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aloha

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Reply with quote  #1 
D a 14yr old & we are tens months now with a.n. not w.r yet .
Any suggestions i can't watch d stand all day when at home
sits in school tho.
Says guilt won't let her sit down. It is disconcerting in a room when as family we are all sitting and she stands in the corner
mjkz

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Reply with quote  #2 
I used to tell my daughter three times to sit down and then we started supplementing to cover the calories she is burning standing up.  For my daughter it was part of her exercise compulsion.  If your daughter can sit in school, she can sit at home too.  I had to put time limits on everything and then adding calories to cover what the exercise was burning off (well more calories than she ever burned off but you know what I mean).  It is very disconcerting though.[frown]
Foodsupport_AUS

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Reply with quote  #3 
It is important to get her to sit down. As she has said herself it is her ED thoughts stopping her from sitting. 

Some ideas requiring her to sit will obviously meet with significant resistance, and the supplements are one option. I would suggest when getting her to sit that you work hard on distractions, for example crafts, playing a musical instrument, board games, writing stories/diary writing - anything that normally would be done sitting down. 

Starting with short period of times and gradually increasing them may be useful. 

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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
aloha

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Reply with quote  #4 
Thank you for replies
I'll keep asking but she is sooo headstrong.
Only consolation is weight up a bit today at meeting camhs
One day at A time.

A.
FaithKeepsMeGoing

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Reply with quote  #5 
This is pretty typical.  I would probably concentrate on getting food into her and stopping exercise that would hinder weight gain.  I like Foodsupport's suggestions for encouraging sitting more, but if it's going to become a battle, I'd focus my battle on the really big stuff right now.  The guilt about sitting may ease when she gets to a better weight, but hopefully you'll have fewer battles then and get firmer about this.
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The Irish tell the story of a man who arrives at the gates of Heaven and asks to be let in.  St. Peter says, “Of course. Show us your scars.”  But the man replies, “I have no scars.”   St. Peter shakes his head and says, “What a pity. Was there nothing worth fighting for?”

mamabear

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Reply with quote  #6 
Standing IS exercise that is fighting against you to get weight on. We went through this too. My D would " hover" over the toilet seat and when in a chair with her quads of steel.

We started by setting timers. The first time she had to sit it was three minutes long and she screamed and wept the entire time. I knelt in front of her and talked her through it. Consequence for that first time was not going out on a pass while inpatient. We gradually increased the timer. Butt on chair and feet on floor. As time went on she got " 3 strikes" ( reminder to sit) and then got ensure.

You used the word " ask". You don't " ask" her to sit, you REQUIRE her to sit. It will suck. ED will fight... but once this habit is broken your true d will be relieved. My D told me several months after we required her to stop standing that it was so great and such a relief because her hips and knees were very painful from standing all the time .

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aloha

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Reply with quote  #7 

thanks to all for your advice,
i would say here knees and lower back are killing her, but she will not give in.

everyday she feels guilty even sitting for brief time on the loo.

no more asking - i am going to "time" her to try and break this cycle - her feet are hovering off the floor while i drive the car, it is so disconcerting

what has this illness done to my little lady.

thanks all for help

A.[thumb]

 

Torie

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Reply with quote  #8 
Quote:
Originally Posted by aloha
no more asking - i am going to "time" her to try and break this cycle


That's the spirit!!!  Kick Ed's butt. xx

-Torie

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

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Reply with quote  #9 
Hi,
Why is it taking so long to get to wr and what can we do to help you speed the process? A gain of 1-2 pounds a week is often a doable goal; if this isn't happening, many on here will have useful, concrete suggestions to help you make it happen. Rapid weight restoration is the best predictor of lasting return to health, and really the only way to ease your d's suffering.

I don't ask you this to find fault at all, but as a way to encourage you that there is likely a way to get through what I know is a hideous situation more quickly. Resolving to require, not ask, is a critical step; good job!

best wishes,



__________________
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
aloha

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Reply with quote  #10 
Oh I welcome all suggestions on how to weight restore quicker
We seem to see saw up and down fierce but up A bit this week.
Thank u all for the encouragement it helps so much .
A.
mjkz

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Reply with quote  #11 
Quote:
I'll keep asking but she is sooo headstrong.


Aloha, my daughter will tell you the sky is green if you say it is blue just to argue.  She is so darn stubborn and headstrong.  She always takes the opposite of what I say or do.  I think that is just the nature of the beast and can end up being a good thing if she can turn it so she is using the stubbornness against the ED.

What makes her able to sit in school VS at home?  If she is able to sit at school, sitting at home shouldn't be an issue.  I would suspect the teacher doesn't ask her but she knows it is required.  Sitting is just as required at home.  Time to pull out the teacher voice and face!!
mamabear

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Reply with quote  #12 
Just something to pay attention to and maybe ask...

Is she really sitting at school?
My daughter could " look" like she was sitting but she was still hovering over her chair. I'm serious. Or she would squat in the chair under the desk. Always activating her abdominal muscles. I asked her teacher to pay attention once in awhile. I asked her to report to me. My D was doing all of those things AND getting up to sharpen her pencil constantly. We came up with a secret thing where her teacher would pull on her ear to remind my D to sit on her butt. Three reminders and I got a call. Then she had to have ensure and come home. She also " got" to use a pen.

Is your daughter truly well enough to be in school? Would it be easier to enforce sitting and eating if you could all focus on weight gain and behaviors? I know it's hardcore. My daughter had a very severe OCD rituals exercise compulsion. It is scary and hard work to face down this beast. But it's the only way out.

You CAN do this. " Require" is your new word. Food is her medicine.Exercise is her cancer right now. I remember that moment I really realized the sheer MISERY my child was in moving all of the time. I realized that it was torturing her and trying to kill her and it was war.


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aloha

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Reply with quote  #13 
Hello
Feet on the ground but still very upset about the target weight.
So much so that I feel she should hold off meeting friends for meal sat as not able and restricting before going.
Standing tonight but I'm exhausted from asking and lost my mojo to keep going
My best
A. X
momon

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Reply with quote  #14 
Hi Aloha

Everyone falls down sometimes at what they are working on, but it sounds like you are getting the plan. The plan is you are the boss, ED is the enemy, and you are going to require that your daughter do what she has to do so ED can be sent packing. And always remember that you are saving her form the misery of what ED is making her do, even though at this time she expresses that you are making her feel worse.

We did not have exercise compulsion like you did, but mamabear has a boatload of experience at successful treatment of the same thing. I recall reading some detailed descriptions in her posts of how she beat it so you might look at her older posts for inspiration when you are tired. If you can't do it tonight, it will inspire you to be back at it tomorrow!

ideas on gain: You are going to get control of her covert exercising.  Also, use the high cal food thread on here, and plan your meals off that. Always work to get more into her than you got at the last meal. Then try to never go backward in amount. 


You can do this and she wants you to do it though she can't tell you!
K63

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Reply with quote  #15 
Hi Aloha, I understand how difficult it is for you to watch your d stand. My d did this when she was unwell . She stood or walked around in the living room. In summer time walked around outside while reading her book. She also did it while ip and it took some time to stop it. While at home I used to say it wasn't normal behaviour and sometimes she would leave the room. My other d could not stay in the same room if she was standing up or walking around and she would call her on it. She would also be constantly be gigging her foot and would never sit in the car before me. Thankfully these behaviours are almost gone but if she loses weight the standing seems to return so it's an alert sign of weight loss. It seemed to settle with nutrition and weight gain.
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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. 
hopeful_mum

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Reply with quote  #16 
Hi Aloha, my d also used to eerily stand all of her waking hours. Her feet were cold, grey, cracked n swollen but she still just stood even when doing her school work! (She wasnt able to attend school at this stage). I had no guidance or information on how to deal with it but it was immediately broken when by the IP unit who operated sitting programmes and full ban on exercise/hidden exercise. Youve been given some great advice here to follow which I hope you will find useful. Since these days I have also heard that it can be painful to sit when you are so underweight. Im sure the exercise compulsion is probably at the forefront of this but comfort may also be a factor. Providing extra cushions/hot water bottles could maybe at least increase the comfort if it is.
Keep going. Youre doing a great job and these days will pass with increased weight gain.
aloha

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Reply with quote  #17 
Your encouraging advice is brillant I will keep going with it.
Tonight but challenge as meeting friends and wished to skip lunch as they will be eating elsewhere
I'm so suspicious of this.
E.d very sneaky thing....
Thank you all.
A.
mjkz

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Reply with quote  #18 
Quote:
Standing tonight but I'm exhausted from asking and lost my mojo to keep going


I'll be blunt.  Stop asking.  It really does no good to ask because her ED is not going to let her.  You have a very confused frightened kid who really wants to sit down but can't do it on her own.  She needs to sit so you require her too.  My guess is she really wants to sit but can't do it on her own so she needs someone to make her sit.

Sorry if that is too blunt but asking her to do something she can't really just prolongs the distress in the long run. Require her to sit and while the distress may spike in the short run, you are really doing her a favor especially if she is hurting herself by standing!!  My daughter ended up with tendinitis in one foot and the other knee from standing and exercising.  She really did some serious physical damage and I didn't really realize it until it was already done.  After I required her to sit and stop exercising, she actually thanked me because she was not able to do it on her own.
aloha

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Reply with quote  #19 
Thanks mjkz
I'm not asking...
I try so hard to be patient but after a while I am weak maybe she is bettering me and will shout loudly
It is making me unwell I think I have a stomach ulcer
Thanks a mill for advice need all help I can get.on Ireland has poor services.
A
K63

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Reply with quote  #20 
Hi Aloha, we are in ireland and services are so bad. Hope you are able to get some time for yourself it's necessary to get through this awful time. When my d became ill and people used to say take care of yourself it used to drive me crazy I felt how can I went I need to be with my d . After some time I realised I needed to have breaks from this awful illness and I found going for coffee with close friends who I could talk to or going for walks or something I enjoyed was what actually got me through theses last few years .
It's difficult to see our children suffering like this and we want as mothers and parents to fix it. Take care of yourself this is such a stressful time try to get to see your GP to check in case you have an ulcer.

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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  #21 
Aloha I have yet to find a place that has great ED services!!  That is why it is even more important to break these habits when you don't have a choice of a higher level of care.

I always gave my daughter a choice.  She could sit in a chair or lay on the coach/floor, etc.  If she tried to keep standing, she got three warnings and then we started supplementing with Ensure, Fortisip probably there to replace the calories she was burning by standing up.  We started with a quarter of a can.  There were times when she would end up drinking a full can in the course of an evening (that was by far her worst night).  Yes, she may cry or shout.  She will try to outlast you.  ED is like that. You just have to keep the end goal in sight and block out the stuff that happens in the meantime.
aloha

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Reply with quote  #22 
Dear mjkz
I'm persisting but not gaining any ground with it.
Will keep going but shattered from it all.
It's very difficult to watch we are also lacking support in particular from my family which is soul destroying.
Not sure people get e.d at all to be honest
Thanks for support
A.
aloha

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Reply with quote  #23 
Shouted at and you name it i got it in the jugular for telling her to sit down .reading other posts I have ptsd for definate.
Every threat was given but no avail I'm losing this battle
mjkz

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Reply with quote  #24 
Aloha, what kind of consequences happen if she doesn't sit down?  What happens when you require her to sit?  If she can do it at school, she can certainly do it at home.  What happens after you warn her about sitting?  Have you tried supplements or required her to eat an extra snack to replace the burned calories?  I know it can be soul shattering to have to keep repeating the same thing and getting shouted at but if your kid was running into the road and standing in the middle with a car coming towards her, would you get her out of the way even though she yelled that she wanted to stand there anyway?  Of course you wouldn't and the same thing here.  Every time she stands and tries to wear you down, the ED is what you are dealing with.  Maybe we can help brainstorm some strategies with you if you let us know what is happening.  A lot of us here have had to deal with this.
Goingtobeatthis_AUS

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Reply with quote  #25 
Dear Aloha

You sound exhausted and traumatised with good reason and sometimes it is soooo hard to problem solve solutions when feeling like that - what are you doing for you, your mental health and well-being. So challenging but i found i could always cope, remain calm, persist when I had some nourishment of me. This can be simple e.g. music, walk, whatever floats your boat but necessary. Getting some head space will allow you to find the resolve to tackle this ED behaviour

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Belinda Caldwell FEAST Executive Director. D 21 now well into recovery after developing AN in 2011. Inpatient 5 weeks, FBT and then just lots of time, love and vigilance.
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