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scaredmom

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Reply with quote  #1 

Hi everyone,
This is my first post. D age 12, AN.hospitalized for 3.5 weeks. Now at home for last two weeks.  Did not gain last Thursday - the social worker, pediatrician and the dietitian all said that " Parents know best how to feed you- and yes there may be more food over time- sometimes extra food or snacks" So to that I added only 250-500 cal per day. She is fighting it- tooth and nail!

I know ED in her head is not rational.... she is now arguing that "she cannot trust" me, suspicious of every meal, trying to negotiate etc... I know others have gone through this, but I am really scared it will not change.  She is hitting me.. by surprise- I did not see it coming- when she is so fearful she hits and throws the food and broken many dishes. Husband takes her away... I feel guilty for being so angry at what she is doing. I don't see that lovely girl anymore, just a monster. I am so  sad.
Has anyone else been through this or does your child/loved one just fight verbally. When we wait her out over one hour she does relent. But tonight she felt I added in the snacks and supper... now saying she won't eat snack tonight.
So desperate, right now.

thanks




AUSSIEedfamily

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Reply with quote  #2 
Dear scaredmom,

Yes many here have experienced what you are experiencing.

Food is what they are afraid of and the ed noise inside of thier head is beating them up when they eat.

Read up on the refeeding posts here. There will soon be someone with more experience with refeeding posting here to give you some ideas.


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Kali

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Reply with quote  #3 
Dear scaredmom,

I am so sorry you have to join us here but you have come to a good place to get information and support from parents who have been in the trenches and have fought this illness. Others will be along to welcome you and give you tips and support. Visit the eating disorders learning center at http://www.feast-ed.org/?page=LearningCenter; there is a lot of information available there.

First: this is a biologically based brain illness and recovery is possible. It might take time and it might be very difficult, but parents can help support their children and children can get well again.

Second: Your daughter did not choose this illness and your family did not in any way cause it.

Third: It helps to learn about the illness and be armed with knowledge. Here are some books which I found helpful:

Help Your Teenager Beat an Eating Disorder by James Lock and Daniel Legrange
Anorexia and Other Eating Disorders by Eva Musby

Here is a link to some videos by Eva Musby which discuss how to get your child to eat.



Brave Girl Eating: A Families Struggle with Anorexia by Harriet Brown
Eating with Your Anorexic by Laura Collins

Fourth: One way to help refeed your daughter and help her to gain weight is to add calories by adding heavy cream and canola oil to her food. There is a thread called High Calorie Suggestions which you can search for which I hope can give you some ideas about how to prepare the sort of food that will help your d. weight restore.

For your situation right now I would advise trying to stay calm. I know it is a nightmare and very difficult because I have been there. 
Does your daughter have a "safe" food that she WILL eat at the moment?
For my d. it was cheerios. 
If you can think of a food like that, can you serve that to her for her evening snack? 

Best wishes,

Kali




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Foodsupport_AUS

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Reply with quote  #4 
Unfortunately this sounds very normal. Some kids are much more passive, but others are much more demonstrative. My experience has been that those who are confronted by yelling, throwing and breaking things seem to be more successful at re-feeding than those whose children just sit. Every time you are out waiting her for an hour and she eats, that is success!!! Yes, it is hard to feel it. 

It sounds like your D is aware of what you are doing food wise? Have you considered magic plate? That is you decide what, when and how much your D is eating. Mixing it up, may initially produce distress but for many kids the less choice they have in the matter (you make/require them to do it) often the less their brain is telling them they are doing something wrong. 

Your real D is in there, at the moment though her starved brain is stopping her from behaving like her normal self. Keep feeding, try not to be afraid of ED nor to engage ED. 



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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.
meadow

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Reply with quote  #5 
Hi Scaredmom

Welcome, although it's so sad that you need to be here.

I've been exactly where you are. Our daughter (8) was VERY physically aggressive at mealtimes, which was completely out of character for her. She hit, threw stuff, kicked, spat, scratched and Chinese burned. It was mainly directed at me, although my husband did get a bit. We tolerated most of it and did damage limitation (got rid of sharp objects, moved younger sister out of the way etc), but we drew the line at biting, and a firm 'No, that's not acceptable' worked for us.

Eva Musby's book is amazing and I really recommend it.

Try to separate the ED from your lovely daughter. It's not her who's a monster but the illness. She's in there and you will get her back.

There's a saying here that if you're getting flack you're on target. You can look up my posts - they've quite recent and I got loads of wonderful advice here during refeeding.

Other things.....

Keep your daughter out of the kitchen!
We didn't let D do any exercise at all (not even going upstairs unless absolutely necessary).
Has she got Fortisip (Ensure)?
It's so hard not to get into discussions with ED, but we used a stock phrase e.g. 'We love you, we know it's awful but this is what you need to eat'.
Some people put a time limit on meals - that didn't work for us so we just carried on until she ate. Many times that meant a snack or meal could take 2 hours.

I really, really feel for you. This is the hardest thing you'll do, but it will get easier. Keep posting xx
scaredmom

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Reply with quote  #6 
Thank you all for your supportive advice! She did eat her  evening snack extra nuts and all(juice and fruit), but with dad- it is almost 9 pm here! She does lash out a me as I prepare, plan and plate all meals,not dad.
She never did overexercise before, but now she says she has to stand all the time and will NOT sit down- walking all over the house and acts defiantly "no I won't sit". How do I stop that? She only started that when she was told 4 days ago that food would be increased.
As many of you have stated, this is the hardest thing I have done in my life.
She does sometimes talk about her anxiety... "mom I am scared about having snack tonight" I tell her that I understand she is scared but I will not let anything happen to her. I live meal to meal, calorie to calorie...
I will do the Magic plate. What a good idea. I know this takes time... will I have the strength?
This has been so helpful, thank you again.



Torie

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Reply with quote  #7 
Hi scaredmom - So sorry you needed to join us here.

Many here have had to deal with violence during re-feeding.  I would urge you to stand firm on not allowing your d to hit or kick - everyone in the family deserves to be physically safe.  Some have found that if they call the local police department, they are able to speak with someone assigned to mental health calls to learn how they respond to those calls.  Sometimes a police officer can come to the house and speak to the child.  Other times the parent needs to explain (calmly) that if the violence happens again, the police will need to be called.  Of course, if you say that you have to be ready and willing to actually call them.  

On top of the outright violence, this vile illness is a bear to deal with.  It sounds like you're doing great to be able to outlast her until she eats.  Exhausting, I know, but so worth it!  Every battle you win weakens ED.

Hang in there.  Once they are back to a proper weight for a while, it does get better.  xx

-Torie



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EC_Mom

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Reply with quote  #8 
I'm so sorry...and it sounds exactly like our d. Throwing and smashing things, hitting and punching, tripping and kicking me, all of which was entirely out of character. 

Please know that IT is making her do those things, and inside she feels terrible. My d let me know that later on. So try not to get angry, which is difficult. I was in touch with the mental health liaison of our local police to find out what would happen if I called 911. And I found that when I picked up the phone to do that, my d calmed down. I think she was relieved that I wouldn't let her get away with the violence.

Ultimately it was about eating her way back to sanity. I took off work, spent HOURS AND HOURS feeding her. Me holding the spoon, sometimes for hours. Lots of distraction, tv, etc. I had to stay calm and collected amid the storm. Took antidepressants and tranquilizers (esp. before feeding). I had to calmly and patiently get every bite and sip in. It was awful. Now she is much, much better.

If you stay up until midnight feeding her, and she eats, that's what success looks like. Even if there are shards on the floor, if it all went in, you win for that day. Keep posting, great advice on this board.
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Reply with quote  #9 
Managing the exercise compulsion with re-feeding can be really tricky. There is no doubt that with my D the more she felt she was eating the worst it got. It went from compulsive jiggling, to standing all the time, to squats, sit-ups and so on. Many have had kids exercising in bed, cupboards, anywhere. 

The thing that worked best for us was distraction. It was tough, but playing games, teaching her to crochet as activities that tended to need sitting down. Only allowing TV/movies if she was seated, unfortunately the jiggling persisted with this one. Taking her out to places where it was usual to sit - cinemas, classes of any type. Having friends over and getting them to do quiet activities. It is hard to stop all of it.

Some others have managed to add in an extra drink if there was compulsive activity - I think mamabear gave her D a warning then if she was unable to stop she was given a supplement. 

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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.
mjkz

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Reply with quote  #10 
Quote:
I think mamabear gave her D a warning then if she was unable to stop she was given a supplement.


So did MJ!! [biggrin]  My daughter got two warnings and then had to drink a supplement to compensate for the calories burned.  I also talked to the police and so if she became violent all I had to do was pick up the phone.  I did things a bit differently than others here because I required that my daughter control her behavior all the time and it worked.  I knew she would have to control her anxiety and behavior out in the real world so I made sure she did the same at home.  We had a room that was specifically designed to reduce stimuli so dark, soft things, weighted blankets, music if she wanted it and when her behavior spun out of control she went in there.  I still required that she eat all her food, etc. but I had a zero tolerance policy for acting out.  Some here go for just getting the food in and that worked for them.  My daughter needed consistent strong boundaries and so I didn't treat her any different pre ED than after or during refeeding.  Also if she was IP, they would not tolerate any of the behavior you are describing and so once she had been IP, we just continued the same rules.
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Reply with quote  #11 
Scaredmom

I have been in your shoes with a then 10.5 year old. She spit, hit, threw things etc. She wouldn't sit down. She compulsively exercised every spare second including at 3am.
Now she's almost 17 and has been back to a totally utterly and completely normal teenager for well over 3 years, but it took 3 plus years of hard work and persistent, consistent vigilance to get through it all.

Here are a few things I would recommend:

Sleep with her. For as long as it takes. My daughter later told me that sleeping with me made her feel much safer from the ED. It couldn't " make" her move as much because it knew that I was there. We slept with her for a good solid year.

3 strikes and Ensure. When my daughter wouldn't sit, she would get three warnings ( for any extra exercise too). On the third strike she had to have an Ensure to replace burned energy. AND YOU MUST FOLLOW THROUGH NO MATTER HOW LONG IT TAKES OR WHAT TANTRUM ED THROWS AT YOU! We also set timers in the beginning for short amounts of time that butt had to be on the chair and feet on floor and then made the times longer and longer. I kneeled in front of her breathing with her, progressive relaxation, imagery etc.

Use plastic or paper plates. Save yourself the money, clean up, and effort of dealing with broken plates and glasses if she is breaking them. It is not forever.

MAGIC PLATE WORKS GREAT FOR 12 YEAROLDS!
This means you buy, make, and plate all food and her only job in the world is to eat it. She doesn't need to know what is in it. NEVER EVER EVER TALK NUMBERS WITH HER! No calories, fat grams, weight goals etc. She is 12. She will need to keep gaining for many years. It is pointless and damaging to talk any numbers with her. ED will only use any number talk as ammunition. Expect her needs to rise. Puberty will take more calories and fats than you can imagine. Her body may very well need more cals and more food as time goes on. My daughter needed high cals for several years. This is not at all uncommon. My d started at 4 feet 7 inches and 67 pounds and is now five feet four inches and 140 pounds.

Expect ED to fight you. Expect ED to use your daughters' face and voice to try to do anything possible to get out of eating and sitting. Remember THIS IS NOT YOUR TRUE CHILD! SHE IS IN THERE AND IS THOROUGHLY RELIEVED THAT YOU ARE FIGHTING ED FOR HER! She can't do it herself right now. The ED beats her up 24/7. I promise you your daughter WANTS TO SIT. My daughter later was able to tell me how exhausted she was. How her body ached and joints throbbed. How hungry she was. She was SO relieved when we took away any options and any choices. She fights you because you are the most vulnerable to her ED. It knows how to play on your maternal instincts to soothe her. You have to be a brick wall. Very calm. Don't negotiate with ed. Don't get into big conflicts. Just acknowledge it is hard and keep feeding.

This takes TIME AND FOOD AND MORE FOOD AND MORE TIME. Don't let yourself feel pressured to follow any kind of timeline. It takes as long as it takes. It seems 3 years tends to be somewhat of an average timeline to full remission.

Watch her. Sit with her. Bathroom before food with door open. No bathroom after food for an hour or more. Door open while in shower ( I sat on a stool outside of shower). Eat lunch with her at school 1:1. The most important thing right now is weight gain as fast as possible and supervision 24/7 of possible. The medicine (food) needs to go in every few hours and movement eliminated as much as possible. No gym. No recess, no sports. My daughter helped the art teacher at those times. My daughter used to sharpen her pencil 30 times a day at school to stand so we arranged with her teacher that she had to use pens. You do whatever you have to do to kick EDs ugly ass out of your house.

I know it is hard. Exhausting. It sucks. But there is light at the end- I promise you!

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scaredmom

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Reply with quote  #12 
Hi everyone,

Things seem better... I hope. She actually eats all her meals.  Less fighting overall. Gained .2 kg in 4 days.  I am not sure if I handled a situation well  last night.  Is is OK to substitute one food that she does not want for one that she wants in the moment or am I "giving in" ie she said she would rather have the cookies vs the granola bar ( same calories)so I gave her the cookies and she had a nice snack with dad- I guess as I see this in writing it seems ok .  She fights at times over the last one biteful. I make her eat it. She gets mad but then in half hour she is cheerful.
How do you stop the "measuring" stuff? She will only accept certain foods in this one cup I have ie grapes, fruit, goldfish crackers.  If I put the grapes in a different bowl she freaks out! Then dad has to show her that it is the same amount. She is stuck on the "same amount" all the time. I need to mix it up but am fearful of her anxiety (fighting) . I think I will just do it and let it happen. Better now then  many months from now.
All the advice has been wonderful. Thank you for your empathy and tips... I am trying hard to use them confidently.
This illness has zapped all my confidence. Feeling better today, with a few successes.
mamabear

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Reply with quote  #13 
Yay you!!!

You have to keep poking the beast.
Mix it up. Don't use the same cups and bowls. No measuring- eyeball. This is all ED talking. You can get 2 pounds a week- that is totally attainable.
You are doing GREAT!!!!! We ALL felt/feel insecure in dealing with it all. It's so hard.
And yes if you occasionally substitute a food- that's ok as long as it is the same or MORE cals. I found my d would actually often choose a higher cal item strangely enough.

You've got this and we've got your back!

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Torie

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Reply with quote  #14 
Quote:
Originally Posted by scaredmom
If I put the grapes in a different bowl she freaks out! Then dad has to show her that it is the same amount. She is stuck on the "same amount" all the time. I need to mix it up but am fearful of her anxiety (fighting) . I think I will just do it and let it happen. Better now then  many months from now.


Yes, true.  I wonder if you can get her dad to do it the first time.  Just a thought.  

So glad to hear her weight is up a bit!  Keep up the good work!  xx

-Torie

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mnmomUSA

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Reply with quote  #15 
I think it's ok to offer a "choice" of two things that are really the same in terms of nutritional value.  I would do that:  do you want a yogurt or a glass of milk?  But, choices have to be very, very limited.  Choices can be overwhelming for them as they internally try to calculate which is "better" for the ED.  So, very limited.  

And, you've to ditch all measuring instruments.  ALL OF THEM.  For awhile, I removed them from the house (we have a lake home where they went to have a "vacation"), and I would confidently say "it's the right amount" and plop it in front of her.  (I kept a very basic set of measuring spoons and cups for baking, but NEVER for serving....and those were hidden).  Varying containers is an excellent idea.  If there are certain containers she "demands" for servings, perhaps those could get "lost" or "broken" (such a pity).  I constantly mixed up serving glasses for milk, for example, so she couldn't fixate on "too much."  Really no way for her to know.  (That is not to say there wasn't push back...obviously there was, but if you stick to your guns, it will soon abate when they realize "resistance is futile.")

And mama bear is right...deep inside, your D is grateful for what you are doing and hoping you can outlast the monster that is torturing her.  It's not her...it's the monster. 

One small thing that was very helpful to us early on was to name the demon.  In our case, "Damien" was his name.  It helped a lot for me to separate the two and always remember it was more than just "her" at the meal....it was the two of them.  Treating it as a third party was helpful in maintaining my calm with my D, who was just his terrible victim.  We would talk about Damien all the time...Damien needs to go away.  Damien, you are not welcome at this table.   That sort of thing.  

And, yes, this illness is confidence zapping because progress is so slow and so incremental, with sometimes steps back.  The important thing is to take time to recharge (DH and I would trade off on feeding sometimes to give the other a break), and keep going.  Don't beat yourself up over times you "lose it" (because I sure did....more than once), but just apologize and keep going.  

My D is now 17.  Fully recovered.  Living a normal teen life.  Stopping at Starbucks "just because" with her friends, and buying those outrageously caloric drinks. An impossible dream 4 years ago.  It's a long road.  Long and bumpy.  But, you WILL get there.

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D, age 17, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)
LauraCollins_US

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Reply with quote  #16 
Scared mom, you are going to have to change your name soon: you're becoming a skilled Fierce Mom and a great team!
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mamabear

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Reply with quote  #17 
I agree. I think it should be " badassmom" !
You are SO on the ball! I know it doesn't feel like it but you are! And yes- let your husband have some battles too. Let ED know you are a TEAM!

My d asked me to make " that homemade mac & cheese that you used to make" for Easter. I nearly fell over. That happens to be a Paula Deen recipe!

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meadow

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Reply with quote  #18 
Hi Scaredmom (Badassmom!).

You are doing brilliantly.

My D had a huge problem with things being the same size. We increased her portion sizes very gradually as her anxiety was so high, and later on in refeeding rewards helped. Sometimes we broke her food into pieces so she couldn't tell that we had added a bit (although she would often put it back together like a jigsaw). Others here have done it in a less gradual way - you will find what's best for you.

Our D also had a really rigid thing about only drinking out of shot glasses. If we put the exact same amount of drink in a larger mug, she totally freaked out. We knocked this on the head one evening. It took over two hours and I was absolutely battered. But, we kept on insisting until she had drunk out of a normal-sized glass. (In hindsight I recommend plastic!) Although it was hideous, it broke the rigidity, and moved us forward. She tried to revert to the shot glasses again afterwards but it was much easier to overcome after that initial evening. I got a lot of support from this forum during that 2+ hours.

X Meadow
scaredmom

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Reply with quote  #19 
Hi everyone thank you for supporting me. It has really helped me not to feel alone. Everyday brings a new challenge. Last night for snack dad gave it to her- he plated everything. She did not like it and wanted me to do it over. I just agreed with dad and she ate all under some duress.  She tried to leave 4 peanuts from the trail mix but I stood firm and she ate it.  She had a temper tantrum and threw a toy- that was OK. This morning for breakfast very angry at choices... then I gave her something else and she ate under stress again. I am so scared when she says "I will never forgive you" "you did this to me" " you took everything from me", that she means it and that I will lose her over time.... (so sad). Her anxiety over the morning food spills into other things like " now I can't get ready for school properly". Did any of you experience that? There is a bit of OCD personality traits too and perfectionism that I have read goes with this. She likes to go to bed at the same time every night and wakes up at the same time. She wants everything to "be the same". I think she finds comfort in the "Sameness" so she can control something when other things feel so out of control .  Does the thinking part get better? and when?  Therapist says only when weight restored they will talk to her about her thoughts why not do some talking to her now too?
Still trying to get her to sit still. She is too jumpy. I suggested if she sit quietly I would take her for a 15 min walk.. then dad took her and went well but then back to standing all the time- so exasperating. I hate feeling like I am punishing her.
Sad this morning and worried about her.
I wish I had very long arms to hug you all! Thanks for being here and for your expertise and guidance.
Foodsupport_AUS

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Reply with quote  #20 
This really sounds just so normal to me too. It truly does get better with time. 
A lot of what you are seeing is her anxiety, her desire for sameness is because her anxiety is so hard to control. If things are predictable it helps to slow that fear down. Routine at this point is great. Her job at the moment is just to keep on eating, our job as much as possible is to try to control the environment around them stable. Needing to eat causes unimaginable anxiety, so trying to contain that to a degree makes sense. Often once they get going on weight gain the flexibility slowly but surely creeps in, it is often at such a slow pace that you barely notice until you look back a few months and see how much things have changed. 
You are doing really well, keep going. 

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sk8r31

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Reply with quote  #21 
The tincture of time truly does help....and you WILL find your true d coming back to you when she is healthy.

I also heard many of kinds of things that you are hearing from your d, "I hate you", "I will never trust you"  and on and on...some nasty name-calling as well, during times of stress.

However, I now have that loving d back again, and have had for some years.  I would say that weathering this incredibly difficult ED storm has made us closer in fact.

What helped me most was to try to separate my d from the illness, and not to get into discussions or arguments about food during meal times.  I refined my 'distracting' skills...acknowledging her discomfort or distress, and then distracting with whatever I could...kind of like managing a toddler's tantrums...only this girl was 17!  It took practice...

Anyway, just wanted to say that this phase should pass with time.  Hang in there, you are doing great work!

Warmly,
sk8r31

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mnmomUSA

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Reply with quote  #22 
Yes, she will come back. I remember the first time my daughter pushed me from the room while in the hospital saying "I hate you" and "never come back."  I ran to the waiting area at the end of the hall and just sobbed.  How could my sweet baby HATE me.  And, why was food (early in the process) making it WORSE.  Was I doing the right thing?  It was horrid, in a word.  

But, this is where is is very helpful to separate the ED from your D.  Those ugly, blank eyes that stared at me wildly pronouncing disgust and hatred for me were NOT her....that was the terrible ED.  

My D has been "back" for awhile now, and all those terrible things she said are in the past.  She doesn't even remember them.  She is loving, kind, sweet....the gentle caring soul I've always known her to be.  

Your D is in there.  Keep feeding and she WILL come back to you.  I've seen it happen time and time again on this board.

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D, age 17, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)
Torie

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Reply with quote  #23 
Scaredmom - please listen to me on this:  Your real d wouldn't get furious because you made her finish 3 peanuts or any of the other nonsense you hear spouting from her mouth.  THAT IS NOT YOUR REAL D TALKING!!!!  Oh, no - it is the vile monster illness that has hijacked her brain.

Ignore ignore ignore and change the subject.  Those are the skills you need to become pro at.  (First you briefly comment that you're sorry it's so hard or whatever.)

The only thing that matters is proper nutrition.  That's what will win you your real d back.

You can do it - you are doing it - it is hero parenting and it sucks that you have to, but YOU"RE ROCKING IT!!!!!!

Keep going.  xx

-Torie

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Torie

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Reply with quote  #24 
Quote:
Originally Posted by scaredmom
Therapist says only when weight restored they will talk to her about her thoughts why not do some talking to her now too?


In my experience, there is really nothing to be gained by striking up a conversation with ED.  Unfortunately, ED is in control of your d's brain at the moment.

It was so hard for me to wrap my mind around this, as my parenting style very much includes consulting with my kids about everything that pertains to them.  Worked for me before ED and works again now (after ED), but during ED?  No no no.

Nutrition.  Stop the movement.  Turn a blind eye to the rest. That's the ticket.

Oh, and three cheers for your h, too!

scaredmom (and dad): 1
ED: 0

Keep up the good work. xx

-Torie

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iHateED

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Reply with quote  #25 
Wow scaredmom, I am very impressed with how quickly you were able to grasp the situation and take control.  Let's just say it took me soooo much longer to get to that point!  You have a great team on the ground and some great support here on the forum!  I just want to add that your real D will come back to you one day and she probably won't remember much of the bad days and the things she said to you.  My d would scream at me for hours -- always me, never her dad -- that I was making it all worse, that she couldn't wait to move out of our house, she would never come back, never forgive me, never trust me, and all the nasty things she could thing of.    She was very violent at times.  Threw her food, plates, the blender, anything in arms reach when she was having a meltdown.  Now that she is in strong recovery and enjoying a life at college and ED free, we are closer than before.  She confides everything in me.  She knows that she can trust me. 

Your only job now is to keep feeding and keep her safe.  Ignore as much as you can.  Distract with back rubs, TV, games, coloring, anything she likes.  I agree that talk therapy doesn't help until her brain is healed with steady food and time.  Think of it like talking to an alcoholic who is still drunk.  Nothing you say will help. 

Keep up the great work!  Hang in there and take care of yourself too. 
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