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deenl

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Reply with quote  #51 
Quote:
Originally Posted by pettelly
What's IP?


In Patient. That is, residential treatment.

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • 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] )
  • We cannot control the wind but we can direct the sail.
Foodsupport_AUS

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Reply with quote  #52 
IP is generally inpatient care. This can be in different places in different countries. 
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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.
pettelly

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Reply with quote  #53 

So some weird stuff going on and if anyone has any insights or advice, I'll be really grateful as I can't figure out what's going on. 

We had another 2 hour stand off over the smoothie last night. At 11.30 she suddenly says that actually she's perfectly healthy and that we put into her head that she's anorexic and she just took a diet a bit too far. She then took the smoothie and drank it down.

And then this morning she took the smoothie and drank it all down with absolutely no resistance or arguing at all, insisting that she's totally fine. She's gone off to school as she really wanted to but husband drove her (she usually cycles - about 5km) and I will go in at lunchtime. 

I've no idea what's going on in her head or why she's saying this now. I doubt that it's been that easy to 'cure' this - if only! And she's not herself at all still, she's been totally flat and talking in an emotionless monotone. I wonder if this is what she's doing because of the doctor's appointment today. But, still, no battles this morning so that's a plus!!

 
pettelly

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Reply with quote  #54 
And I've discovered the 'Pro-ana' sites. Oh my god, this is so messed up,  I can't believe this is even allowed. I'm terrified she might find them as she's still quite innocent in the ways of anorexia. 
deenl

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Reply with quote  #55 
Short of time but it is really normal for our kids to adapt their behaviour in the short term in order to avoid more intense treatment.

The other thing to be very very careful of is to make sure she is not purging either through vomiting or exercising. For 2years now I have been the only person who cleans our bathroom so I can check for evidence of purging. Kids have also been known to store containers of vomit on their rooms or vomit in the garden. Also in the shower. Over exercise can include frantic exercise through the night or during trips to the bathroom.

Forewarned is forearmed. If these are an issue, it is better to nip them in the bud sooner rather than later.

Don't worry that you are making things worse. All the symptoms were already there just more hidden before. Better that they are out in the open.

Warm wishes

D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • 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] )
  • We cannot control the wind but we can direct the sail.
Mamaroo

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Reply with quote  #56 
Hi Pettelly, so sorry you need to be on this forum. I think you are right in suspecting her behaviour is due to the dr appointment today. My d was always super anxious about going to the hospital for her appointments.

When your dr refers you, it might take weeks before she is seen by a specialist. In the meantime she still needs weekly medical checkups. Your dr needs to blind weigh her, making sure she isn't hiding weights in her pockets or hems, take her temperature, and her blood pressure lying down and then standing up at the very least. They can deteriorate very quickly.

My d also threaten to take cleaning chemicals with the result that I had to hide them in the garage. I already had to hide the sharps, knives, scissors and pins.

Unfortunately it is going to go worse before it will get better. So glad your hubby can comfort her.

Best wishes

__________________
D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11. Challenging fear foods now.
tina72

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Reply with quote  #57 
Hi pettely,
that´s great that she drank the smoothies! I think she did it because she wants to get rid of you and show you that everything is o.k. Stay consequent and you will see ED very soon coming back.
Its normal that she is talking in that tone and she will be very unemotional for a while. Anorexia stops them to be emotional and to feel any emotions. Its easier to control them for the Ed. Thats coming back with weight gaining.
I know its hard but try not to think a lot about what is going on in her head. You will never understand it...If she says something you will learn to hear the difference: is there my d talking or ED? At first you nearly only hear ED talking. Then you will see glimpses of your "old" d coming back. And in the end you will have your d back and only see some glimpses of ED now and then (here we are now). We really tried to understand this but it is a brain disease and with a healthy brain you have no chance to understand this.
So be aware of the next step ED will take and try to fight it. You are doing a really good job by getting her to drink that. Keep on going!
Tina72
pettelly

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Reply with quote  #58 
Update in case of interest! 

So today (since lunchtime at least) she has been marvelous, wonderful I suspect it's because when we went to the doctor and he weighed her she'd lost another half-kilo! 

Still, she's saying all the right things and doing all the right things (i.e eating!) so just living in the moment for now after the craziness of the last two days!! We'll see if this lasts if she gains weight.

I'm not sure how we get her calories up though. We're just about making it to 2000, I think, with the shakes. I feel happy that at least she's getting substantial nutrition compared with before and hopefully won't lose more weight but aware it's not enough for weight gain. She's not having snacks yet so we might need to introduce some if we can get them down her. 

Thankfully today's doctor actually examined her and said she's OK but blood pressure is a bit low. He agrees she's got an eating disorder and referred us to the specialist clinic. He said it might take 4 weeks to get an appointment through but he thinks it's better to wait and go with them (i.e the public system) than go privately. I'm not sure I agree and have an appointment with a private therapist for her next week as I really want to get the ball rolling. Even if she gets her weight up, I want her to start talking through her body dysmorphia which has been going on since puberty hit because that's part of the underlying issue. Doctor will see her weekly until she's under the clinic so that's good that there's some kind of medical supervision of her physical condition until then.

And I went into her school today to have lunch with her. We ended up eating with the school counsellor and we agreed that my D will eat with the counsellor rather than me coming in (obviously I'm too embarrassing!) under the guise of improving her confidence in public speaking. So at least I will know if her lunch is eaten or not and she can also speak with the counsellor about some of her feelings. 




tina72

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Reply with quote  #59 
Hi pettely,
that sounds great! You are on a good path and you found some help in school.
2000 calories is too low to gain weight, as you say. Some here needed 4000-6000, we needed about 2500, its very different. Try to introduce snacks. The target is to have 3 meals and 2-3 snacks a day. She has to eat every 3-4 hours to keep her blood sugar constant. Try to add a second smoothie (maybe after supper in the evening). The target must be to gain 500g at least every week. The sooner the weight recovery comes the better.
Psychotherapie and talking about body dysmorphia makes no real sense before weight recovery. She cannot see it. She really thinks she is much bigger than all the other girls. By weight recovery this will get better slowly.
Food is the best medicine right now.
Tina72
Foodsupport_AUS

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Reply with quote  #60 
It is great that you are getting food in. Yes, still work to do as regards gaining weight, though very early on weight tends to go on a little faster.

Like many I made the mistake of thinking that D needed to work on her issues as regards body dysmorphia, depression and anxiety early on in her illness, but I agree with Tina it is of little use early on. Once she is gaining weight and and getting closer to where here weight belongs she will start to find it easier to start working through issues.

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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.
pettelly

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Reply with quote  #61 
So maybe we should just wait for the clinic appointment if the psychotherapy isn't useful at this point? I thought it'd be easier for her to gain weight if she can address the issues about why it's such a problem for her. 

She's already on 2 smoothies a day but the morning one is instead of breakfast rather than as well. 
Yesterday, for eg, she had 2 smoothies (I guesstimate 600 cals each), sizeable hummus sandwich at school (400-500 cals) and large portion of pasta salad (400-500) which is about 2000 cals. She's trying but struggling - I guess we have to build up gradually? 


mjkz

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Reply with quote  #62 
Quote:
She's trying but struggling - I guess we have to build up gradually?


Not really.  You can easily add two or three snacks in there.  I know others have suggested adding a snack but 3 meals is not going to be enough.  What she is eating is great but I'd take the morning smoothie and give it to her when she gets home from school, add a big breakfast and give her a second smoothie before bedtime.  You easily get a 600 calorie breakfast in there (there are some recipes for muffins that are over 1000 calories a muffin) and have her eat one the muffins maybe mid morning and with lunch or dinner.  That adds 2600 calories right there.

Quote:
So maybe we should just wait for the clinic appointment if the psychotherapy isn't useful at this point? I thought it'd be easier for her to gain weight if she can address the issues about why it's such a problem for her.


You would think that and for some it has been useful to work on both right from the start.  I had my daughter in therapy right from Day 1 but honestly they worked more on coping skills and ways to handle distress that weren't self destructive more than body image or why gaining weight was such a  problem.  Did she get full value out of therapy in the early days?  She did on the coping skills but not on the body image stuff.  That came much later.  I don't think you can make a wrong choice with therapy whichever you chose (do it now or wait).  I would focus more on weight gain and add the 2-3 snacks before rushing her into therapy.
Mamaroo

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Reply with quote  #63 
Job well done getting the smoothies, lunch and dinner in! If your d likes the smoothies I'll add another one during the day. Maybe vary the flavour for variety. My d lived on ensures for months and gradually switched over to food. Just make sure she gets plenty of fat and protein. My d had 6 ensures a day totally 1800kcal, which provided 75g protein and 59g of fat. My d gained weight with ensures slowly, so we needed to add snacks as well; cheese muffin, cheese and crackers and a muesli bar. Your d probably needs a lot of calories if she is still losing weight at 2000cal. Is she still doing any types of sport? We discontinued all sport until she started to grow again and then only physical education was added.
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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11. Challenging fear foods now.
Kali

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Reply with quote  #64 
Hi Pettelly,

First, it is wonderful that you have been able to get her to eat as much as you have! What can typically happen is that when they first start eating again after weight loss, the parents can up the calories, say, by 300 a day. So if she is eating 2000 now, try adding a snack today. Then in a couple days, a second snack. Also, you could take a look at the high-calorie thread where parents have written about some of the food which they have used while refeeding to bump up some of the calories in foods you serve for meals. Use butter, olive oil, rapeseed oil, cream, sugar, mayonnaise, full-fat products and other high-calorie ingredients liberally while cooking. 

https://www.aroundthedinnertable.org/post/high-calorie-suggestions-696425#gsc.tab=0

Also here is a link to a thread which lists some online recipe resources I found helpful:

https://www.aroundthedinnertable.org/post/online-refeedingrecipe-resources-8521051#gsc.tab=0

Quote:
So maybe we should just wait for the clinic appointment if the psychotherapy isn't useful at this point? I thought it'd be easier for her to gain weight if she can address the issues about why it's such a problem for her. 


The question of therapy is interesting. I, too, thought that it seemed logical to have my daughter in therapy and she would be able to address the issues with food that she was having. She has been in therapy since the very beginning of when we realized there was a serious problem. However, she was 17 when diagnosed, and your daughter is younger. Certainly, as for any person diagnosed with an illness, therapy can be helpful with feelings and thoughts and distress tolerance and coping skills and to help create a safety net of caring people around the sufferer that they can share their feelings with and go to when they need support. Even at the point where my d. was critically ill and completely "in" the disorder and at her lowest weight, therapy did not seem helpful but we continued anyway. 

I am convinced that this is a biological brain disorder, and there are probably some metabolic genetic defects as well and, for my d, some heritability at play. One wouldn't send someone with diabetes to a therapist to "cure" diabetes. However, if they were in distress, one might encourage them to be in therapy to learn how best to cope and how to manage their emotions and to support them in regularly testing their blood sugar and taking their insulin. That is how I view therapeutic support at this point. In addition, the eating disorder can create stress in the family and therapy can be helpful with that.

What did make the biggest difference, as many others are going to say here, was weight gain and full nutrition. DBT skills (dialectical behavior therapy) and CBT were also helpful after weight restoration. I found it helpful to see a therapist on my own, also, and get solid coaching in refeeding and have a place to vent my frustrations.

Keep going, you are doing all the right things.
Not to alarm you, but make sure you are checking the toilet after she eats to make sure there is no purging going on. I never thought my d. would do that...but she did.

Warmly,

Kali

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tina72

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Reply with quote  #65 
Hi pettely,
therapy doesn´t help her wanting to gain more weight. AN is the only disease were the patient don´t want to be cured and thats normal.
Be hoped that therapy would help her to see that she need to gain weight and that she will feel better than but in fact she couldn´t see that until she really gained weight and felt better. Therapy is from times when they thought it is a psychological disease, but now it is proved that it is a metabolism disease. Its a gen defect on gen Nr. 12 compared with problems with blood sugar and lipid system. They just found that in June this year but it was thought about it since 2008 because there are a lot of families with two sick kids and its more common with twins so they suggested it can be genetic.
Psychtherapy can be helpful in the end but it doesn´t really help you right now. Food is the only medicine that helps you. Try to get in something every 3-4 hours, that will help to keep her blood sugar level constant. Add a lot of fat to nearly everything, her brain needs a lot of fat to recovery. You will see the progress. Keep on going.
Tina72
pettelly

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Reply with quote  #66 
You guys are amazing! Such a wealth of knowledge and generosity in sharing experiences. 

D has continued doing and saying the right things. She had lunch with the school counsellor and ate almost everything, drank her shakes down with no resistance, ate dinner well .

I am worried about purging but she's showing no signs. We took the lock off the bathroom door when all this started so I have 'accidentally on purpose' been poking my head around the door but each time she's relaxed and doing normal things she should be doing. Luckily bathroom is downstairs and next to our bedroom so we'll hear if she does go in. 

I know we need to get calories up but I think, for us, we need to slowly get her used to eating not just normally but more than she did before. She's struggling with the snacks so I think we'll build up. Just the fact that she's eating without battles is a huge relief for now. We also need to get her eating some of what she thinks of as junk food especially sweet things but I'm avoiding for now and sticking with safer foods which are still calorific. Small steps - we also need to build up emotional strength for the next battle! 

I'll keep our appointment with the therapist even if it's just to learn coping skills and we'll see what the hospital offers when she finally gets the appointment through. 

EC_Mom

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Reply with quote  #67 
You are doing great! Yes to increasing calories; the faster she gains weight, the sooner her brain will go back to normal.

Our pediatrician thought that our d needed to understand why she was restricting, why eating was hard. Many, many people on this board spent lots of time and money on this. BUT IT DOESN"T HELP. She has trouble eating because her brain is telling her things that aren't true. There aren't "deeper issues" or even superficial ones that would make things easier. Just eating and eventually working on anxiety management. But eating first!
tina72

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Reply with quote  #68 
Hi pettely,
keep the appointment with the therapist and see what he says, but be aware that he may not know much about ED and possibly could tell your d that you are controlling her and that she has to decide what to eat an her own. If something like this happens, take your feet and run!
But if he knows something about ED and FBT and refeeding it could be a great help for you. Most of the time at the beginning the parents need more psychological help than the kids because its hard to keep on going and you need someone who tells you that you are doing the right thing even if your kid seems to hate you...
Try to get some help from doctors and family and friends but always have a plan b in mind if it is not working. We sat a lot of hope in IP in hospital here with a so called ED unit and after 3 month there everything was worse than before and we only lost time with that. But thanks to FBT we took our d home and everything changed to the best up to now. So try everything out, every patient/family is different and you will soon see what works and what not.
Weight recovery is the most important thing. The sooner the better.
Don´t worry too much about purging. My d never vomitted and she didn´t lie to us, she just said not always everything (I hope you understand the difference, my english is not so good). If I had asked: Did you eat your snack? She wouldn´t lie. But if I asked: Did you eat something on A. birthday party? She might have answered: There was nut cake. That doesn´t mean: I have eaten a piece of nut cake.
Just be aware that it might happen (the vomitting). My d never vomitted up to now and I still poke my head on the bathroom door now and then just to be sure. Trust is good, control is better.
Keep on going and keep on posting and asking. We got a lot of help here and without all this amazing people here we would not be were we are right now.
Tina72
Torie

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Reply with quote  #69 
Quote:
Originally Posted by EC_Mom
She has trouble eating because her brain is telling her things that aren't true. There aren't "deeper issues" or even superficial ones that would make things easier.


i think I might frame that and put it on my wall (and post a copy on the ex-therapists door).  xx

-Torie

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

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Reply with quote  #70 
I am soooo confused. 

Monday the child is suicidal, hysterical and sitting there threatening to drink cleaning fluid if we make her eat, Tuesday I'm 'the witch' and battles at every meal/drink and we're pretty sure that we have full-blown anorexia on our hands - but today and yesterday she's back to her old self, eating and drinking almost everything we give her. How??? 

Am I being totally naive to think maybe, perhaps, possibly this HAS been turned around? That maybe the behaviour and thoughts hadn't yet had time to become established? Am I being stupidly optimistic? I don't want to be complacent if this is normal and we should expect a relapse but I equally don't want to pathologize her if she's OK. Is there maybe a "pre-anorexia" phase that we may have been in? I really don't know what to think (but loving seeing my D eat for now!!!) 
EC_Mom

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Reply with quote  #71 
Pettelly, who knows if it's a turnaround or just temporary--but be sure to enjoy it while being attentive to any holes that need plugging (no possibilities for purging after, for instance). My d had small phases of seeming normality. Get some sleep (after dinner), lay in more provisions. 

I am not a physician and cannot diagnose. As a mom, however, I would say that if your d threatened to drink cleaning fluid if she had to eat, that sure doesn't sound like "pre-" anything. My hypothesis is that your two days of full requirement to comply with nutrition has set ED back. Good for you! It's like a weird demonic thing that does sometimes absent itself for some blessed periods of time. You have to extinguish it, every last bit of it. I wouldn't count on your hard times being completely over, but you have PROVEN to yourself that persistence brings rewards. My experience was that we had good phases that came and went, and then they lasted longer, and a little longer, and then it became the exception when we had a bad phase. 

Your strength is destroying it. Fabulous work.
EC_Mom

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Reply with quote  #72 
Thanks Torie. It was my only way that I tried to "reply" to crazy ED stuff: "Your brain is telling you things that aren't true, so I have to be your brain for awhile." And yeah, we all know the uselessness of "deeper issues" beyond eating. [smile]
deenl

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Reply with quote  #73 
Hi pettelly,

I think the chances of what I'm going to tell you are tiny but just in case... When we had just copped on and started to insist on eating our, son was suicidal. He decided to give us all a last enjoyable week to remember him by and would kill himself the following Tuesday. He ate because it didn't matter any more. He interacted with the family to leave us with those happy memories.

After a few days we had him committed to a secure ward for his own safety. But he was deemed no longer in danger after a week do it did pass quickly. He did still have suicidal thoughts but wasn't acting on them. It's a fine and terrifying line. I always choose to be safer rather than sorry.

But dealing with ED is an emotional roller-coaster so it could be just exactly what you see. Trust your gut.

Warm wishes

D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • 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] )
  • We cannot control the wind but we can direct the sail.
mjkz

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Reply with quote  #74 
Sounds completely normal to me.  Everyone has bad days and good days.  Ed just magnifies those and makes the peaks higher and the lows much lower.  All I can say is keep on with the same goal of refeeding and weight gain while you roll with the mood swings.  Enjoy the good days and keep her safe on the low days.  You will wonder at least half the week if this has turned around and be absolutely certain at least a quarter of the week that this is completely over with and done.  That is the nature of this illness.  Remember this is a marathon and not a sprint.  Once you get to full weight restoration, you will need to keep the higher calories going for at least six months to maintain that weight.  Around the one year mark after full weight restoration, you will notice that things have evened out and the lows are not so low.  Good days will start outnumbering bad but there will still be bad days.  Also when you are in the trenches with this, it is easy to lose sight of the progress you have made because you are constantly surprised and shocked by what kind of day this day will be.  I found it really helpful to journal a bit along the way so I could see the small improvements.  Also the people here are really good at pointing out the progress along the way that we can't see down in the trenches.
tina72

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Reply with quote  #75 
Hi pettely,
I personally think there is no light anorexia or pre-anorexia, its just like being pregnant. You are or you are not.
But there are extreme ups and downs. Be glad to have an up now and be prepared that it might get down again. ED is a tricky thing: you just think oh, its better today, maybe she´s got it and wham! you get the next hard lesson when nobody expects it.
Maybe ED learned already that you are going to fight it. Our d ate everything plated from the first day on in IP. She recognized soon that we will make her eat anyway and that there is no way out with not eating, so she decided if she has to eat anyway she could eat what she likes to. But she still was afraid of some "unhealthy" food and had strange eating behaviours.
So if she is eating, very good. First step. Try to lure out ED by serving some very "unhealthy" food or drive to McD. We all hope with you that ED is aready gone. But I cannot believe that really. So be aware and just hold breath. Every day she´s eating is a good day.
Tina72
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