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K63

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Reply with quote  #51 
Hi , in the early days when my d started loosing weight and we took her to the GP we got no guidance . We knew we were in trouble before we got a diagnosis from a psychiatrist. We tried what I didn't know then was magic plate but she resisted . I tried life stops till you eat but in those early days nothing worked. The psychiatrist thought the fear of being hospitalised and not being able to go to school would work but how wrong he was . Eventually she needed to be hospitalised. After discharge magic plate still didn't work for a few weeks and she lost some weight. We are now being successful using magic plate but but still at 19 two years after diagnosis one year post discharge needs supervision with meals.
The team were very anxious for my d to commence olanzapine while in ip but point blankly refused.

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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
mjkz

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Reply with quote  #52 
Quote:
What strikes me is that so many of the things that work for you and your family are not at all easy or in parenting fasion these days.


No, they are not and there are times when I hesitate to post the things we have tried because they seem heartless or not in fashion.  When you have tried everything that the books or the professionals tell you to do and you still faced a skeleton who is adamant that a mouthful of food will make the world end, you start doing what you have to in order to keep her alive.  I hate not spending a lot of time with her when she is in the hospital but time and time again through more admissions than I care to count anymore I have seen how that just makes her comfortable inpatient in the controlled environment and she has no motivation to leave or get any better.  None of this is ever easy.  Every time I have to leave her in someone else's hands because she stopped eating again, I walk away feeling like I have failed in some way.  Then again when I had a kid who was at 45% of her ideal body weight and no one would admit her because she was so low in weight, that was hardly a success either.

You do what you have to in order to keep them alive.
bks76

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Reply with quote  #53 
Deenl,

I want to thank you for your detailed sharing of what is working for your son. You are brave beyond belief, and it's really amazing that even in such a difficult situation you have created a path forward. I admire your courage and your ability to control the parts you can indeed control.

While my son is not a super resistor at all, I still find a tremendous amount of value in your approach to focus on the calm, loving, supportive environment. By focusing on what we can control, our own emotional responses not just to ED but to all "normal" stress, we can make positive changes that help our children heal. This is so hard, of course, but very powerful! When I'm feeling my emotions getting out of control I do think of you, and the bubble of calmness you have created in your home. Thank you!
deenl

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Reply with quote  #54 
Here is something else we try. Adding calories to his safe foods anywhere and everywhere we can.

http://www.aroundthedinnertable.org/post/show_single_post?pid=1292467420&postcount=11&forum=136439#gsc.tab=0

Warm wishes,
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] )

Morgana

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Reply with quote  #55 
Unfortunately my d eventually resisted even with a calm loving environment at home.

Like k63, we thought the threat/very real consequence of missing school and being hospitalised would motivate her, and it probably did for a while but eventually the ED takes everything. It is so sad, and so difficult to watch your child give up absolutely everything for this vile illness.

I just want to reiterate that the absolute most important thing we can do for our children is ensure they gain weight. Doesn't matter how, or where, the only hope is weight gain. So if they need to be hospitalised, sectioned, tube fed, medicated, we need to accept that. It is hard, I know (literally, I do know, troll my history!), to accept we can't always do it at home. But sometimes part of looking after them is ensuring they are in the best place for treatment.

__________________
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.
deenl

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Reply with quote  #56 
HI Morgana,

Thanks for helping us keep it real.

Quote:
Originally Posted by Morgana
I just want to reiterate that the absolute most important thing we can do for our children is ensure they gain weight. Doesn't matter how, or where, the only hope is weight gain. So if they need to be hospitalised, sectioned, tube fed, medicated, we need to accept that. It is hard, I know (literally, I do know, troll my history!), to accept we can't always do it at home. But sometimes part of looking after them is ensuring they are in the best place for treatment.


Amen.

Unfortunately, my son who was only 60% what he should have been based on history and with a BMI of 11 was allowed to lose a further 2kgs in the 5.5 weeks IP. So, in spite of all the very serious risks and the very real danger he was in, home has been the best place for treatment. But good professional treatment would have been preferable.

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] )

Morgana

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Reply with quote  #57 
Deenl my heart breaks for you and your precious son. It's obvious that your home is the best place for him, I am so sorry you had such a terrible experience of ip. As if it's not hard enough! I feel so lucky that the unit my d is in is a good one. They have problems and are not perfect, and d did lose weight in there before they passed the ng tube, but I have never felt she was unsafe there.

You are doing an amazing job!

__________________
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.
deenl

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Reply with quote  #58 
Hi again, everyone.

It seems that, as usual, someone, somewhere on this forum has struggled with the same things we do.

Here is a link to a previous thread http://www.aroundthedinnertable.org/post/modified-fbtmaudsley-for-cases-not-responding-to-by-the-book-treatment-6167821?highlight=modified&trail=25

I love the fact that we are all so creative and determined to find a path so keep posting what has worked for you as I always need new ideas!

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  #59 
How are things going, Deenl?

Thinking of you. 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  #60 
Hi Torie,

How sweet of you to think of us. We have been having a bit of a mixed time. Had a loss of .5kg two weeks ago but gain. 7kg this week.

I am a little unsettled this week around things with the treatment team. We have a family systems therapist who's brief is to support H and I to support ED S. On Tuesday she said she is getting questions about why she is not sitting around the table with the whole family doing some sort of 'family therapy'. Point one who is putting her under pressure and point two what would be the goals of such therapy? We already had one therapist ask S1 and S3, in front of ED S2, why they thought he got an eating disorder. I butted in and said 'genetics and negative energy balance'; other issues like difficult school situation, social anxiety, OCD, trauma, a diet, sport, illness, a sponsored fast etc are so personal to each person that they cannot be labeled a 'cause', just the trigger for the reduced appetite. My third point is how do they think that getting 4 boys/men (2 very introverted and private, 1 other who hates talking about feelings and 1 chatterbox) and chatterbox mom to talk about things is going to help ED S gain weight.
 
I love our pediatrician but I am a bit disappointed in her at the moment. She keeps telling me that weight gain of .5kg a week is fantastic. S left IP at 59% of his place on historic weight curve and is now 70% of ideal weight. Hello!!!? In the last 4 weeks he has only gained 0,2kg and it has taken 7 weeks to gain the last kilo. Remember S should be about 14kg heavier RIGHT NOW. At a rate of a half kilo a week he will be at todays right weight in 6 months or so at which stage he would need 4 more kilos, not to mention the 15cm of growth we have to fuel and full puberty which has never started. Nobody in the flipping treatment team can answer my question 'How do I get him to eat MORE?' 'How do we help him with his fear while we do it in a way that he keeps eating?' And the standard FBT techniques cause him to stop eating (but I am still tweaking what I can). 
 
The team is also putting pressure on to get him back to school or a day centre. Again, hello? He can't eat anywhere else except at one place in our home, with his iPad and a very specific order of gaming/youTube. He cannot eat one single bite more so how does she expect him to fuel extra movement and the extra calories he would burn with stress and socialising? I think her idea is that he would be motivated to eat more if he had something like that. Well, I know my kid, it would not work.

I also had a meeting with the treatment co-ordinator who started going on about what 'recovery' means to S and that we have to find something to motivate him to get better. I told them I thought he was too sick at the moment and we would be motivated for him.

In fairness to them he refuses to say a word to any of them ever. So all their CBT and day treatment etc is useless as he can't engage. But it frustrates the hell out of me that they have no ideas other than 'treatment as usual' 

On the other hand, he eats his regular amount come hell or high water. Since Feb he has very rarely missed a meal. Even when he is upset if I just give him some room and time he will come for the meal although it may be 20/30 mins late. I am truly grateful for this; he is an amazing kid really.

So after that whole rant, I guess I am back to what I always knew deep down; it's up to me and my husband, supported by my mum and a couple of special friends, books and you guys, of course.

I am setting up my treatment facility for one. I was thinking though, I always feel stronger when I trust myself and trust that I know my kid and what will work better than 'experts'

The first step is to focus and define my treatment goals;
  1. Focus on weight restoration as soon as possible as a priority
  2. Normalise eating habits
  3. Coach social and emotional issues as they arise
  4. Tincture of time
  5. See what's left
Things that would be nice alongside are fun, school or day centre, safe environment, outings, friends. But only if they do not interfere with the priority of weight restoration.

Thanks as always for giving me the space to think aloud.

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] )

mjkz

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Reply with quote  #61 
Quote:
Nobody in the flipping treatment team can answer my question 'How do I get him to eat MORE?' 'How do we help him with his fear while we do it in a way that he keeps eating?' And the standard FBT techniques cause him to stop eating (but I am still tweaking what I can).


Have you given anymore thought to getting him into a treatment program that can help you do this?  I would be upset too if my pediatrician was happy with that amount of weight gain.  At a certain point you just have to get them to eat more because the longer lasting effects of being that underweight start outweighing keeping him in his comfort zone.  I think your team is really struggling to find a way to help and suggesting things that might enable him to push past where he is now.  For my daughter who got down to around 45% of her ideal body weight, we couldn't wait for her to feel comfortable eating more.  It took six months of sedation with tube feeding and TPN plus close to 60 pounds before she could eat more.  She was having a lot of GI problems hence the TPN. She too was eating her usual amount and ate it every day but just continued to lose until it was life or death. She had to go out of country to be treated because the one hospital in the US that would take people as low weight as she was had a waiting list.

I don't know what is going to work for your son but I can't see how you will ever get ahead of his growth and puberty where you are at now.  I wish I had some answers but I know had I waited for my daughter to overcome her fears in a way that kept her eating and kept trying to get her to eat more she would be dead.  We couldn't wait any longer.  I know he is against meds but maybe getting him to treatment in a country where you make some of those decisions would help.
Kali

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Reply with quote  #62 
Hi Deenl,

"Nobody in the flipping treatment team can answer my question 'How do I get him to eat MORE?'"

Maybe there are some other ways to increase his calories. It is wonderful progress that he IS eating and frustrating for you that you cannot get him to gain weight faster...have you considered ordering some benecalorie? 

1.5 oz has 330 calories. Supposedly it has no taste and can be mixed easily with food. Maybe you could experiment by mixing in enough to add 1000 calories a day to his diet in addition to what he is eating now, and see if it makes any difference after a couple of weeks?

It can be ordered online. 3500 calories equals one lb of weight gain—so if you can mix in 7000 calories a week extra for him, that will be a 2lb a week additional weight gain plus what you are managing now, which would be excellent. Usually in treatment centers they try for 2 3/4 lbs a week weight gain and this could bring you up to that level.

Another option is to have him drink an ensure or boost between each meal, 3 a day. But if he will not agree to this, hiding the benecalorie in his food could work also.

Wishing you well,

Kali






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Food=Love
deenl

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Reply with quote  #63 
Thanks for the support and tips guys.

We are in Europe so the brands etc a a bit different. I use Nutridrink Powder, Neutral flavour but it does still have a flavour so I can only add small amounts but I add it to everything. I also add Nutridrink protein powder and full fat milk powder to everything I can. 

I would give benecalorie a try but it seems to be very difficult to find in Europe (at a do-able price). Anyone any experience?

Cheers,
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] )

JustFlippinEatItNZ

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Reply with quote  #64 
Just adding my agreement that FBT doesn't work for everyone and defs didn't work for us - nothing I did could make her eat. 

As well as not working, it definitely made things worse in the long run. She still won't talk to me much or let me help her even 2 years later, and she can't wait to leave home so no-one can supervise what she eats. Although...without attempting it we wouldn't have got to the point of her (over 6 weeks) starving herself back into hospital, which she needed. 

The version of FBT offered by public services here may have been part of the problem - if they'd worked with us on it rather than just quoting from the manual exactly how it had to be done, things might have been different. We had a very inexperienced therapist. If they'd been willing to step in and back us up when it wasn't working, or refer her for some inpatient feeding when it became obvious that we couldn't get enough food into her there might have been an different outcome, too. 

It seems that FBT and magic plate are also often treated as synonymous to 'making your child eat'. What happens when you give it all you've got and you still can't get enough nutrition into them needs more attention and research.

Anyway - complaining won't help. I wish I had some suggestions to share, but actually it was kicking her out of home when I got to the end of my tether (because she was refusing all treatment - and the services were happy to let her!!!) that finally made her start eating and gain weight - she did it to spite me but that's fine by me - at least she did it! Isn't out of the woods yet, still very messed up, but almost weight restored for the first time in a few years.

So for us it's a bit of tough love, as well as:
  • buying a ton of yoghurt since it's almost her whole diet,
  • not looking at or commenting on what she eats,
  • accidentally-on-purpose making tempting food and leaving it on the bench in case she accidentally sneaks a bite out of it,
  • trying to treat her like a normal kid - hassling her to clean up her room, do her homework etc - although as long as she gets better I don't care about the rest!
  • sussing out what motivates her - money, going to the school ball, leaving home - and trying to tag things like staying in therapy to them
  • staying calm, consistent, trying to keep loving her when she drives me up the wall
  • sneaking motivational notes onto her pillow
  • telling her I love her even though she doesn't believe me and says she hates me 
  • trying to spot some things to tell her she's good at - although I can't do it outright or she won't believe it - I need to use the idea someone gave above and accidentally-on-purpose let her catch me telling someone else how good she is at ....

Hope something her helps someone!

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17yo D, AN since Sept 2014. BMI 19.
Onward and upward - a gram at a time.
deenl

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Reply with quote  #65 
Hi JustFlippinEatItNZ,

I love the way you keep a calm atmosphere and love her, no matter what. And the way you don't go along with the ED by leaving out food on the assumption that she'll eat some (maybe). If I don't keep my expectations high what message do I send to my kid. But that one is a balancing act of having high expectations without unrealistic hopes, otherwise I myself would be emotional wreck!

There is a real dichotomy between evidence based treatment which follows reasonably closely on manualised protocols and the ability of a therapist to use a very wide range of tools if their patient is one for whom the standard treatment does not work. Unfortunately for us, our treatment team seem to have very little creativity and talk the talk but can't walk the walk when it comes to figuring what to do with a difficult patient. Luckily, I am creative and determined enough to keep plugging away. Grin.

Wishing you some more steps in the right direction (a miracle cure thrown in would be nice too!)
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  #66 
Some of these eBay sellers say they ship Benecalorie to UK and show free shipping, but not sure if you would actually get the free shipping if you put in a UK address - sorry if you already tried this and it doesn't work ...

http://www.ebay.co.uk/sch/i.html?_from=R40&_sacat=0&_nkw=benecalorie&_sop=15

-Torie

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

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Reply with quote  #67 

I want to adress this post to Sadmom:

Dear Sadmom,

I was through all your posts, since I found some similarities in what happened to you and to me concerning  our fight for our D’s. English is not my first language, so I’ll try to explain situation using some of your phrases:

1. Other people had good professional help, when we have only had damaging crap, we as a parents were discredited, or worse, our D is indoctrinated about how little their parents know about treatment because "they aren't doctors."  D liked this T very much, they never discussed weight issues.

2. Evidenced-based methods failed with her.

3. Other people could use leverage on their kids to get them to comply, but that just made our daughter run away from home and not not speak to me for many, many months. Leverage failed.

Luckily your D is doing fine at the moment, but you mentioned in your Post from May 5th that your D has her non-campus doctor and therapist, so that you know that if she started to slip, they would catch it immediately. Who are these proffesionals, how important are they to her, did they cut you off. At the moment our D dropped out of her treatment program from respectfull ED clinic where we tranferred her after the break from Trauma Therapiest and has lived on her own since and I am affraid that she can not get better if no proffesional help.

 

God bless you and your D, all suffers from this evel illness,

Thank you so much for your advice in advance,


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As the time is passing by, we are running out of options
Sadmom

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Reply with quote  #68 
I am so sorry you are having a tough time One-day-at-a-time.  My daughter still sees a therapist and doctor every other week and I do not know how important they are at this point. My D's weight is good and she is busy and active in school and work, though she is still a bit surly to me. I credit her better weight and somewhat better mood towards me (at least she isn't screaming!) to a supportive boyfriend and something to live for (i.e. school and a plan for her future).  

With my daughter, my constant intervention and pushing for more intensive help did not result in anything positive; it just destroyed our relationship, literally. Other people's kids are different. From reading on this forum, my experience does not match a lot of people's at all, in that nothing I tried worked, and yet my D is getting better anyway. We still have a long way to go to repair our fractured relationship, but because her health is better, I figure I can patiently wait for the relationship to improve, which is happening, baby steps at a time.

I guess my only advice, from my limited personal anecdotal experience, is to try to engage your daughter, not tell her what to do (failure for mine; works for others). Try to find what is worth living for and support her financially in reaching her goals (again, the exact opposite response to what others will tell you). There is no way out of this disease without the sufferer finding hope, and I found that out the very hard way.

Best of luck to you. My heart bleeds for anyone enduring difficulty with a resistant YA.

Edited to add: our treatment providers have uniformly left me out and given my D the impression that I am to blame and that she should just ignore me (they would say they did not tell her this, but I had a very different child before all these people began mucking with her mind). And they have said horrendous things to me in her presence. 

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Sadmom
hopeful22

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Reply with quote  #69 
I am new this forum today and have gained a lot from reading your experiences. My D is WR, but she has relapsed this week. Whenever I push she completely shuts down. I try to stay consistent, but I lose my will and have given in. I don't know if that has led to her relapse or what I could do differently. When I take things away, she says there is not point to eating because there is nothing to live for. I try to let her do as much as possible to be around "normal" kids, but I think I might be making a mistake. She just started calorie restricting again this week and she had planned a sleep over tonight with a good friend. I decided to let her go, because punishments have never worked. Is that a big mistake?
One_day_at_the_time

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Reply with quote  #70 

Thank you Sadmom for your prompt answer,

I will transfer my further questions to You Sadmom to my thread which is “Once more motivating the desire for welness from scratch”, cos it's more private conversation between You who are giving me hope and me,

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As the time is passing by, we are running out of options
Sotired

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Reply with quote  #71 
Hi hopeful22
This is too late to help your dilemma but I just wanted to say welcome.in terms of whether or not you made the right decision,the answer probably lies in whether leverage works for her usually.if it doesn't then its more finding the things that motivate wellness.
For us we had to use hospital over and over during the time we had control over treatment.sometimes with super resistors that's what it takes.everyone on this thread has tried different things at different times,and sometimes that's what it takes-the ability to change direction quickly if what was working isn't working anymore.it changes with age too.
If you have more questions or just want to touch base with others you can start your own thread if you would like to.simply go to the top of the page and click the topic button.enter a thread title ,then just ask away!

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Sotired42
deenl

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Reply with quote  #72 
Hi hopeful22 and welcome,

It's great that you found the forum. I found the learning curve to be steep but reading all the various experiences here has helped me to help my son.

I agree wholeheartedly with sotired. There is no one size fits all but information is power as is parental love, determination and flexibility.

Maybe you could start your own thread as sotired said. You could let us know your daughter's age, a brief history, roughly where in the world you are and how your d got weight restored before. Then people who have a similar story will be able to share their experiences. Did your daughter have a treatment team that you can get back in touch with?

Quote:
Originally Posted by hopeful22
Is that a big mistake?

You can never know until you try one way or the other. We like to say here on the forum that there is no failure, just feedback. If something works, yeah [thumb], if not, try something new.

Keep reading, keep learning and ask any questions you like.

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] )

hopeful22

Caregiver
Registered:
Posts: 23
Reply with quote  #73 
Hi Sotired & D,

Thanks so much for responding. I'm not sure how to start a new thread, but will try to figure it out. I am really struggling this time. We did FBT for my daughter to get her back to her proper weight and it seemed to go well. She was acting almost normal for weeks, but is calorie restricting again. I now know that my expectations, or hopes, that when she started acting normally, my work was done. I know that isn't true, but just wanted this to be behind us. Now I am falling apart. I am so frightened with having to face ED again. I think I let her sleep at her friends because I just couldn't do it last night. I am dreading the summer of endless days of worrying about every meal. I can't bear the thought of going to the grocery store and cooking. The irony is that I feel too sick to eat, my stomach is constantly in knots. I feel like I am on the verge of tears all day long. I can't concentrate at work. I kept it together before, but I don't know if I can muster the strength again. How do you all do this? It is so very hard. watching her suffer is killing all of us.

Thank you for you kind words of welcome to the forum. You all sound like such strong.amazing parents.

Hopeful22
deenl

Moderator
Registered:
Posts: 771
Reply with quote  #74 
Hi hopeful22,

To start a new thread go to the Main Discussion Board and click on the 'New Topic' tab on the top right of the screen.

A couple of things come immediately to mind:
  1. Brain healing after restricting takes 6-12 months after weight restoration
  2. Was the weight target in fact a good target? Here is a link to give you more information https://www.kartiniclinic.com/blog/post/determining-ideal-body-weight/# Also young adults need to continue gaining weight into the mid twenties. It's a moving target.
  3. Has your daughter grown? In which case the initial weight is out of date. Many parents have noticed an uptick in eating disordered behaviours for pints 2 & 3
You are tired. We. Get. It. Believe me, we all know how demanding refeeding a kid is. It's like the fog of the baby years all over again. You have won the battle but you have not yet won the war. But, ya know, you have all the skills, you've done it before (I can't/couldn't). You need a (little) time to take a deep breath, find your love for your daughter, find your courage and reserves, contact the treatment team, muster up the rest of the troops (hubbie?, family,friends; for housekeeping, shopping, cooking, babysitting; be specific) and get right back into the war. You CAN maintain the huge progress you have made to date.

Wishing you strength and courage,
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] )

hopeful22

Caregiver
Registered:
Posts: 23
Reply with quote  #75 
Hi D,

Thanks so much for your reply! She will be home for dinner tonight and I am dreading what I may face. Your encouragement is really helping me. Thanks so very much. I find that eating at home is really hard for us. She continually asks what we are having and builds up her anxiety. It is a bit easier to eat out, but it is tricky for her ordering because she always goes for a salad of some kind. I've been allowing it is the salad has a lot of protein. Does anyone have any ideas about eating out?. How does this work for you?

Thanks for all of your kindness.

Best,
Hopeful22
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