F.E.A.S.T's Around The Dinner Table forum

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strawdog
Hi All

My d has been WR for about 10 months but lately I feel we are going backwards rather than forwards and I wonder if we will ever get there - wherever there is in recovery. I feel its always a constant battle to keep her on the right track and seem to be constantly pushing her to make the right food choices. In a lot of ways I think she is just a typical 17 year old teenager wanting to make her own choices and not have her parents tell her what to do but in other ways I can definitely see her ED on her shoulder. She is allowed to exercise but only if she eats the calories beforehand but this morning I know she hasn't had enough extra before she goes out for her run but If I confront her she will get mad with me. I know that is ED behavior but I can't constantly watch her at 17 to make sure she eats what she should - she'll be an adult in October ! She will always pick the lowest calorie option still and her snacking in between meals will get dropped given half the chance.  She can never see that she is different from her sister and/or friends in that she is in recovery from an awful illness and therefore maybe has to eat differently in order that she doesn't regress or lose too much weight. She is back at work waitressing doing long shifts and then still wanting to run on those days. I know she wouldn't eat enough to compensate. I know she is going to lose some weight this summer with how she is operating but I don't know whether to weigh her in at the end of August to show her that she has or just leave it and see if it comes up in the winter. Camhs said not to weigh her post discharge. I know work is good for her as it gives her a sense of purpose and I know on days when she runs she feels better. When we were in lockdown her ED came back a bit - i know because she told me which was good - she said she has too much time to sit around thinking and self analysing. Now she is busy again she is better overall mentally I'd say but not making the right food choices at times. She wants to go to uni the next academic year but she is no way ready to make sensible choices with food as it stands. Personally I feel damaged by her ED in that I can never let go of the worry of it coming back - I can never let go of her to full trust without overly worrying and feel that will always be the way. I know Covid has made so many things much worse but sadly I think it's set her recovery back hugely as well. I just need some positive hope that this isn't as good as its going to get with her and food and that I shouldn't be intervening more to control intake and monitor weight. She has told her sister that my controlling her is holding her back from making a full recovery - perhaps she needs to make mistakes to become fullly self sufficient? 
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melstevUK
Hi Strawdog,

Is your d still under the supervision of CAMHS or was she discharged?
Unfortunately I wish they would stop using that term 'weight-restored' as a patient will interpret it as not needing to put on any more weight when in fact there is more weight and growing needed right into the mid twenties.

From what you are saying the ed is starting to take a bigger hold again and it sounds to me as if your D's weight needs to be pushed up again. You are not being controlling' - you are being vigilant and very sensible in being so because it is very easy for ed to get a foot back in the door without that. Would your d accept being weighed weekly again? It sounds as if this needs to happen so you know exactly what is going on. 
She will have to accept that you need to monitor her because she is unable to maintain her weight herself, from what you are saying. The last thing you all need is a relapse and it means she can have appropriate freedom on every other level in line with her age if she can see past wanting to own her recovery and actually cooperate with you. 
I would advise having a gentle discussion around trying to get her to see things  differently and that you are not controlling her at all, but helping her to gain freedom from this awful illness. 
This is a very tough time. She will recover but not in the time scale you are thinking of. She has to push through into adulthood and maturity before she will be really free of it. 
Believe you can and you're halfway there.
Theodore Roosevelt.
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HopeAtHome
My 17 year old daughter also worked in a restaurant during her illness. I thought it was a good way to allow her some socializing and autonomy and a positive motivator to get her to eat - "You can only go to work if you eat all your meals and snacks." In fact, she told me later that working in the restaurant was one of the biggest triggers of her eating disorder. She admitted that she was terrified of the food she was preparing, and it provoked horrific anxiety. Now looking back, I remember her being almost catatonic after a shift. She would not tell me she wanted to quit, because all of her friends had jobs; she didn't want to have to answer questions about why she quit her job. In the midst of a terrible, terrible evening snack - she was ranting and wailing and sobbing about how she had fallen into a dark pit, and she couldn't get out, and she was going to  die, and I would never be able to help her - I told her that if she didn't eat her cookie by midnight, she would be forced to take a medical leave of absence from work. She refused the cookie. Now, I think, by refusing, she was telling me she needed to quit that restaurant job. The next morning, she woke up a different person. She was back to her old self again, and we enjoyed an 8 day run of having her back and eating freely. Of course, at the time none of this made ANY sense to me. I can only see it in hindsight. It is July, and clothing stores may be hiring for their back- to- school shopping rush. Would this maybe be a good time to re-direct her to a different type of job? It made a world of difference for my daughter.
I am so, so sorry that you are struggling with this just as you want to see her healthy and strong and ready to launch into adulthood. I feel the exact same anxiety! Endeavor to persevere. To get her WR, you have already endured and accomplished the most unforeseen, difficult, horrible task any parent can imagine. Don't forget to express gratitude (I keep a gratitude journal) and congratulate yourself for that accomplishment EVERY day! 
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Vicky2019
I think you are doing well. It seems to be very hard to keep going when you are met with such aggression and resistance. 
I know what you mean about feeling damaged - I don't believe i will ever be able to trust my daughter again, or even forgive her for the way she has treated us during her illness.
Her brain is surely healing every day, and you are carefully shepherding her to the goal. Keep pushing, it may be hard but you are doing a marvelous job.
I found a mandela quote the other day - it always seems impossible until it's done - and that really resonated with me.
Take care, keep going.
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melstevUK
Sorry, I just reread and saw she has been discharged. Have CAMHS given you the option of getting touch if you are having difficulties again? 
Believe you can and you're halfway there.
Theodore Roosevelt.
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Enn

Your questions bring up very important points. WR and adequate WR is just the first part. The next steps are very nuanced and subtle and less defined. The goal is for them to be independent with respect to feeding themselves. At WR and even at ten months there is still a lot of growth and development both physically and  emotionally. I really do feel that they are behind their peers in maturity. Even though she will be an adult by age, she may not be by behaviours. 

I had hoped d ,when WR would realize she is not at all like her peers. She can’t just do exercise and not fuel it. She cannot just skip meals and do ok. She still thinks she can do what they do. At this time, now I would think , as a wise beautiful soul told me very recently as well, that you are trying to find a plan that helps maintain weight and not continue to gain and gain as well as trying to give some independence but also not lose. I think this part is harder and more subtle.  We keep looking at them as if ED is ever present and we want to see them as capable and far removed from ED simultaneously. I think that is maybe what you may be feeling right now? I think her behaviours are ED currently. 

So thoughts I have for you. 

Is there a doctor to tell her that she cannot lose weight? That if she does they will empower you to take charge again. Also if she wants to go to university that she has to be a healthy weight and feed herself for at least 6 months . There is a university blog for ED kids I just can’t recall if  it is from Kartini or Dr Peebles or someone else right now. It anyone else recalls, please post. Does she need to establish a more one on one relationship with a therapist to talk to her and challenge her thoughts  about other girls and exercise and her illness? To support and educate her . That she does have an illness and yes she can be ‘cured’ but that she has to acknowledge certain truths about this illness. Here i am reminded about Tabitha Farrar. Please check her blog . She recovered by herself with no family support as I recall. 


Although  You state she picks the lowest calorie items does she sometimes pick higher calorie items too? Are all fear foods being eaten without anxiety? If not , there is still work to do. Sometimes I feel my d is not picking a good snack like an apple with peanut butter, she may pick an apple with cinnamon sugar. The therapist pointed out that if it were truly Ed there would be no sugar and she would not eat it all. She does eat it all. It helped me with my frame of reference a bit.
Not sure if anything is useful here, just my thoughts on your concerns.

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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LaraB

https://www.kartiniclinic.com/blog/post/going-off-to-college-with-an-eating-disorder-4-tips/-with-an-eating-disorder-4-tips/

https://www.eatingdisordertherapyla.com/is-your-young-adult-with-an-eating-disorder-ready-for-college/

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deenl
https://blog.drsarahravin.com/depression/leaving-the-nest-10-tips-for-parents/
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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
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deenl
Hi straw dog, 

I am in the same situation. My son remains well mostly because I am still the one shopping and cooking, whenever he has freedom to choose he makes poor nutritional choices too low in calories, he resists guidance on food choices and is going to university in September. He mood is great though.

I think we are navigating many adjustments at that same time. The normal change that occurs as your child transitions to an adult, the normal changes surrounding our kids moving on to third level education or work and, for us, the change from being in charge of food to our kids learning to nourish themselves. No wonder we are feeling at sixes and sevens! 

I am taking a few weeks to think about the way forward in my family. I will post my musings when it's not all a big jumble in my brain! 

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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
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strawdog
Thankyou to everyone for your replies - it always helps to know there are others out there who can connect with what we have and are still going through - EDs experiences are so hard for other people to relate to. Yes she's been discharged from CAMHs - way too early in my opinion but they are overwhelmed ad under resourced so I can understand why. For them it is ok for them to be almost better and they shrug off the last remain g ED behaviours with a kind of - oh well you can'thave it all kinda attitude. But you wouldn't discharge a cancer patient who wasn't 100% all clear would you. There's no link between childrens mental health and adults. They talked about not weighing her after because it wasn't necessary and reinforced that they still had an ED . Again after an all clear from any other illness you would have regular check ups in the first year after to make sure there was no remission. But after CAMHS there is nothing - they let them go and have no idea once they become 18 how may regress due to their system and this is so wrong! Yes I can still contact her therapist and I did at the start of our lockdown as she had admitted her ED was back a bit - the therapist rang her and as always she played it down quite a bit and made out I was being overly worried and the call finished with her and that was that.  The conclusion was that lockdown had had a massive effect on EDs and caused serious regressions and that our was minor so not to worry about it so much. Yes I get she hasn't had a full blown remission but it's still very hard to see them sliding back at any speed when you've been through so much to get to where you are.

Enn you say:

"We keep looking at them as if ED is ever present and we want to see them as capable and far removed from ED simultaneously. I think that is maybe what you may be feeling right now?"

This is 100% me - if she is happy after a run or a day out with friends I'm  desperate to be pleased for her - but I just think she's happy because the ED is happy  - maybe she' skipped a snack or run a but further than normal! Will I ever stop feeling like this and just be pleased she's happy? I don't think I can be until I can see her eating that chocolate and really enjoying it - wanting her pudding because they're nice -and hey who doesn't like ice cream! But she's not there so I can't let go of my ED fears with her.

In the UK once you are discharged from CAMHS you're not  assigned a doctor to monitor her post discharge. I can book to see a doctor if I am concerned but with COVID this is much harder. Also to book her in would be a huge sign that we think she is failing. This sort of system needs to be in place at the outset,

"Although  You state she picks the lowest calorie items does she sometimes pick higher calorie items too? Are all fear foods being eaten without anxiety?"

It's not all bad but on the whole it's no to these questions. She had dome Orios with her pudding for the first time yesterday which was great but things like ice crea still give her anxiety - we have a lot of I refer sorbet or I really like this ot that and it's always lower calorie options. When she cooks its always prawns and noddles and never anything 'unhealthy' in her eyes. We still plate up 99% of her food though so on days when she runs and I know she's not eaten enough extra beforehand I make sure we have a big dinner. But this is not teaching her that she is not eating enough to do the exercise she does and therefore become independent. I think the only way to show her is to say we are doing a 3 month post CAMHS weigh in just to check she is doing OK?
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strawdog
Tnanks deenl - I think you are right! Good luck also
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mfab12

Hi. 


I'm in a similar position my d is 17 and goes to University next year. I can feel my ability to influence and control the situation is having to transfer to her taking some responsibility for recovering, which is not always the case. 

I found online (and adapted) 'are you ready for University' checklist/questionnaire - I can't remember the site but found on a Google search. I asked her to put next to each one if she thought she ticked it, partly or not. It was insightful for me to see what she could admit to what is still problematic for her. 

She started watching megsy recovery and what Mia did next you tube videos... She seemed to really relate to these people. She has now just agreed to start some private CBT E sessions (she had previously disengaged with camhs) to work on what needs to happen before next year. I'm realistic that this may not be the final step needed but it's some hope.

So I'm passing on my hope to you... Stay strong, it's so difficult, take care x

 

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strawdog
Thanks for that. I’ll take a look. We left her tonight and came back and checked her internet history and she has been watching exercise videos. It’s been about a year since she’s done this. She also halved her evening snack. She is regressing and I don’t know what to do - I’m so upset because I know to get through this is going to need a big blow out in terms of a conversation but maybe that’s what needed?! 
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Foodsupport_AUS
I think inherently most of us dislike confrontation. Letting our loved ones know that we can see they are struggling when they may or may not admit it to themselves is hard. We don't want to go back to where we were and we don't want to have the confrontation. Not addressing it though means that we are allowing things to go backwards and not moving forward. I found with my D that I had to choose the place and time to deal with these things. It is often not well received but resetting the boundaries and guidelines can help them move forward. Often they don't want to go back to where they were before but they skirt on the edges because it feels more comfortable and less challenging than having to push too hard against their ED thoughts. 
I found when my D was in a better space it was useful having her read Decoding Anorexia. She is keen on science anyway and it really helped her see why I kept on pushing so hard for nutrition as the basis of her recovery. It felt more like we were starting to work against ED together after she read it, though still not always. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Enn

I am sorry strawdog. I do think ED is quite active and no matter what her age, you need to step in and help/support. I do wonder if she was properly WR as well. 


Sending my best

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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PurpleRain
Hi strawdog. We have a similar timeline. my D has been back to her growth curve plus cushion for a year. I agree that lockdown and covid have made things, including recovery more difficult. My D is younger (she'll be 15 in September), so supervision it's easier and because of lockdown we have been together most of the time. She is doing well food wise, she can choose her snack and eat it semi supervised (there is always someone around but not always directly watching), she can eat "extra" treats and has told me something is yummy or she fancies something specific. BUT younger s told me she threw some vitamins in the WC the other day (and I believe him). Every time I think she is doing better (and she is) something like that happens. Even if she grabs an extra treat I freak and thing maybe she is bingeing, or purging (she is not, she never has to my knowledge and I've been watching her like a hawk for almost a year and a half). She was doing so much better socially before covid, and now she has the perfect excuse, so I worry. She is going to start high school in a new school in September, and I worry. She is doing well state wise, but out of the blue she has a meltdown, and I worry. It's exhausting. This stage, whatever it is (not really 1 not really 2) is HARD. My D doesn't talk about ED, sometimes indirectly, she asks if she can do this or that (can I not have my shake when we go on holidays, for example), so I don't really now how aware she is of her recovery. I was checking CBT therapists when covid arrived, so I never got to make any calls or appointments, I think I would look into it now. Sorry, I'm rambling.
I hope you can turn this around quickly, and that your D can put on the weight and go to college soon. You can do this!
13 yo d started to eat "healthy" September 2018, she had a growth spurt a bit later, followed by tummy bug. She started restricting breakfast and school lunch in January 2019 (that we know). We succesfully refed at home.
I have found inner strenght, patience and compassion that I did not know I had.
Never retreat, never surrender
keep feeding
 
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mfab12

Hi. 


I feel your pain. We have been yo-yo ing and I've found exercise being a real indicator to how she is doing. My d was really sporty before so it's difficult to manage. I've been quite strong against her exercise but Joe wicks PE lesson kicked off a set back here in lockdown. Started out as her and friends doing it together 'just a fun primary school online pe lesson...' where 3 days later her friends couldn't be bothered to get out of bed (normal for 17yr Olds) and 4 weeks later my d can't do her day without it and was coming out of it like she had run a marathon. We knew we had to face it head on and yes there was explosions. But she stopped (6 weeks ago) and she knows at the moment she cannot do any intense exercises at all... She does walk quite a bit mainly with friends but I'm hoping the CBT E may help.. We also had to have serious conversations about her University courses - linked to sport which is sad as she does have a passion for it but again (I think someone on here said a while ago she should do something different and I wasn't ready to hear or accept that) but after some Frank conversations and looking into other options she is choosing a different path which is the only way to have a chance not to trigger into a relapse when away.

I've found the best thing I've learnt recently is my d and I text so much better than we can talk about anything to do with ED. So at night I will text her links to things I've found and text how well she is doing and must be very difficult. We will always Love her....etc... But I also text her when I told she had to stop Joe wicks workouts... 

It is difficult and don't forget you need support too, it's hard to accept they are going into adulthood with this and feeling like the Ed is still in the background and is waiting for you to take your eye off the ball so it can step in. I've found that a feeling of huge responsibility myself, but many many people do recover, she can, and we Can't be fully responsible for when that is but just do what we can whilst we can.

Take care and good luck

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strawdog
"Often they don't want to go back to where they were before but they skirt on the edges because it feels more comfortable and less challenging than having to push too hard against their ED thoughts."

Enn - This is true 100% ! She thinks she can live with just a bit of her ED - it's not a conscious choice I'm sure - the ED wants back in and is relentless and she allows it back to a certain degree because as you say it's easier than fighting it off. Exercise and restricting is her safe place - where she has control. It's why she went there in the first place after bullying at school and now with the Pandemic and the world such a frightening place she is regressing back into a bit because it makes her feel better. I don't know how we stop this happening - it's like whistling into the wind. 

"She is doing well state wise, but out of the blue she has a meltdown, and I worry. It's exhausting"

PurpleRain - yes it is exhausting. Just as you get yourself to a good place thinking they have it under control you have a setback and all the anxiety and worry returns. I thought she'd kicked the secret exercising - id even stopped checking her history when she was out and I was so pleased but I just had a feeling when we were going out last night. you get that sick feeling in the pit of your stomach when you realise - its back!

mfab12 - dodn't get me started on Joe Wickes!!  Lockdown was bad for ED sufferers especially those with exercise compulsions - every day the media going on anout not getting fat during lockdown and you must exercise every day. Its 100% the reason this has come back for my D - she didn't do the JW classes but did walk every day during lockdown just to get out of the house but then it became a ritual. Then she ran once a week with her sister but that wasn't enough - she pleaded to do a home workout as well. I got her a punchbag to try and make it fun and said she had to workout with her sister or someone else - but then it became an hour session with HIT exercises and ab crunches and so on - what she used to do at home in secret, It's doing this again that has triggered her I think.

But without doing any of this I think her mental state during llockdown would have plummeted and then you're looking at depression. I tried to get her extra thereapy ehilst at CAMHs to confront the anxiety and low moods but she refused. You can't force them can you 🙁
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mfab12
It is so difficult when they wont engage. My D really didn't engage much with CAMHS at all, and what they did offer has sadly been not very helpful or supportive.

I would keep offering at intervals different types of support, I am sure my D wouldn't have tried the CBT-E if she hadn't seen the you tubers we found and they had recommended it. Do you feel you could you pass on links of some people who she may watch to your D?, because she may be willing to watch them, even if she isn't ready to talk about it. I think I said in a post earlier 'what mia did next' 'megsy recovery' and 'Tabitha Farrar' - Tabitha is an adult recovery help, I started showing this to my D saying she is getting to that point now and I think this has helped shift some of the responsibility to her to challenge it. - I had the discussion with my D about watching anything that could be triggering or unhelpful (there is so much online it is scary) and she agrees to let me know who she is watching and I watch them too so I can check. It also has given me an insight to her world and the battle she is facing.

I am not sure if this is helpful in anyway but I hope it may be. Take care
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strawdog
yes please do pass on some links 🙂

yes it's a difficult world for a teenage girl image wise for sure
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mfab12
What Mia did next:
https://www.youtube.com/channel/UCTvnKA-Oef-wruoTQ3SsLFA

Megsy Recovery:
https://www.youtube.com/channel/UCey1WBhNthBx0vDy-pHe9uw

Tabitha:
https://www.youtube.com/channel/UCa7G1P5WQopVMc9qTSP_lgA

Hopefully these links work - I would recommend you watching a few of the videos and see if you can find a topic that she may relate to and then maybe send her a specific link to one. e.g my D never purged and although what Mia did next, part of her ED was purging and nearly all videos relevant to my D, I know my D would have been more likely to not continue watching them if at the start she had watched one video which talked a lot about that aspect - not that many of them do (I hope that makes sense) but I chose an exercise one to send. I think it is really useful for them to feel they can relate to a person, and at the moment we are the 'bad guys' trying to control their lives, it can be refreshing when the messenger isn't always us!

good luck
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strawdog
Thanks for these - I like the Tabitha video - Semi Recovered vs Recovered and I've sent that to my d and asked her to watch it and then said we could have a chat about where she thinks she sits on this. ALso the Megsy video about lock down and EDs is good and was definitively the start of her going backwards so hopefully she can relate to this. Forwarded both to her so we will see how she resonds  
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strawdog
so she just left for a 5 hour shift as a waitress and has not eaten her normal meals and snacks. She had a small bowl of porridge and half a banana for breakfast, then ad her main meal at lunch - fish and chips - standard portion but maybe a bit less than she should and a very small bowl of yogurt and fruit (she is struggling with desserts and if she plates up herself they are smaller and smaller amounts) This afternoon she walked for an hour and then had a ham sandwich before work. We told her she needed a snack and some crisps but she deliberately left everything too late to make sure she could use the - i've run out of time trick. After work she will hopefully have a 300 cal snack.  do you think is enough as I don't! 🙁
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mfab12
It does seem a red flag she is trying to restrict and obviously battling. I find pre made yoghurts - crunch corner ones etc that are already portioned up are easier as they are not having to make that decision how much. I know long term that's not the goal but the need to make portions smaller seems strong for her at the moment.

How strong do you think you can be about this with her? have you discussed the possibility of her not being able to go to uni next year? I had some direct conversations and texts with my D saying 'I know its hard but if you think you can 'coast along' like this and go away next year its not going to be possible'  but if she starts really getting help now there is the possibility etc. I was trying to tap into any motivation I could find...she has recently acknowledged the ED and I feel that has shifted things an inch forward.

Does you d acknowledge she has a problem? I am not sure what other peoples experience is about how important that acknowledgement is??
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strawdog
yes the corners are a good idea - we used to have them so will go back - she used to leave more and more of the fruity bit I seem to remember though. Well yes it all came out in the car with mum on the way to work this evening - bit too much too soon I think but the summary being -we know the ED is back and we can see you are not making good food choices - we need to have a big talk about it and yes if we don't think we can send you off to uni and trust that you will not start restricting again then yes uni is a problem - the reply - i swear to god if you're going to say I cant go I will leave home!! So didn't go so well ! Hopefully it will calm down this weekend and we can have a proper chat but I'm not holding my breath 🙁
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