tube out and being out of ip for summer, going back to school in Sept etc

(It could be that with her increased cognition that the ed is able to strategize better ie get home to restrict, but I'm taking each day as it comes!)

I know for some newbies reading things like ip, tube feeds, sectioning etc it can be scary and discouraging, but for those who need to go that route when magic plate at home doesn't work, it is important to know we as families have not failed. We are providing our very ill children with the higher level of care they need.

Their illness is not a reflection on us as parents or people. 


__________________
15yr old d. June 2014 stomach pain. Medical investigations until Feb 2015, referred to CAMHs dx food anxiety. Kept restricting and losing weight until July 2015, medically unstable. Began intensive re-feeding at home. Re-evaluated by psychiatrist, dx Autism Spectrum Disorder and Atypical AN.
Found out it's actually Typical AN.
IP from Oct 15, ng tube Nov. Re-started eating food July 2016. Discharged from IP August 2016 97% weight for height.
Torie

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Reply with quote  #29 
Quote:
Originally Posted by Colleen
But before LSUYE, we had Magic Plate.  Magic Plate just means that the parents are in charge of the food--the food just appears magically!  It doesn't quite say "how" in the same way LSUYE does.  Your child may completely balk at LSUYE but might be able to eat with positive reinforcement, or allowing some limited choices, or with rewards, or by allowing you to spoon feed them.  It doesn't really matter HOW it happens--just that it does.  It's great if it happens at home, but it can happen in a hospital or treatment center too.  Food is medicine.  Plates are Magic.


Hmmm ... I like to think that Plates are Magic for everyone, but I think what we're hearing is that for some, they're. just. not.
 
Here's what the Hall of Fame posts say about Magic Plate:

5/15/2008 "Second, we used the magic plate.  We prepared the meals and snacks and served it to our d (16 yo).  She had to eat everything we gave her or life stops.  Some parents have sat at the table for hours waiting for their children to eat.  Life stops until they eat.  The magic plate takes all choice away from the child."
http://www.aroundthedinnertable.org/post/show_single_post?pid=26096992#gsc.tab=0

6/28/2007 "I guess what I am saying is that even if you can't keep them from counting, you CAN keep them from choosing based on calorie counts by not having them choose at all and doing the magic plate thing."
http://www.aroundthedinnertable.org/post/show_single_post?pid=18792692#gsc.tab=0

8/11/2008 "I prepared his plate for him, placed it in front of him and let him know that I expected him to eat it all."
http://www.aroundthedinnertable.org/post/show_single_post?pid=27919654#gsc.tab=0

I still think the first, best thing to try is Magic Plate with LSUYE.  Unfortunately, as with many/most illnesses, the first, best thing to try will fail for some.  That doesn't mean that the sufferer failed, or that the caregiver failed, or that it was a mistake to have tried it. It means they will have to move on to try something else.

Such a tricky, difficult, awful illness. xx

-Torie



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

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Reply with quote  #30 
Quote:
Originally Posted by Torie
I still think the first, best thing to try is Magic Plate with LSUYE.  Unfortunately, as with many/most illnesses, the first, best thing to try will fail for some.  That doesn't mean that the sufferer failed, or that the caregiver failed, or that it was a mistake to have tried it. It means they will have to move on to try something else.


That's exactly it, Torie.

Start with what has the best chance of working, give it a good shot, reassess.

Thanks for putting it so clearly,
D

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Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid. Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. 

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] )

HateEDwithApassion

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Reply with quote  #31 
This thread is amazing, and much needed. Thank you - every child and every family is different. I guess as I was reading your post, it really hit me hard that this is the reality. I'm sorry you sometimes feel like a failure. I often feel like a failure myself, but at the same time, it's so important to know that there are kids who are getting better using FBT or other methods. If I didn't have that hope, that recovery could really happen regardless of the path used, well.. shoot. I'm not sure how I would keep doing this.

I think you've hit the nail on the head. You have to trust your instincts. If they are wrong, you'll learn quickly. We all make mistakes - me, many times over. Then you'll circle the wagon, and try a different approach. You know your D and it sounds as if you've got it figured out!

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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
Sotired

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Reply with quote  #32 
Yes.im sorry colleen but you sort of missed the point.the point of this thread is that magic plate or LSUYE doesn't work for everyone.if you read my post then you will understand I was up against more than simple refusal that could be got around.that FBT is great for the 50% of people it works for, but it doesn't work for everyone.we were forced to do FBT even when it clearly didn't work for us.we actually would have benefited from the old approach our hospital used to do where they refed and sent home after six months.and kept doing this til our d learned.
With FBT if it doesn't work,you the parents are blamed.thats how it is.no one says 'actually this model doesn't work for you,let's try something else'.
Instead it's on and on about how this has the best chance of success.yup.except if it's not working in your house as it didn't in ours something else should replace it.on here we often don't know what other stresses people are dealing with.im the exception rather than the rule there I think! But most won't talk about other stresses they deal with.thats important to acknowledge because obviously you want to save your kids life,but other stress doesn't go away because of that.i don't have family support who will take my kids for the most part.
This thread talks about what the reality is for kids who don't care about magic plate,LSUYE or leverage.
It's about what happens THEN.
Here endeth the lesson.

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Sotired42
kas_US

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Reply with quote  #33 
Oh my gosh! this topic is so timely for me too. I am feeling completely lost. I can't go into details, but thank you for those who have shared that you are also in the OTHER 50%. It's nice to not feel alone.
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deenl

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Reply with quote  #34 
Hi ooKoo,

Quote:
Originally Posted by ooKoo
My H and I went along without her for a number of times, which was useful for us.

This is a good tip for parents. I think just by itself it is helpful to go somewhere and talk with your H and for us having a referee helped. Not that our relationship is in trouble but the topic of your kids life and health are so emotional and the intensity can get a bit out of hand!

Quote:
Originally Posted by ooKoo
My D has just been put on the waiting list for CBT, which she hasn't had before.  It will be interesting to see if that helps at all. 

I would be really interested to see how it goes. No chance of getting S anywhere near a therapist at the mo. but I would love if he did something later in recovery. Best of luck and keep us posted!

Quote:
Originally Posted by ooKoo
I feel another crisis rumbling around here and I know how a crisis rolls with my super-resistor. *sigh*

Ah, bummer. I'm sur eyour spidy sense is right but I hope it's not. Fingers crossed.

Take care,
D

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid. Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. 

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] )

deenl

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Reply with quote  #35 
Hi Sadmom,

Thanks for the detailed reply and the perspective of someone a bit further along the way.

Quote:
Originally Posted by Sadmom
Personally, I think it is helpful for other parents to know that Magic Plate and LSUYE do not always work, that's right do not work for some of our kids. We are not worse parents, or less caring parents because these evidenced-based methods failed. We are not failures. 

This is a very important point to have out in the open. I am hearing a lot of difficult emotions regarding FBT that has not worked. It makes me sad because all the effort and love everyone puts in is the same but the results are different. I would love to think that this thread can help some families to gain a different perspective and be gentle with themselves.

Quote:
Originally Posted by Sadmom
What has worked a bit? Time. Distance. Supporting her (emotionally, and yes, financially too), paying her tuition, showing her that there is a life worth living, accepting a lot of things about her choices that I am not fond of. It is her life. Not mine This illness is not a choice, of course, but (non-compliant) YA or adults have to take some control over their own destinies. 

Love the list of what works for you guys. I agree nobody chooses to have this illness but it is more complicated than that. I know my son finds it difficult to eat 6 times a day. We are months at it, in the same routine and still once in a while he will lose it because it is all to hard. BUT I sense his inner strength, somehow, he gathers himself, calms and eats 6 flipping times a day. What a little hero. So choice is not the right word but underneath there is a little spark and I have to provide the tindling to make the flame. Too much and it just goes out.

Quote:
Originally Posted by Sadmom
I can no longer give up my whole life entirely for my D. I have a life, of sorts, now. Not what I envisioned, but I am carving out something, and I cannot use every last bit of emotional or financial resource I have for my daughter. Some of us can. Some of us can't and that is also the reality. 

I find this perspective very interesting. We are still relatively early in the journey and I am happy to have stopped work. Of course, life does not stop for the other kids and their needs, for keeping my marriage going, for running a home, keeping some friendships going etc. I also wonder if we subliminally increase the (non logical) feeling of guilt in some kids when they see all we give up and makes them scared because then the must be really, really ill. Maybe a better balance actually helps them. (easier said than done, of course)

Quote:
Originally Posted by Sadmom
We all love our children. They, and all of us, have been dealt a very cruel hand, but unfortunately, there is no one sure-true method that works to get our kids well. I am glad we can discuss this truth openly and honestly.


I am really loving the way everyone is sharing on this thread. This must continue to be the strength of the forum. Open and honest, even controversial, discussions in order to help each individual and to progress the treatment of eating disorders.

Respect to everyone,
D

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid. Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. 

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] )

deenl

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Reply with quote  #36 
Hey Juno,

Thanks for posting

Quote:
Originally Posted by Juno
If I had to do it all over again, I would also choose this kinder, gentler version.  ...She was not as resistant as you experienced; she did eat but it took all of my energy and a huge toll on our family. My husband, son and I are still recovering.

It's great to hear your perspective. There are things I have done that I regret but I don't feel guilty. This balance feels healthy for me. I hope you feel the same because your d is doing better and that's the end goal.

Quote:
Originally Posted by Sadmom
It took a while for me to discover the phrase "how can I help you?" when she was shutting down or lashing out.

Golden tip! Thanks. Changes the whole atmosphere.

Thanks again,
D

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid. Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. 

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] )

deenl

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Reply with quote  #37 
Hi stepbystep,

Quote:
Originally Posted by StepbyStep
My d is in a relapse, been ongoing now since Sept/ Oct last year. It feels like 10 years. ... She is 17 in a couple of days time and has a strong character without an ED.

A relapse must be so difficult. I feel for you. My son too is pretty strong willed but we could always have lively debates, compromise and logic to get through to him. Ha, all out the window now ED has come to roost.

Quote:
Originally Posted by StepbyStep
I have been fluctuating between putting my foot down, showing fristration and giving orders to taking the foot off the throttle, watching over her and guiding but not forcing. Mostly it has been that over the last 6 weeks. She seems to have responded to that approach better and has slowly / very slowly/ been weight gaining. We still have a long way to go and our Psych and medical support has been patchy and at times not very helpful.

Ditto. This was exactly me a few months ago. Just trial and error to find something, anything that would work.

Quote:
Originally Posted by StepbyStep
It's all so exhausting. Thank you for sharing that a gentle approach can make a difference, I have to keep trusting that but also keep pushing if I feel she is incapable of making the right choices with regard to overall health. You are doing a fantastic job. Very well done. Keep at it. We are all rooting for you and your son.

Thanks so much for the kind wishes and sending them right back at you.

Hang in there,
D

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid. Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. 

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] )

deenl

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Reply with quote  #38 
Thanks for the reply ed_newbie. So glad to hear you are having success. I

Quote:
Originally Posted by ed_newbie
A disorder this complex requires customization in treatment approaches taking into account literally hundreds of variables. One size fits all just doesn't make sense.

That's it exactly. And the more we share the better chance we have of helping each other.

Quote:
Originally Posted by ed_newbie
No one is a failure on this forum. You're the bravest group of people I've ever had the pleasure of connecting with.

I definitely echo this. I'd be lost without it.

Warm wishes,
D

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid. Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. 

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] )

AUSSIEedfamily

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Reply with quote  #39 
Dear deenl,

Thanks for starting this thread. I have posted in the past about FBT & how it is viewed when its applied to the situations where the strict control by parents parts do not work.

So how then do you use it as set of ideas/principals & adapt it to suit what works for each individual situation.

I am often surprised by the use of the terminology of "Family Based Treatment" when talking about the manual written by James Lock, Daniel Le Grange, W. Stewart Agrass & Christopher Dare. In this book's title the authors actual state "A Family Based Approach" see attached pdf prints of the book's title.

My personal view is that where the total parental control works & works well then that's good. However as many here point out & the really good clinicians point out every ed has a whole lot that is the same & equally has a whole lot that is different & each case is different & needs a set of things that work for that case.

The one really common thing though is that regardless of the approach, method & style of what works the support/love/care/assistance of the family is truly the best medicine.

The wonderful thing about this forum is that parents cares can come here to share our experiences, ideas & thoughts to help everyone including ourselves.

Warm & Kind thoughts to you

 
Attached Files
pdf Lock_Le_Grange_Agrass_&_Dare_1.pdf (190.27 KB, 26 views)
pdf Lock_Le_Grange_Agrass_&_Dare_2.pdf (105.37 KB, 16 views)


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Colleen

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Reply with quote  #40 
Sorry if I added any confusion or worse, guilt, to this thread.  When I was talking about Magic Plate vs. LSUYE, I was only talking about definitions of terms, not whether or not they actually work for any given kid.  LSUYE is one type of Magic Plate.  "Magic Plate" is a more generic term, one that I'll try to use so that those for whom LSUYE doesn't work don't feel an additional measure of guilt or pressure.  Magic Plate can happen with other methods than just LSUYE, although that has been effective for many parents here.

For my own situation, I know some meals I needed to use LSUYE; other meals she ate without fuss; some meals I used other tactics; other meals she flatly refused no matter what I did.  It wasn't applying a specific technique on a kid-by-kid basis--it was trying whatever worked on a meal-by-meal basis with the same kid.  It was like a dance, or a mind-reading session--feeling out the temperature of the room and groping my way through to whatever got her to eat.  That's what I would call "Magic Plate."

The reason I was pondering this is because as PsychoMom pointed out, what deenl has been doing is exactly Magic Plate--finding what works for her child (hospital didn't; LSUYE didn't), and doing whatever it takes to get the food in.  That's what I would call "Magic Plate" too.

Back in the day, Laura Collins used to come on and remind us that words matter--that definitions matter.  For example:  An eating disorder is not the same as disordered eating.  Another example: The term "FBT" gets thrown around here to mean "parents in charge" (sometimes) or LSUYE (sometimes) or a DIY project of refeeding at home without support (sometimes).  In fact it's a manualized treatment protocol with specific guidelines.  The point is: it's important that when we use specific terms here, we all agree that we understand what they mean.  Laura is a professional writer and could make her point clearly and succinctly; alas, I'm not.  Whatever I meant, it was understood very differently than I intended.  The LAST thing I'd want to do is to make anyone here feel inadequate.

So I was just pointing out that I'm going to use Magic Plate from now on because it encompasses more broadly any technique that a parent can try, not just LSUYE.

I don't doubt that there are many kids who can't eat at home no matter how hard and how well the parents try.  I think the parents here are absolutely heroic.  ED is a beast of an illness, one that renders our usual good parenting skills useless.  It's not important in the long run if Magic Plate works at home or if the kid needs a higher level of care.  What matters is that parents continue to hold hope for their child.  I appreciate the kinds of terms that many families have had to accept, and I'm always humbled by the strength of parents' love.

__________________
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
deenl

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Reply with quote  #41 
Hi Colleen,

Thanks for chipping in.

Quote:
Originally Posted by Colleen
LSUYE is a fairly new term here, and I believe it was coined by YogurtParfait.  It's a good term and it describes a common tactic that parents have employed with a pretty good success rate.

And there is no doubt, in my mind anyway, that it is a tactic worth trying.

It does take some time
  1. to practice the SKILLS required to help your child eat and
  2. to find out which techniques work in your particular situation.
I do think we need to discuss a greater range of techniques for when something like LSUYE etc doesn't work.

Quote:
Originally Posted by Colleen
Magic Plate just means that the parents are in charge of the food--the food just appears magically!  It doesn't quite say "how" in the same way LSUYE does.  Your child may completely balk at LSUYE but might be able to eat with positive reinforcement, or allowing some limited choices, or with rewards, or by allowing you to spoon feed them.  It doesn't really matter HOW it happens--just that it does.  It's great if it happens at home, but it can happen in a hospital or treatment center too.  Food is medicine.  Plates are Magic.

This is what I think of when I think of 'Magic Plate' and I love the list of supports to try.

Again, I have no regrets about having tried it but the fact is in our case this did not work. Also, to repeat, we need to keep sharing about what alternatives people have tried then.

For us, we are not in charge of the food. Just. not. possible. When we did it, even with safe foods, he stopped eating totally (more than once!). The progression of medical interventions also did not work. We were left with the choice of trying to figure something out at home with him so sick that there was no margin for error or sedating him 24/7 in a severely malnourished state which was deemed so medically risky that it was only to be undertaken when he was literally dying.

For many weeks our son cooked for himself, this allowed him to find some stability and stop losing weight. I gradually started helping and then taking some things over. After 6 months we hospitalised him and I took over all the cooking and increased the calories without increasing the footprint. I am now encouraging flexibility of food items, one type of fruit for another, different flavours of soup and challenging ED 'rules'  like vegetarianism and any other little change I can think of. But the changes are still driven by him. He leaves notes when he is ready for chicken soup and now for beef noodle soup! Yeah! I do still occassionally plate up something different because just because that didn't work before doesn't mean it won't work now but still get refusal. Bummer.

This is so not typical 'Magic Plate' and yet our son is gaining .5kg per week and the treatment team can't believe it. They never thought we could manage it and thought he would be one of the kids who couldn't be helped. Never say never.

I have to say I am loving the diversity of discussion on this thread. This is our strength as a forum.

Thanks again,
D

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid. Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. 

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] )

deenl

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Posts: 743
Reply with quote  #42 
Hi Morgana,

Quote:
Originally Posted by Morgana
The only thing that worked for my d ultimately was ng tube feeds in ip with 1-1 observations and the threat of being sectioned and medicated or sent to a unit across the country and being sectioned and medicated there. 

This is the opposite of what works for us but this is the key; consider all options, keep searching until you find something that works and keep them (and us) going until we can make some progress.

Quote:
Originally Posted by Morgana
It's only now, at a higher bmi and closer to her target weight, she is becoming motivated by external factors such as having the tube out and being out of ip for summer, going back to school in Sept etc

Another important factor; flexibility. The plan needs constant tweeking depending on where you are alon the path. Things that have worked, stop working. Things that didn't work in the past may be just the solution for now.

Quote:
Originally Posted by Morgana
I know for some newbies reading things like ip, tube feeds, sectioning etc it can be scary and discouraging, but for those who need to go that route when magic plate at home doesn't work, it is important to know we as families have not failed. We are providing our very ill children with the higher level of care they need.

Their illness is not a reflection on us as parents or people.

I was indeed a bit overwhelmed when I first came on the forum but I've always preferred to know what may happen and be a bit prepared. That was the worst thing at the beginning, feeling totally clueless about the illness, treatments, what I could do, etc. Knowledge is power.

Hope you keep making those small steps forward,
D

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid. Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. 

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] )

deenl

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Reply with quote  #43 
Hi HateEDwithApassion (I always want to write 'Me too' when I type your name!)

Quote:
Originally Posted by HateEDwithApassion
If I didn't have that hope, that recovery could really happen regardless of the path used, well.. shoot. I'm not sure how I would keep doing this.

I think you've hit the nail on the head. You have to trust your instincts. If they are wrong, you'll learn quickly. We all make mistakes - me, many times over. Then you'll circle the wagon, and try a different approach. You know your D and it sounds as if you've got it figured out!


These are the essentials to family based care. We provide the hope, care, structure around the ill child or adult for that matter.

We are always capable of making some changes, no matter how small, in the direction of health.

Not that we can do it everyday. God knows, it's exhausing but I for one gotta keep trying but then again I'm still fresh in the fight.

Warm wishes,
D

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid. Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. 

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] )

Torie

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Reply with quote  #44 
Quote:
Originally Posted by deenl
For us, we are not in charge of the food. Just. not. possible.


If I'm understanding correctly, that's the crux of the matter. We start out with Ed in control of the food; we aim for a place where our Ed-kid is once again in control of the food ... but what happens on the way there? 

With MP/LSUYE, the parent wrests control from Ed so that the parent is (temporarily) the one in control of the food. Truly a nightmare process, but apparently the "best" experience we can hope for.

Sometimes I wonder if we need to borrow a page from the techniques people use with their ASD kids, whether our Ed-kids are also ASD or not. I know I've read a little about those techniques on other threads, but not sure where.

Is that worth considering?

-Torie

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

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Reply with quote  #45 
Quote:
Originally Posted by Torie
Sometimes I wonder if we need to borrow a page from the techniques people use with their ASD kids, whether our Ed-kids are also ASD or not. I know I've read a little about those techniques on other threads, but not sure where.

Is that worth considering?


Hi Torie,

I haven't read up on this. Do you have any links or suggested reading?

While I am not in control of eating, per se, I can control the whole environment around ED S, a great deal of the atmosphere, putting food on the table on a dependable schedule, leaving it there or reheating it at difficult meals, showing by serving 'extras' that I expect progress, talking about what normal is, ensuring he has healthy and productive occupation during the day, making sure friends still visit be they his or the brothers friends, being warm and affectionate, lots of things.

For us, these have been key in progress, focusing on what we can do.

Thanks for keeping the ideas flowing,
D

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid. Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. 

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] )

Sotired

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Posts: 1,862
Reply with quote  #46 
In terms of the ASD boys I know (as well as my own son I know five or six more well) they have food preferences but they don't stop eating.one of my friends sons can't have different food groups touching-my own ASD boy is like that now too as he has got older.so you either serve each food on a different plate or segregate each food group on the same plate.my boy will eat mixed veges all together but for some ASD kids that would be an impossible dream.some have extreme savoury tastes,others extreme sweet teeth. Many seem to love takeaways, though usually only one or two kinds.my boy is currently engaged in silent battle with me-he wants cheese pizza every day for lunch,I want him to have a chicken and cheese roll.so every day when I pick him up I removed the squished roll from his pockets and he has to eat it after school with me.and his carrots.sigh.one day a week he gets cheese pizza for lunch and I love that day because we only have to battle carrots after school...
None of what I did with smallboy was effective with my d.if we had removed her from the table until she calmed down like we do with him we could never have got her back there.
If other people have different experiences with their ASD kids, chime in.i can only write about the boys I know and freely admit it's a small sample!

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Sotired42
Torie

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Reply with quote  #47 
Quote:
Originally Posted by Sotired
In terms of the ASD boys I know ...


Thanks, Sotired - you know a bazillion times more about this than I do ... I just remember thinking when my d was at her worst that she was exhibiting some ASD traits and wondering ... wondering ...

My impression from the posts of others was that ASD kids have great difficulty with change, so maybe that would be something to keep in mind ... if you have to make changes with food/eating maybe try to keep everything else as same same as possible. Maybe ASD kids need to make changes more gradually. 

I don't know really - it's just something I wondered about. I've long had a suspicion that parents of kids on the spectrum have a bagful of tricks that could be put to good use by the rest of us during re-feeding if only we knew what you know. xx

-Torie

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

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Reply with quote  #48 
Hi again Colleen,

Quote:
Originally Posted by Colleen
Sorry if I added any confusion or worse, guilt, to this thread. 

As we often say, the written medium is very imperfect when we are talking about such emotional topics. I think we can keep being open and honest with each other, clear up misunderstandings quickly and know that each and every post is written the very best of intentions. No matter what.

Quote:
Originally Posted by Colleen
For my own situation, I know some meals I needed to use LSUYE; other meals she ate without fuss; some meals I used other tactics; other meals she flatly refused no matter what I did.  It wasn't applying a specific technique on a kid-by-kid basis--it was trying whatever worked on a meal-by-meal basis with the same kid.  It was like a dance, or a mind-reading session--feeling out the temperature of the room and groping my way through to whatever got her to eat.  That's what I would call "Magic Plate."

That's a great description for everyone! It is true that we need a whole box of tools for each kid and that different things work at different times.

Quote:
Originally Posted by Colleen
Back in the day, Laura Collins used to come on and remind us that words matter--that definitions matter.  For example:  An eating disorder is not the same as disordered eating.  Another example: The term "FBT" gets thrown around here to mean "parents in charge" (sometimes) or LSUYE (sometimes) or a DIY project of refeeding at home without support (sometimes).  In fact it's a manualized treatment protocol with specific guidelines.  The point is: it's important that when we use specific terms here, we all agree that we understand what they mean. 

The terms we use are a shorthand, the tip of the iceberg if you like. When we hear them there is  a bigger picture in our minds. Given the confusion this thread has caused, I went back and read the Hall of Fame posts on Magic Plate. This is a quote from the discussion and more in line with what I think of when I hear the term 'Magic Plate'

Quote:
"Magic plate" means that caregivers/parents make all decisions about food and nutrition until the sufferer is able to eat safely and appropriately herself.  You plan the meals and snacks, you do the shopping, you do the preparation, you decide the amounts, you put it on the plate and the sufferer must eat it.  As Zeri says, her only job in all this for now is to eat what you give her. 

I'm sorry if this just adds to the confusion/debate but our strength is in continuing to talk about what we mean about these terms and more specifically the techniques.

Quote:
Originally Posted by Colleen
I don't doubt that there are many kids who can't eat at home no matter how hard and how well the parents try.  I think the parents here are absolutely heroic.  ED is a beast of an illness, one that renders our usual good parenting skills useless.  It's not important in the long run if Magic Plate works at home or if the kid needs a higher level of care.  What matters is that parents continue to hold hope for their child.  I appreciate the kinds of terms that many families have had to accept, and I'm always humbled by the strength of parents' love.

This bears constant repeating until we have all internalised this and, while we may have regrets, they do not invoke strong feelings of failure or guilt. Well said Colleen, I agree 100%

Thanks again for taking the time to post on a difficult topic.

D

__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid. Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. 

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] )

deenl

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Posts: 743
Reply with quote  #49 
Hi toothfairy,

I just wanted to say a big thank you. I can only speak for myself but your warm support for everyone is very much appreciated.

Thanks again,
D

Quote:
Originally Posted by toothfairy
I have noticed it mentioned on the forum before, that ed could be a spectrum.
I believe it is from my experience to date.

Kudos to you all for your  strength,love and patience .

There is HOPE.
Very best wishes.

TF



I believe, our understanding and support for each other are so important for us, our ED kids and the rest of our families. I couldn't do without it.



__________________
Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid. Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. 

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] )

Sotired

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Posts: 1,862
Reply with quote  #50 
This has been an interesting thread for me!the most interesting thing in this situation for myself and my h is finding that our ASD son is less rigid than his sister!you can give him a reason or frankly just a directive and he will moan but do it.with my an d she seemed to get stuck in behaviour patterns and unable to change them in a positive way.
It's also weird to me that I can stay a lot calmer with smallboy than I can with my an d.i think it's because there's so much positive stuff I can do to help make his life better.with d....not so much...
Anyway, I hope all our responses have helped in some way.

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Sotired42
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