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yellowcaty

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Reply with quote  #26 
Hi beeessbee

I got a sick note from the doctor. They were very understanding and classed it as 'family stress''. I will have had 11 weeks off but may need to extend it further depending how next weeks weigh in goes. It was our only option as we have no family near. I had never had time off work but am so glad now that I did it. My only regret is that we don't seem to have got very far. She was very poorly when we started and was eating around 300-400 calories, so she has made lots of progress if no weight gain. We don't know what her target weight is, so I'm not sure how long it will take. Have you been given a target weight from CAMHS?
beeessbee

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Reply with quote  #27 
Hi yellowcaty

No we don't really have a target weight. Just a target zone based on what she used to weigh, and roughly where she would have been for her height and age (as a kid she was always tracking around 50th percentile). She lost weight slowly to begin with, when we weren't aware of what was going on, but in the last 10 weeks she lost a massive amount very quickly - so the healthy target zone is a really long way off. 
beeessbee

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Reply with quote  #28 
So today has been all about returning to school after the break. I was worried about how well my D would eat - and it turns out she did really well and ate nearly everything I'd given her. The really tough part was this evening. She was pretty horrible to me - said things she would never have said. Told me to "shut up" when I was trying to be encouraging. Feeling so much despair and have no idea how we're going to get back on track. I know I need to focus on one meal at a time. And tomorrow is a new day. But I am grieving so much. I feel I have lost my loving kind D. I know it is the ED talking and I have to ignore it but it is so very hard.


yellowcaty

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Reply with quote  #29 
Hi beeessbee

Please know that you are not alone. It is really hard and heartbreaking when they seem to have changed overnight and start to say things that are at odds with the child you know. At the moment it is all new, for me as well, but you do begin to realise that it is not your little girl saying all of these things but the ED. This is what helps me through and the comfort from this forum that you do get your child back.
I found some good videos on here today that really helped. I am not sure where I found them but if you search videos for parents they will probably come up. If I find them I will try to send the link. Have you read Anorexia and other eating disorders by Eva Musby? It is a really good book and explains some of the things you are going through and might experience on the journey.
If it is any comfort, my D is still not talking to me properly after our trip to the clinic yesterday. I know that she is scared and needs to take it out on someone. You just have to stay strong and let them know that you are there, you love them and will never leave them. I'm not sure when it will get easier, as we are still at the beginning of the journey with you, but know with strength and determination that it will.

Yellowcaty
beeessbee

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Reply with quote  #30 
Hi yellowcaty

Thanks so much for your post. I have read Eva Musby's book - almost cover-to-cover. It is reassuring to know that I will get my D back - it's just incredibly difficult living in the present. I will try to stay strong. Hope today goes better for you and that these few days at home, before start of school, help get things back on track. 

Beeessbee
tammy

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Reply with quote  #31 
Hi Yellowcaty and Beeesbee. I can relate to the utter despair and thinking we will never get out this situation. We have an eight year old son diagnosed in August 17. We have had a long hard slog and at points hardly recognised our son due to extreme anxiety and temper tantrums including violence and utter despair. We followed a lot of Eva Musbys advice and it has really worked for us. I went back to work a few months ago but found it too stressful as I started to let things slide as I knew I had to get to work. New behaviours were arising such as wanting to get up really early, not eating lunch if it was wet and he wasn't going to get out to play etc.
I took the decision to take time off and have spent the last three weeks tackling all these behaviours and withstanding the tantrums to show ED who is boss. I have been amazed by results. The festive period is a difficult time and he has been really settled and more like the son we knew. He still gets scared and we get the occasional tantrum but nothing like before. He is tackling fear foods and is doing well. I know we are dealing with different ages of children but just wanted to give you some hope.
Tammy
tina72

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Reply with quote  #32 
Hi there,
great that she ate in school!
You will not really need a fixed target weight because most professionels set it too low. The best "target" is state, not weight. You will see when they are in a healthy state when their behaviour changes. For us that was at 1 kg above target weight, some here needed to put on much more. There will be a time when you see much more progress.
Please try to forget all those terrible things they say to you. I know that is really hard but that is not your d who told you to shut up, it was ED. ED doesn´t like when you say things that comfort her or make her stronger. You are the enemy for ED and your d will tell you that for a long time. She might say horrible things and even hit you and kick you. Looking back now I can tell you that my d today does not even remember she said those things to me. They forget all these things of early refeeding and that is good so. Otherwise they will not be able to get under your eyes again with all the guilt they feel. So if she says those things, go against ED and continue being nice if possible.
Tina72
beeessbee

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Reply with quote  #33 
Thank you Tammy and Tina72 for the advice and support. Yes - I do remember seeing that about state, not weight, in Eva Musby's book. We have given the ED voice a name and I do try very hard to remind myself that it's the ED talking to me like that. I keep reminding myself that my D needs love and compassion always. 

beeessbee
beeessbee

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Reply with quote  #34 
Had a really really difficult time getting my D to have her afternoon snack after school today. Turns out that conversations at school have been really triggering...friends of hers were talking about going on diets after their christmas indulgences. In her irrational state of mind, my D couldn't understand why they could get away with not eating when she had to eat lots 6 times a day. No amount of reasoning with her, that dieting can contribute to EDs etc etc, and that she needed to get back to health helped. And I'm terrified that these kinds of conversations will keep triggering and increasing her resistance. Any ideas on how to deal with this? It's not like I can go into school and tell all her friends to stop talking like this (my D has only confided in two close friends about her own AN).


mjkz

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Reply with quote  #35 
Quote:
Any ideas on how to deal with this?


I often said to my daughter that different people need different things and just because her friends want to diet doesn't make it the right choice for her.  I don't know if you have other kids but sometimes pointing out that she doesn't need the same as her brother or sister or you for instance can help cement that point.  I found I needed to keep repeating that dieting was not an option and not the right choice for her and then refused to discuss it anymore because we all know how ED loves to argue and negotiate.
Torie

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Reply with quote  #36 
Quote:
Originally Posted by beeessbee
In her irrational state of mind ... No amount of reasoning ... helped. 


Not to be flippant, but that's pretty much the definition of irrational - reasoning doesn't work.  It took me a long time to believe the good folks here who encouraged me to acknowledge D's feelings ("I'm really sorry it's so hard") and then change the subject, instead of trying to reason with her.

It's great that your d still has friends, but it sucks that your d (and all our kids) has to hear this type of thing from them.  It's a tough journey in so many ways.  

Keep swimming.  xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
tina72

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Reply with quote  #37 
There are a lot of these triggers in their life the whole day. It is sad, but you can do nothing about it. I was shocked about how many times even in funny soaps like Two and a half men or Big bang theorie they talk abut diets and weight and thin bodies. You cannot avoid that talk, but as the others said you need to comment that different people can do different things and that healthy people might be able to diet if needed (and in most cases it is not needed), but that sick people need to follow different rules. I often said to my d that AN is a metabolism disease like diabetes and that a girl who has diabetes is not allowed to eat normal sugar and chocolate by the doctors and in the same way she is not allowed to diet. And then change the subject.
Interesting is that today after WR these talks in TV or family are more difficult for us parents than for my d. She said to me that this is normal in her life and it doesn´t hurt her any more. But I still get a big throat when my MIL says at the table she cannot eat one more piece of cake or she will have to diet...[wink]
Tina72
yellowcaty

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Reply with quote  #38 
Hi
We are still really struggling. I am trying to make sure she eats lots, but each day something seems to happen to prevent this. I have been adding whatever I can to meals without her knowing. I am really worried about weigh in on Monday and feel like there is something I am missing.

I'm sorry that all I seem to do is complain about how things are going, but I feel so lost at the moment. My H does help, but doesn't seem to have grasped it completely. He finds it hard to talk about ED and not D as he can't separate them. He is very caring and sympathetic and supports her entirely to get beat this. I have taken control since the start, so I find it really difficult to hand over care. I went out for lunch yesterday and found that he had only given her half her lunch. I had prepared this part and he did know what else she needed to eat. When I found out later that she hadn't eaten it, he said that I hadn't left it out so he didn't think she needed it. My D then said don't have a go at dad he tried his best. I'm not sure why this comment upset me so much, but it left me feeling deflated.
frazzledmum

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Reply with quote  #39 
Yellowcaty, I have exactly the same problem with my H, he says things like, 'have you finished? Ok, you don't have to eat anymore...' which totally undermines what you are trying to do and gives ED the message that you are not united and can therefore play one of you off against the other.  When he is engaged, however, he is really good and backs me up, which is all I need to stop me feeling so frustrated, but he is not consistent enough with this. Often I feel as If I am fighting 2 battles.
My H has also stopped going to appointments with us which is also unhelpful. I think for him he is so lost with everything and he can't understand it at all that for him, the only thing he can do is shut down. Our dr says that ED affects the whole family and he is right.


'My D then said don't have a go at dad he tried his best. I'm not sure why this comment upset me so much, but it left me feeling deflated.'
That's easy to answer, ED is backing your H up as it got away with D eating less. He is now ED's ally and you are the enemy - that's how it works with us anyway. You are deflated as you know that you are fighting both of them....I have tried explaining to H that if we are united, then it is harder for ED, but he doesn't seem able to put this into practice.
kazi67

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Reply with quote  #40 
Hi yellowcaty and Frazzeldmum
unfortunattely yes it definately effects the whole family [frown]
I found privately talking to h about ALWAYS backing anything I said to be VERY important and if he couldn’t then to not say anything
I think it’s so important to be a united front
It’s so hard, so tiring, we all understand
Don’t give up, you can do this
3 meals 3 snacks!!!! x
tina72

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Reply with quote  #41 
Hi yellowcaty,
think about what it is that happens to prevent this and try to close the gaps. Give us some examples so we can try to help you.
I think the problems with the dads is that they don´t want to be the one to blame. It is a dad and daughter thing.
Try to make him talk to some dads here, maybe that would help. If he wants to help you get her out of that, you must speak with one voice. There is time for dad being the one to spoil her afterwards.

Hi frazzledmum,
if your h cannot help you 100%, ask him to stay out of it for the moment. You don´t have power to fight two battles.
My h got it after reading "Brave girl eating" by Harriet Brown. Maybe worth a try.
Try to talk to him and explain that being on the same page is very important. Do not do that in front of your d. He would not allow her to stop taking chemotherapy if she had cancer. Food is her medicine and there should be no discusssion about that. What you plate has to be eaten.

Send you both a big hug. Keep swimming!
Tina72
beeessbee

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Reply with quote  #42 
Hi yellowcaty and frazzledmum

Sending you both big hugs too. I am very much at the start of this painful journey, so can only add that I have a similar situation. It is made worse by the fact that my D's dad and I are divorced. He is 100% supportive, and is totally on the same page as me, and we are both trying to be completely consistent. But the fact that she has half her meals with him and half with me, means that even the tiniest bit of inconsistency gets used to play one of us off against the other. It is so very difficult. In some situations the fact that my D has eaten anything at all feels like such a bonus that trying to stick it out until everything on the plate is gone is a challenge that one or the other of us have not succeeded with on several occasions. The only thing we can do is to keep talking to each other about trying to achieve as much consistency as possible - and to keep each other updated on what worked and what didn't.

yellowcaty:
Please try not worry about the weigh-in on Monday - as various people have posted on here - "focus on one meal at a time".

beeessbee



yellowcaty

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Reply with quote  #43 
Thank you all for your support.

I think I was just having a bad morning today. It just seems that no matter how hard I try something goes wrong. We do attempt 3 meals and 3 snacks a day, but my D will do anything to avoid eating. We have talked about how the doctor is going to insist on hospital soon if she doesn't start to put on weight (she is now 1.4kg lower than her initial assessment weight after 11/12 weeks), but her answer is that it is only a threat to make her eat and there is nothing wrong with her anyway. We are always playing catch up with food. Last night she had to have a forticip, cereal bar and hot chocolate at 11:30, to make up what was missed. I went to bed feeling quite pleased that we had managed all the food (even though it was late), but this morning found that she had been sick again.

I am so sorry that any of us has to go through this, but it is so comforting to have found people that actually understand.
mid73

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Reply with quote  #44 
I hope her treatment team aren’t using hospitalisation as an idle threat. It is so hard sometimes to get weight gain going and whilst it’s obviously great if it can be done at home, if it isn’t happening, they need to be prepared to follow through and organise that higher level of care. Our Camhs team did so and I am forever grateful to them. It showed anorexia we were very serious and whilst it is not a magic cure, it turned many things around for us. Maybe you need to talk to them prior to your appointment as to what their plans are if you simply can’t move forward at home.
Foodsupport_AUS

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Reply with quote  #45 
Yellowcaty it is great that sometimes you are getting all of her food in. Since you have been at this for three months and so far achieved no weight gain, would you consider actively seeking a higher level of care? I would not be discussing this with your daughter, she is truly unable to look at this in any rational sense. My D had multiple hospitalisations often only days or a few weeks apart (we are in Australia) but at no point did knowing that she would be re-hospitalised help her to keep eating enough food at home. This is burning you out, and so far despite all your efforts there has not been any headway. 

You know that she really does need to gain the weight, and it is getting to the point if you are unable to make any improvements with gain at home on a consistent basis negotiating with her team for a higher level of treatment may be a good way forward. 

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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.
beeessbee

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Reply with quote  #46 
Hi Yellowcaty
Good luck for the weigh in tomorrow. Thinking of you.
Beeessbee
Torie

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Reply with quote  #47 
Quote:
Originally Posted by yellowcaty
I'm sorry that all I seem to do is complain  


Please try not to feel bad about that, ever.   That's why we're here - to dust you off , slap on a fresh pair of big girl pants, and send you back in the ring with.

I remember the day I asked my h if D had eaten breakfast before school, and he said yes.  When I asked what she had had, he told me a piece of toast!!  I hit the roof.  We had some false starts (obviously), but in the end he was really good about making sure she had a good breakfast.  So there is hope.  Others have found that their h's were untrainable on this and needed to be assigned different tasks as their contribution.  Either way, you will find a way through.

I don't think my h would have read a whole book so I picked out passages to show him.  Lock and LeGrange book has one I loved about the importance of being not just on the same page, but also on the same line and the same word.  

I always get mad when these kind of things happen, but when I see someone else going through the same thing, it is clear to me that a different response would be more productive.  I'm sure he loves your (his) d, and the last thing he wants is to prolong her suffering - the obstacle is the lack of understanding; not a lack of feeling.  Be prepared though, because even when he seems to understand what is needed, he will inexplicably drop the ball anyway for a while.

This whole illness is crazy making.  Takes a toll on the whole family and all the relationships.   One thing that motivated me a lot was remembering that whatever helped ED was the LAST thing I wanted.  ED loves setting the parents against each other so if you get mad (like I always did), that is a win for ED.  You are the teacher and your h is the student, which may not be a role he accepts gracefully.

It is so hard.  There is so much muddling along in the early days.  But it does get better. 

Hang in there.  And remember we are with you in spirit. xx

-Torie

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

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Reply with quote  #48 
Thank you ever so much Beeessbee, Torie and everybody else. I don't know what I would do at the moment without you all.

H has been better and even put cream in her porridge this morning. He is trying and has started to back me up when she is trying not to finish food.
After a tricky start she has eaten nearly everything we have given her this week. However there doesn't seem to be any interest in food at all. Even at the cinema when I tried to suggest some popcorn she replied why would I eat that. She used to love food and would eat anything. Looking back at photos of the summer holidays and she looks like a completely different child.
First day back at school today and she has her Alevel mocks. She has worked so hard for them but was in bits before she left. There is no expectation from either us or school for her to do them. We don't know whether being at school with friends will give her some motivation back or not. She was off all of last half term. I have decided not to go back to work on Friday as it seems like we might be back at the beginning again.
Anyway, fingers crossed for weigh in today. Any gain will be a triumph!!
Foodsupport_AUS

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Reply with quote  #49 
Wishing you luck for weigh in today.

 
Quote:
However there doesn't seem to be any interest in food at all. Even at the cinema when I tried to suggest some popcorn she replied why would I eat that.


This is normal. Remember her ED is beating her up for eating. She can't be seen to want or to enjoy food. My D loves mangoes. Even though a fruit, early in her illness there was nothing that could induce her to eat one. She was completely unable to enjoy any food. It may take some weeks or months after weight restoration for her to be able to admit out loud that she enjoyed eating. Obviously it is unfair to make her eat foods she has previously always disliked but don't necessarily focus on favourites, it won't make it easier, in fact it may be harder for her. Of course if she asks go for it and later it is important to challenge the self denial of something you know she loves. Right now though getting that weight on is the most important, but don't expect her to enjoy the food. 

__________________
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.
beeessbee

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Reply with quote  #50 
Yellowcaty sending you hugs. Fingers crossed for all of you today.

So earlier in this thread I posted the weight loss following the difficulty of sticking to the meal plan over the festive periods. My Dseems to be eating reasonably again after some significant resistance. But now she seems really very low. Is this something that happens when resistance goes down? Feeling very worried and will obviously flag up to our ED team but wondered if anyone had seen this as well?
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