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wheresmywand

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Reply with quote  #1 
Hi there, i am just feeling so desperate and desolate at the moment and wonder if any of you have been in this same situation and how you might have managed to get kick started again.
A bit of quick history - my daughter has just turned 17, her AN started not long before her 15th birthday; after a bit of wasted time where we just thought everything would come right by itself and after some more wasted time with worse than useless GP's, dietician, psychologist etc I refed her at home and managed to get her WR with a bit of a buffer (she is 5'11'' or 179cm and was then 65.5 kgs - at her lightest she was 50kgs). I gave up my job, moved with her up to the city where she was previously at boarding school so she could keep going as a day student - and eventually got referred to iCAMHS of FBT, we came home to the farm and my husband at the weekends (he also came up to the first few meetings and occasionally after that). I was going for quick history so basically progress was very slow and very few fear foods were mastered but her weight stayed pretty much stable for about 8 months. I now see so many mistakes in what i did/didn't do - not staying at home where i had the support of my husband was one and not working through fear foods was another. She managed to convince our FBT that her food choices were HER and not the AN but i knew better - i.e no sugar, cutting out meat etc etc, eventually our FBT petered out because her weight had been stable and the therapist was just not helping anymore, convinced that d was 'better' etc and because of the bigger picture - that husband wanted me back home after over a year of renting in the city - our d got accepted back to boarding school and restarted in August last year (home in the weekends). Her first couple of weeks went really well with no weight loss, but since then there has been a very slow reduction in weight until presently she seems to be holding at around 61.5 (and getting more hostile all the time about being weighed at all). What has complicated all this this is that i was diagnosed with breast cancer just after A had gone back to boarding, had surgery etc and have just finished 3 weeks of radiation therapy - away from home because of where we live). I guess that took the focus off the continuing battle against ED, and now that I've come out the other side and looked around, what i see is a girl who is hostile to all suggestions, NOT under my control about what she's eating, someone who eats ENOUGH to maintain and who I honestly don't think would start restricting again and does not exercise but eats the same things all the time without exception. We are here together (its the summer holidays) without speaking, without me seeming to have any clue on how to restart, I'm so tired i just want to hide from her. 
I know there is no way forward apart from me getting my s... together and returning to the fight but i don't even know how to do that anymore. She doesn't want to be here on the farm, she wants to be off with her friends doing whatever she wants and is really hostile about that, she thinks that i should just butt out now and leave her to figure it out herself, and she is going back to boarding in 3 weeks for her final year at high school. She does her own breakfast, lunch and snacks and I still do the evening meal (including 1 or other of the 2 desserts that she will accept) but with increasing resistance. This is harder now too with no red meat being eaten.
I feel hopeless, sleepless, and so alone - all my friends long ago just said i should leave her to it now that she's 'well' again, that she has the 'perfect diet' etc.. I hate this self pity it's not helping but i seem to be driving her further away and sometimes i wonder if they're right.
So sorry for the big badly explained rant but id be so grateful for any insights and help with a plan that might actually work to get the good fight started again and me capable of being a decent general.
Thanks
mjkz

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Reply with quote  #2 
I can only say what I'd do if I was the same situation.  My daughter would not be going back to boarding school.  She would be living at home eating 3 meals and 3 snacks and attendance at school would depend on her eating all six in a day.  She would not be cooking for a bit and eating what I made and plated.

I'm so sorry about your diagnosis and can only imagine how this on top of it makes you feel but you are not powerless or helpless.  She still relies on you and hubby for things so you have leverage.  I did FBT with my daughter at age 21.  I paid for her car, petrol, cell phone, etc. and my paying for all of that depending on her eating all six meals and snacks in a day.  If she didn't eat what I made, she didn't drive. She didn't have cell phone or internet access.  She had to keep up with a medical team and had to do all schooling living at home.  You only have a year left to get her over this regression so I'd make the most of it. It is still possible after 18 but many more hoops and legalities.  Hope you recover fast from your treatment.
Foodsupport_AUS

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Reply with quote  #3 
Sorry to hear about your own illness and your D's continued struggles. 

My advice for what it is worth is to make sure that D is under direct supervision. It sounds as though she is in that partial recovery phase that many get to. She is able to maintain a low but stable weight, but has numerous food rules and habits that she uses to protect her illness. She is also of course heading into adulthood and your ability to get further weight gain is going to deteriorate as the years go on. Assuming she completes school would her plan then be to head off to university, again on her own? The stresses associated these changes, the potential weight loss are all tipping points for her heading backwards again. Remember this is not under her control, she may not intend to lose weight, but she is teetering on the edge of relapse. 

So if she is going back to school, she needs someone there to work with her at regaining weight. Would it be worth going back to the same FBT since she has clearly lost significant weight and probably needs to gain above where she was last year, perhaps another 3 to 5kg may be needed for her? Her fear and illness is keeping her trapped, despite her protests otherwise. 

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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.
tina72

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Reply with quote  #4 
Hi wheresmywand,
I am so sorry that you need to be here. Please so not feel ashamed to vent and to tell about all your problems. Here is the very right place to do that and we all use it this way every day!

Your d seems to be nearly the same as mine. Mine is 18 now (her birthday was last week) and WR for 6 months but there are still some Ed behaviours left (some fear food, eating on fixed times, no flexibility). We are in phase 2 that means I plate lunch and she does the rest on her own (breakfast, supper and afternoon snack) but with our supervision. I try to give her as much freedom as possible but she is trying to keep herself on a low weight and doing just the minimum. We had a talk about that on last sunday and after a lot of crying on both sides she is trying to do it better the last 2 days.

The outcome of patients with a good WR and a great variety in food is the best. It is possible to live with that state, but I told my d that if she wants to have 100 % there is a bit more work needed. The big problem with us is that d doesn´t really believe that total recovery is possible. She needs to believe me and thank god she is compliant at the moment.

We try to do a lot with incentives. She was allowed to do her driving licence after WR and she got her own car for her birthday. She loves to drive but she knows that we are the legal owner of the car and if she is not in a healthy state that will be cancelled. She finishes school this year and wants to go to university afterwards but she knews we will only pay for it and help her with everything if she follow the rules. It is hard talking to an adult d in that way like she is a child but they are only adult on the paper but inside much younger and cannot make good decisions about health. So that is sad but it is needed.

You have another year left to get her back on track. So I would talk to her and tell her that you will not pay for boarding school any more if she is not compliant about health. She is not financially independent and you can use that. Try to make her sign a contract about what you will do for her and what she needs to do for that. And try to make her sign a contract that you are legally in charge for her health after her 18 birthday (we did that on the day after her 18 birthday). I do not know how the legal system is where you live but here in Germany this is possible.

And try to do something nice with her during her holidays, something that she loves to do and that has nothing to do with food. Maybe visiting a musical or an amusement park. It is difficult with these young adults, you have to be best friend and general. You need to find a way to talk.

I send you a big pack of power from Germany!
Tina72

wheresmywand

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Reply with quote  #5 
Thank you everyone for your replies. I wish Id never stopped coming on this site. I found it after my daughter had been ill a little while and really it was the only thing that helped and got us as far as we did, but then I stopped coming on because I just felt overwhelmed - it was the worst thing to do and definitely stalled our progress. My reply has taken awhile because its hard finding the 'alone' space to do it, even now my husband has just arrived home for lunch and no doubt wondering where I am, while d is practising her guitar. 
I was heartened to hear mjkz, that you did FBT/Maudsley with your daughter at home when she was 21, and had success, your strong attitude is admirable and has given me a boost.
Maturemom, thank you for your kind wishes, I am well and would rather suffer a hundred cancers than deal with what we're all dealing with here. Its awful to say but i felt better reading that there's someone else who also didn't attack the fear foods and it does sound like our daughters are in a similar place. My daughter doesn't exercise apart from a wee bit of yoga; regarding the periods, I really don't know and I am worried - I know not long ago she was getting them too frequently but i noticed that the things I brought her last time have not been used so I'm suspicious. And your dietician sounds even worse than mine - who gave my d a sheet on what not to eat e.g. butter, saturated fats etc etc and ignored all my suggestions, in fact never even used to look at me at all GGRRR - and same here, I stopped going and starting feeding her loads of butter and cream..and hello! She did us so much harm at a time when her plan could have made such a difference.
Food Support, thank you, I think you hit the nail on the head, she is exactly at that place that you talk about - partial recovery and still protecting her illness (why??!! - i guess fear, as you say) with all her food rules etc. Your suggestion to try and return to the FBT is a good one and its going in the plan. I do hope we get a different therapist though, I need someone who actually knows that choosing to cut out whole categories of food because they're 'unhealthy' is not helping our cause at all.
And Tina, thank you so much for your power pack and love, I felt it arriving to me in NZ all the way from Germany, and i really needed it. I really like your incentives ideas and I have a lot of those to work with and they are going in the plan. Our daughters also sound similar although I think my daughter does know full recovery is possible, its just that i really think she doesn't want it or is afraid of it. I want to discuss the car idea with my husband but i think its a good one. I'm trying to think of something fun for us to do together, am still physically low on energy and we live so far from anywhere but I will think of something.
Since I wrote I haven't done anything except read and think about your replies, and work on getting our relationship back to friendly. The atmosphere in the house has definitely improved so thats a start. I now need to work on a plan and all your suggestions and encouragement have helped a lot, I've started to write down a few things but am still not ready to actually spring into action because I don't know what the plan is apart from to open the dialogue about the apparently non-existent AN, and that partially recovered is not recovered and to be ready with some leverage, food challenge ideas, and as you say Tina, possibly a contract. My biggest thing is that i feel so bad because I basically stopped even offering or trying fear foods  - i became afraid of what ED was afraid of and just tried to keep weight on but also keep my d happy and not angry. So it's trying to start all over from that position ...
First of all, I think I need a current weight to see what we're working with. Getting that in itself obviously will be my opening for what comes next and I will need to be ready at that time with my plan for more FBT, food challenges, weight increase, incentives etc..
I am so grateful for all responses and although have nothing to report yet, at least i know what has to be done. Thank you
wheresmywand

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Reply with quote  #6 
By the way, one of you asked if D is going to uni after this year - yes she is, but is now thinking of taking a gap year first. Her BMI at last weigh was 19.05 and at her best weight was 20.5
tina72

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Reply with quote  #7 
Hi wheresmywand,

"And your dietician sounds even worse than mine - who gave my d a sheet on what not to eat e.g. butter, saturated fats etc etc and ignored all my suggestions"
Bad help is often more worse than no help. A team who would cut out food because it is "unhealthy" has not understand what is the problem. I had to tell my d a thousand times that there are no "unhealthy" products as there are no "bad people". It is all a question of disease and amount. It is unhealthy to eat only chocolate but it is as unhealthy to eat only salat. The problem is the black and white thinking of AN patients.

So try to find a new dietitian and a better therapist but if you do not get better help, don´t panic. With the help of the wonderful people here you have always a "team" in background for plan B, C, D...We have no dietitian or therapist at the moment because Germany is nomansland for FBT and we just do it learning by doing and it works. If you understand what the disease is about and try not to be afraid about it you will get that.

"I'm trying to think of something fun for us to do together, am still physically low on energy and we live so far from anywhere but I will think of something."
It does not need to be a day trip or something exhausting. Maybe you can think about colouring a room in the house or buy some new furniture and she can join you to choose the colour or help with painting. My d loves to do something for us because she feels still so guilty. Ask her to help you with the laundry or in the garden. The important thing is to do something together which is not about food and you can have some nice time together again. ED seperates so much and tries to get a wall between you and you need to tear that wall down again and stay in good contact.

"My biggest thing is that i feel so bad because I basically stopped even offering or trying fear foods  - i became afraid of what ED was afraid of and just tried to keep weight on but also keep my d happy and not angry."
Don´t feel bad about that. We all make bad decisions. There is nothing lost and you can change that. I can understand that totally: you get to a point where you think if this is the state for future I can live with that. She is not dying and she is happy again. But we should not be content with 80% when we can get 100%.

There is nothing lost. You can go on fear food and you can fight the rest of ED. We are all here to help each other.
Ask whatever you need whenever you have some time.
Tina72
mjkz

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Reply with quote  #8 
Quote:
i became afraid of what ED was afraid of and just tried to keep weight on but also keep my d happy and not angry. So it's trying to start all over from that position ...


It's hard when you want to build a relationship but you know she is going to get angry about food and weight gain.  I had to look beyond my own wants (i.e. a good relationship now with her not angry) and look at what was best for her in the long run.  I got to the point where I was fine with no relationship at all if it meant that she was still alive and thriving.  You will have to scramble a few eggs to make an omelette so she will be angry in the short term.  You need to look long-term and rely on those of us who have gotten through and can say our relationships are better than we could ever have imagined and far better than they ever would have been if we had not faced the monster head on and broke a few eggs.
wheresmywand

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Reply with quote  #9 
Yes you are so right mjkz, i know it now, and i did it all once before and made good progress (i did challenge foods back then, slowly I'll admit but always some small progress being made) and had a really good relationship. But then she went back to boarding, I had my treatments to get through, and now is so different to then, she has decided she cant wait to be free of us etc. I just have so much dread I'm not even sure its warranted but the stress i feel at the moment makes it hard to breathe let alone tackle what i should say - i really am not always this useless but at the moment i seem to be. Now I've just come home from watering a friend's garden and there is a note saying she has gone and will be back tomorrow and that she has taken food. Husband thinks this is fine. On this farm there is a million places she should go and i don't know whether to leave her be and take the chance to try and get my husband on board or try to find her. Some words to start this most important discussion would be most helpful, and thank you so much for replying, i appreciate it.
sk8r31

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Reply with quote  #10 
Sending warm thoughts to you during this challenging time.  It is indeed as mjkz and others have said; your relationship with your d will improve once she is well along the recovery path.  It is so difficult to weather the storm that ED brings to relationships, and I remember well the dread of facing a d who was seemingly always angry and bitter.

However, the relationship with my d is now far beyond what I imagined it could be when our family was in the throes of ED hell.  You've got to draw strength from the fact that you & h are doing the toughest job ever to get your d back to a healthy place.

And I do believe that presenting a united front and getting on the same page with your spouse is a critical piece right now in the steps forward to help your d.

Practice good self-care as well; you need to be in the best possible physical and mental shape to continue to help your d.  Whatever you need to do to keep yourself in 'fighting form', please take at least a few minutes a day to nurture yourself.

Hang in there,
sk8r31

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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
mjkz

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Reply with quote  #11 
Looking back, it was probably easier on her to have her boarding while you had your treatments.  Like an ED, cancer affects the whole family and she is probably as stable as she has been due to the decisions you made then.

wheresmywand

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Reply with quote  #12 
Thank you sk8r31 and Tina, I'm sorry I never replied to you.

Ive been reading other posts and see that this feeling of utter terror that I have is not uncommon and that makes me feel better. My daughter returned this morning from her little impromptu camping trip last night, and ate her usual pretty good breakfast of oatmeal a banana and some full fat yoghurt and milk. I was worried sick last night and cried myself into someone who looks a decade older today, but it did give me and my husband time to talk, and once we got past the blame game, we decided we'll weigh her today and start the conversations we need to have. I'm constantly running over this in my head and am afraid but i guess it will just all come out however it does, and at least it will be the first step. But I only have 2 weeks, and some of that is already taken up with long standing plans. I have in the back of my mind mjkz's suggestion that she shouldn't go back to school at all, but we both think we will just keep that up our sleeves for now and if we can't get the weight gain that we need, that is our back up.

I'd love to hear any suggestions on a plan to restart fear foods, it is that that seems so monstrously challenging to me ... if i think of all the things that need tackling i feel I'm going to implode. Has anyone else been here and how did you handle it. And any other suggestions to just get started would be much appreciated. Tina i loved this and have saved it for use, it is perfect - 'I had to tell my d a thousand times that there are no "unhealthy" products as there are no "bad people". It is all a question of disease and amount. It is unhealthy to eat only chocolate but it is as unhealthy to eat only salat. The problem is the black and white thinking of AN patients.'
Thank you again and any more suggestions or responses would be welcome 
wheresmywand

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Reply with quote  #13 
Sorry, another question: Has anyone out there had success with getting a vegetarian (only since ED, half way through last year - but not full vegetarian, eats chicken (reluctantly) and fish). It is the number one thing my husband blames me for - "letting' her become a vegetarian, and he seems to think its the major problem and the root of all evil.  It was when we were living away from home so she could go to school so he didn't see how I kept trying, but i do believe that if he was there it wouldn't have happened. I personally don't see it as a top priority and Id be interested to hear what other people think about this. Also, I eat very little meat myself and have always been that way so I can sort of relate to it nd that's why he says its my fault. 
Thank you again
ed_newbie

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Reply with quote  #14 
Have you considered sitting down with her and writing down a list of all of the favorite foods she enjoyed before she started to restrict? Then talk about how nice it would be if she could enjoy these foods again? Keep the discussion light and friendly.

If she picked 2 or 3 from the list to challenge her fear then agree on a reward for a successful challenge - something she would enjoy? This approach seems work well with younger ones but the rewards can be tailored to her interests at her age.

Perhaps if she can remember how much she enjoyed these foods growing up she may be convinced to give it a try, with the reward as added incentive.

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"Lineage, personality and environment may shape you, but they do not define your full potential."    Mollie Marti  

ed_newbie

15 yr old d diagnosed with AN late December 2015 at the age of 12 after a 23 lb weight loss during prior 3 months. Started FBT/Maudsley at home on Christmas Eve with support from amazing local nutritionist specializing in ED and trained in FBT. WR Feb 2016 and pushing our way through puberty and rapid growth.
Torie

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Reply with quote  #15 
Quote:
Originally Posted by wheresmywand
It is the number one thing my husband blames me for - ... that's why he says its my fault. 


I would really encourage your family to stop playing the blame game, tempting though it may be to continue.  Going round and round trying to figure out what you've done wrong saps your energy and drags you down at a time when you need all the energy and "upness" you can muster, and it really doesn't matter whose fault anything is anyway.  The only one who gains from the blame game is ED, and surely that's not what anyone wants.

If I could buy a ticket back in time to mend the errors of my ways in a timely fashion, I'd be glad to do so, but since I can't, the only direction available is forward.  So I suggest you figure out what needs to happen now and in the future, and leave the past where it belongs (in the past).

Just my two cents.  xx

-Torie 

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

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Reply with quote  #16 
Wheresmywand - my son decided to go vegan some time after weight recovery (around 9-10 mths later I think) - and his dad, with whom he mainly lives, is vegetarian.

Some of my views on this as a long term situation, I posted about recently, however during re-feeding this hadn't come up and we had a strict protocol for meal plans whereby he didn't get involved in food decisions, all he had to do was eat the meal. 

You and your husband need to muster all of your strength to have a strong and unrelenting front against your D's ED at this point when she at the risk of relapse from weight loss.    Personally a quite forceful approach may well work, as it will help your D fight the ED if you are fighting it too.

I would be saying, that you are not even going to countenance vegetarian or any diet that restricts food groups, while she is underweight.   It doesn't mean you have to make her eat a lot of meat, but she shouldn't be thinking about banning whole food groups from her diet as her priority is to get rid of ED symptoms.  You don't want to go down the road of having vitamin supplements because she isn't eating a balanced diet.  

Parents can still be massively influential, if you point out that you are taking this stance because you have serious concerns about relapse, which could wreck her life etc.   Tell her there is no other way to recover fully other than full nutrition, facing fear foods, and being of a sufficient weight that her body and brain can have the energy and fuel that they need to rebuild, and that it takes months if not years for this to happen.

She may not realise what is happening to her, unless it is pointed out.  Don't be scared of the ED, it is like a bully - if you are fearful it will win. If you confront it and refuse to allow it to dominate, that is what your D needs. 

It seems that unless you have access to a top quality residential facility, then it is only parents that can really do this important work against ED. From my own efforts I can see that parents can have a vital role - even now my son is a few months away from his 21st birthday.  He appreciates my constant coaching and support, and he trusts my judgement now.

Keep strong 
Seabird 





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Mother of 20 y.o. male diagnosed at age 16 with RAN, exercise compulsion, anxiety, depression & SH, FBT 4-5 mths to WR, WR now 3 yrs; suicide attempt 4-6 wks after WR,  IP 4 weeks.  Steady progressive recovery over past 3 years including support from psychologist on general wellbeing. Slow steady steps to success!! 

When your last bow is broken and your last arrow spent, then shoot, shoot with your whole heart
 [Zen saying}
wheresmywand

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Reply with quote  #17 
Thank you newbie, Torie and seabird for your excellent and helpful replies.
Torie, you are right, my husband and I do need to be united and I think we are now but he does like to throw that at me when asked for his input, it's ok i know its just his way and while not actually very helpful or actively involved during this at least he's always there and always consistent and I appreciate that.
Newbie I have done exactly what you suggest, I resurrected the old 'incentives/rewards/positivity' whiteboard that I used during her initial re-feeding at home in 2015 and wrote out what is essential - minimum weight of 65.5kgs, continued systematic challenging of fear foods, snacks must be minimum of 200cal, regular weight, Mum in total charge of dinner and dessert etc and wrote out rewards - the main ones being that once she has gained to 65 kgs we go out to beach house every second weekend from school, she has a lot of friends out there and loves it more than anything else, and every 3 challenge foods that she can fully master/incorporate into her diet regularly (as she will often have something that's put in front of her but then next thing she's not eating it again) then we will put $100 into a special 'car count' for her. Ive written a beginning list of fear foods but it made me feel sick writing it as I cant ever imagine her eating some of the stuff - crisps and chocolate for example. And I do wonder if never eating crisps again is the end of the world? But at the same time I'm happy to lean on and trust those of you who have done it before me and had success, so on the list it goes.
Seabird i really found it helpful how you talked about not cutting out any food groups and full nutrition is absolutely essential - I will gladly use those words, I'm pretty sure red meat will never be eaten again but I'm going to try having it just as an every-now-and-then health boost/restaurant choice type meal.
Anyway she came in in the middle of me writing out the board and looked quite excited by the rewards. She vehemently disagreed about her progress stalling though but I just chose to ignore that. We didn't really go over anything I'd written yet though as Id rather wait for H to get home to tackle some of the things she'll hate (weekly weighs, fear foods etc) together.

Foodsupport_AUS

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Reply with quote  #18 
Great job wheresmywand. She at least has the heads up that you are serious about this and getting things happening. 

My D became pescatarian during her illness. (Fish/lacto-ovo-vegetarian). There was a long battle against this, but it is something that now after 7 years I have come to accept. Although I don't think it was helpful towards my D recovery I also would say that it was not the sticking point that caused her to be unwell so long. My D was a hospital inpatient at the time and no matter what, she would have supplements of higher calories, but she would not eat meat. The hospital had the policy of allowing three food dislikes, and she ended up with beef, lamb, pork, chicken. D had been very animal centred for a long time, never keen on meat when well and was insistent this was animal centred and not her ED.

7 years later she admits that there was two components, part ED but also still very animal welfare related. She has eaten meat by accident on occasion, no issue, and will now eat meat if there is no other option provided as a guest. She otherwise eats a wide variety and has not tried to cut back on fish. 

She is now studying to be a vet and I can't see her returning to eating meat after studying animal production, some of the things she has witnessed are very concerning. That being said she is working hard on recovery and is slowly but surely doing much better, and I am sure will get there. 

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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.
tina72

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Reply with quote  #19 
Hi,
to answer your question from my little experience up to now:
1. fear food: some here introduce it after WR, some do it from the beginning - nothing is right or wrong, you need to find "your way".
We did it that way: after WR I told my d that it is important to tackle fear food for recovery and I asked her to make a fear food list. There are 3 parts: one is "I will never eat that", one is "I would like to eat that again, but not at the moment" and the last is "I would try to eat that in the next time". There had to be at last 3 fear foods on this last part. I told her that we would have 1 fear food a week from that part and after this part is empty there some food of the second part "I would like to eat, but not at the moment" must move to part "next time". When you reintroduced a fear food make sure that you do it again in the next weeks so it becomes "normal" again. The goal is to work us through this list now and I can tell you that after 6 months there is nearly only chocolate cream left on this list. I can live with that. Never eating that again is o.k. I think as long as it is only one or two things. And what is "never" with AN? I heard the word "never" so often in the last year and 90% oft it is o.k. now.
2. vegetarian is possible if she eats fish, eggs and milk products and you should not blame yourself, you thought it would help her to eat. If she eats chicken, too, that is totally o.k. I think. Big problem is ovo-lacto vegetarian or vegan. Stop that blaming and looking back what you have done "wrong". That does not help you with progress. Look forward and set goals for the future.

Your incentive list looks great, I am sure you can get her with that!
Tina72
sk8r31

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Reply with quote  #20 
Good job wheresmywand, you have resurrected the 'white board' and lists of incentives and rewards, and that sounds like a big step in the right direction.

We had the benefit of attending a wonderful 5 Day multi-family intensive program when my d was 17, after being ill for 3 years.  One of the most important things that happened during that time was my h's ability to really understand what our d was going through, and to grasp the science behind the development of an ED.

The next important piece that we gained during that week was how to write a contract specific to our d that would help her towards WR.  As she was 17, we involved her in the writing of this.  Fear foods were a real issue, so we had d come up with a 'top 10' list (incredibly difficult as you might imagine...the list was miles long).  We served something from the list every day, though not always the most difficult item.  There were financial incentives for being able to 'strike a fear food off the list', which meant it had to be eaten at least 3 times in a row without comment or complaint.  Once all fear foods were off the list, d received an iPad, which was the thing that she had identified as being most desirable (and which we were able/willing to provide).

A very specific contract, also containing consequences for meals/snacks not eaten, was key for our d to move forwards towards recovery.  We wrote another contract after WR that was used when she went away to university.

Perhaps a contract that is specific to your d and your family at this moment in time might be a thought. I found it very helpful to have everything spelled out in writing, so I didn't have to engage in any unproductive arguing or negotiating over food/snacks.  I  was able to conserve energy for meal prep, and other daily living challenges.

It sounds from your most recent post that you are getting your 'mojo'  back.  Sending many warm thoughts and strength to you!

Hang in there,
sk8r31



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wheresmywand

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Reply with quote  #21 
Hi everyone, thanks so much for the replies, they're all incredibly helpful. Seeing how other people handled/handle this specifically i(including the vegetarian thing) is really helpful to me as I feel like I need some sort of scaffolding or frame work to lean on. Especially with no other team members involved now.
I particularly like the idea of the contract right now sk8r31 because already ED has started smooth talking his way around things, and I've fallen for it all before so don't want it to happen again.

I had the big 'board reveal' this morning and also our first (for a long time) weigh. She is 4 kgs under what her minimum weight should be. I didn't make it a big deal because I pretty much knew that's where we were, she didn't want to look so i just noted it. So - she took it all as well as can be expected and chose burritos to start with - but has been hovering in the kitchen making sure only the 'pure' spices are added to the chicken (and tried refusing to countenance chicken at all on our way home from town - especially since not free range and all about her morals etc, wanted to only have kidney beans). I stood firm on the chicken but really having only 'allowable' flavour shakers etc have become so normal that that's all there is anyway (and tbh it's what we both prefer too), so not really much of a fear food, the wraps are healthy as well and the salsa was home made so the only challenge is the cheese and that's not too big a deal for her as long as it's not too much. But it was her choice and i see that starting easy isn't uncommon. For dessert it's one of the allowed ones since that wasn't the thing chosen as FF but i did put cream in it while she was hovering which isn't part of the recipe. I guess I just want to move quicker and I can see that it's going to be so slow - a list of the things she will happily eat is quite easily do-able and rather short, whereas the other list is almost endless. I'm sorry if I'm raving aimlessly but I went off this forum last time because I felt embarrassed and inadequate and so very afraid and I'm determined for that not to happen this time so I'm mining for as much feedback as possible.
Anyway, what I think is that what I've written so far is not detailed enough, there is nothing about consequences for no weight gain and her snacks today were only 200 cal at an absolute push (fruit and unsweetened greek yoghurt) so I'm afraid she might try compensating or just not pushing the weight gain. I wondered sk8er if you would mind private messaging me with a copy of your contract if you have it or at least the main points to get me on track.

Thanks for saying i seem to have my mojo back, it does feel as though this first bit of action has released some of the dread, which has helped me feel less frozen with fear. But I am still 80% nerves.
I so appreciate all who read and contribute and welcome any further comments or suggestions to help make this stick this time.


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Reply with quote  #22 
Quote:
Originally Posted by wheresmywand
I resurrected the old 'incentives/rewards/positivity' whiteboard that I used during her initial re-feeding at home in 2015 and wrote out what is essential - minimum weight of 65.5kgs


If 65.5 kg was the minimum in 2015 (which was likely not really enough for full recovery even back then), she will need at least 67.5 now, (two years later) as teens and young adults are designed to gain a little each year.

I remember how scary it was to tell my ill d that she would need to gain a little weight every year because that is what is normal, but I'm so glad the good folks here pushed me to do that because indeed they DO need to keep gaining to stay on track.  So I urge you to tell your d the number 65.5 is not enough, and I would further urge you to avoid telling her ANY number as a minimum or target as there is no way to know how much is enough until you get there.  My d was among the many who needed to go considerably higher than anyone expected to get to a good place. xx

-Torie

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wheresmywand

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Reply with quote  #23 
Hi Torie, thanks for that. Yep i wondered about it and always did think 65.5kg might be too low (only because of being on here) FBT therapist used that weight. It is indeed scary. I might still use that weight as the reward weight since that's what I've already said (and after all it is a weight gain of 4 kgs so worth a reward) but not use it as stopping point. I think I'll just cross that bridge when I come to it because it might be too overwhelming to mention it now and she likes blind weighing anyway so. The way I can see compensatory measures coming out at the moment from her I think it will be a way off.

Hey sk8er please don't worry about sending me that contract, I guess I need one specific to us and have 30 mins to myself at the moment so will try and nut one out. You did already give me quite a lot of good starting points so I'll use those and thanks so much for that.
Any ideas how I'm going to do these fear foods when school starts again in 3 weeks and she's (by necessity) a boarder.
Thank you. This is hard, hard, hard.
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Reply with quote  #24 
Blind weighing is great, it allowed us to push past some of those mental barriers. Eventually though they will feel compelled to find out so push back can come at any stage, along with the anxiety. I would normalise the weight gain for adolescents into young adulthood. That weight which was normal 2 years ago, and possibly appropriate is now too low. One of the wise paediatricians said that no weight gain is in essence a weight loss. 

Getting her weight up and overcoming that rigidity and restriction is your number one priority. Living remotely I guess the options then become - remote education, going back to boarding, is she close enough for weekly boarding, or do you need to move. I think the chances of her doing well by herself at boarding school are non existent, so something different will have to happen. 

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mjkz

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Reply with quote  #25 
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Getting her weight up and overcoming that rigidity and restriction is your number one priority. Living remotely I guess the options then become - remote education, going back to boarding, is she close enough for weekly boarding, or do you need to move. I think the chances of her doing well by herself at boarding school are non existent, so something different will have to happen.


Totally agree with FoodSupport.  Three weeks is not enough time to do what you need to do and a good portion of your focus should be how to keep her home or if she really has no choice but to board then how you are going to get her meals supervised at school, meeting her daily for a meal so you can introduce fear foods and get things going again.  Maybe you moving closer to her school is a better option so you can have her home for meals and then she wouldn't need to board.

You will have to do something different if you don't want to be back here in a year or so and now dealing with an 18 year old who has a lot more power and can just make decisions all on her own.  It is amazing how hard things become once they turn 18.
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