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CED123
Dear All

It has been a while since I posted so I thought I would update you. D is WR (since marchish) and being discharged from IP next week after a few weeks at home. Positives are that she has had cheerier times (we had some green days) and has stuck to her plan while at home and still supported by IP.

But the big negative is that I expect that all to stop next week and the proverbial to hit the fan. She has stopped seeing friends again (as she feels too fat), and plans to restrict breakfast and lunch once discharged and not stick to her meal plan.  I will of course keep dishing up the plan but we know from experience actually there is bugger all I can do to get her to eat.  It's like watching a car crash arrive in slow motion. She is going to throw away any prospect of getting into sixth form and then next year will be a motivation-less wasteland. Oh, and she plans to a) cut us out of any medical info by invoking her right to confidentiality and b) self discharge herself from camhs.

I know a response might be why not fight to keep her from discharge but actually I don't think that would make any difference either - she's just eating to get out and lose it all again.
Currently no light; only tunnel 🙁
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Vicky2019
this sounds very scary to me. you need to let the team know to see if they can extend the ward leave for a bit longer. or at least have a strict plan about monitoring and criteria for readmission.
Has she spoke to any friends by remote  call since admission? might be helpful with a trusted friend maybe? might settle that anxiety a bit.
I am so sorry for you, I hope there is a solution to go forward with.
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CED123
She will still be under the care of a camhs team. Timing cant be changed as trying to get her to stick to plan to get signed off as fit for sixth form. If it gets delayed then all is lost anyway. I can only hope that she either fails fast and gets readmitted, or fails slowly enough to get to sixth form and finds some motivation from seeing others have fun. But i guess given the anxiety others' fun might not seem like fun to her.
She is still talking with friends via social media. 
Currently no light; only tunnel 🙁
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Nicstar4
I am so sorry to hear this. I hope that she is less able to carry out her threat of restriction when she gets home, and hold the light of hope for that for you. How often is she due for review after discharge? How soon is sixth form starting?
thinking of you In this extremely difficult time
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melstevUK
Hi CED123,

This is so difficult.  Is it possible to arrange with the unit to keep the bed open for a few days so that you can march her straight back if she does not comply? I am wondering if she senses your defeat before you start on the return home and am trying to find ways of strengthening your side in this battle. 

She says she is going to lose the weight so the illness is still strong. What does she want to do in the future? In the longer term? What do you think will motivate her not to go right back downhill again?

When my d was first ill I laid down in no uncertain terms that I would give her all the support I could but that she was not going to spend her life being nothing but an eating disorder and that she had to make a huge effort to fight it. I wonder if you can say something like this to your d, which puts some onus on her to start to move away from the illness. Just stating that you will not put up with her refusal to even contemplate getting onto a recovery journey may help in some way. If you can get the force of your feelings across. It did not stop my d from needing three hospitalisations and taking many years to recover. But she did fight very hard to keep her life going and get the qualifications she needed for becoming a nurse. You need to keep normal life going as far as you can because recovery alone is simply not a motivator at this stage in the illness. 
Very tough. My heart goes out to you. 


Believe you can and you're halfway there.
Theodore Roosevelt.
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CED123
@melstevUK that's the message I have been trying to give her - both generally and more specifically with the need to be well to go to sixth form and to get on with her life.  Sixth form was a huge motivator but still not enough. she is just not able to act on this at the moment.  The anorexia is still really strong. 
Currently no light; only tunnel 🙁
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LaraB
I know how worried you are. Has there been a meeting with both ip unit and cahms with you to discuss the next phase after discharge and support required? Without obviously having the full picture, it sounds like she is managing at home with the support provided remotely by IP unit. Ideally ( and yes I know we are not in ideal world) the transition from this level of support to support from cahms should be smooth and tailored to whatever your D needs. Do you have a sense of what support would be useful over the summer? Hugs. 
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CED123
hi lara. Yes - they have done a good job of handing over.  We have the clinical psychologist, psychiatrist, family therapist and dietician on our team (not just a counter practitioner like before) - and they have started picking up/connecting with D while she is still with the IP team. but she plans to ditch camhs as soon as she can, so it depends how much they have managed to build up a therapeutic relationship in these couple of weeks I think.
Currently no light; only tunnel 🙁
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LaraB
Keeping fingers and toes crossed for you and your D. X
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Torie
Hi CED, I just wanted to let you know I am thinking of you and wishing for the best on this next leg of the journey.  Please be sure to keep us posted. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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CED123
Thanks Torie
Currently no light; only tunnel 🙁
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CED123
Here's a Q you might be able to help with: if I ask D to eat anything (she is refusing snack) it's like she doesn't eat to spite me (I know that's not true but it's the best way of describing it). She has said so herself basically - it just makes her want to do the opposite. So, since the defn of insanity is keeping doing the same thing and expecting a different response, maybe I should do something different.  (and remember we had 10 months of doing this and failing before IP too).

Any ideas? Should I just say nothing at all ? and just clear the food away again when she doesn't eat it.  It just feels so wrong to do nothing - but I was thinking about @Kali's recent blog and maybe I just leave the talking to the clinical team and just dish??

Does anyone have any experience of how they dealt with this?
Currently no light; only tunnel 🙁
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LaraB
I would probably say i know i cannot make you eat but you have been doing so well. It is important that you keep moving forward. And leave the snack with her.
Sometimes this has worked for me as it puts her in charge rather than me forcing her.

If she doesnt eat, i would serve next meal as usual as if nothing happened and try to make up for missed cals secretly
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LaraB
it clearly depends on your D's mindset and level of motivation. Sometimes my D protests but calms down herself after a few minutes and will eat. I try to be patient and supportive. ( the i am on your side approach). Sorry about bold lettering. I find really important to try to keep the communication going with my D / talking about other things so our relationship is not all about me trying to get her to eat, and to demonstrate my belief in her.

One protest about a snack does not mean that you are plunged back into the dark days. Sometimes i feel like this as in one missed snack triggers memories of difficult days and it can be difficult to be calm. 

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Enn

I am picking up on a point that you mentioned. You stated that you ASK her to eat snack. We learned here not to ASK , but I would just say ‘ snack time’. Then I said nothing. Coaxing never worked here nor did any explanation but she was only 12.

My d also would say if I tried to make her eat she would not. I would just say to her on those moment, ‘ you know what you have to do’ ( I tried to say it calmly so that she could not get the better of me). If she thought I was unruffled d she got quiet and ate. 

 

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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CED123
Sorry @Enn - badly worded post. I don't ask either.  I would just call her down by just her name and would then say things like 'sit down', ' you need to eat your snack', 'it's part of your plan' and similar.

@LaraB she decided to take her snack off her meal plan on weds, when the dietician refused to, and hasn't eaten it since.

I haven't done any prompting for the meals she has had here while still under IP care for the last few weeks: she hates me prompting so she has done it all herself with prompt sheets (or with phone support from the nurses), and I just sit and say nothing unless spoken to (she doesn't like me talking either). But that doesn't work if she has decided not to eat it.
Currently no light; only tunnel 🙁
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Kali

Hi CED,

Yes leave the talking about the eating disorder or food to the team and try just dishing. However that does not mean that you let her not finish, or not eat!!!! Try talking about something else while you are eating. I found that if I tried to avoid "I" and "you" statements, for example:

"It's lunch time"
"Dinner is ready"

instead of 

"You need to eat now" or "I want to give you lunch now".

it is more neutral and so was not about me or her. 

And don't ask her if she wants to eat. If you ask someone a yes or no question that leaves them the opportunity to say no.

(Good thing to remember with teenagers in many other situations also🙂.

"It's Lunch time" and "dinner is ready" are statements.

Occasionally I did give my daughter some choices for substitution of foods if she completely refused. For example one night I served Lasagna. She was not able to eat it because it was all mixed together and too complicated for her at that moment. So I said, Ok here is a choice: "Either there is lasagna, or there is also pasta, sauce and cheese and sauteed spinach instead. She chose the pasta sauce and cheese and sauteed spinach (basically the exact same things that were in the lasagna but just presented in a different way and then she ate that dinner just fine. I don't know if your daughter has had issues with foods that are mixed together and difficulty eating those, but mine did so sometimes it was better to keep things simple at first when she came home, rather than serve things which she might feel were too difficult. The idea was to first off get into a solid routine of eating. Later on I served the more complicated things after we were in the routine, and it went better. it didn't mean that I gave up on having her eat lasagna, but just that I remembered she had trouble with it and my plan became to delay it until she was able to move ahead and eat it. And the day came where she was able to eat lasagna just fine.

Also you ask someone to substitute something or give them a choice between two foods, you are not asking them a yes or no question. If you say there are apples or oranges which sounds better? then they are more likely to choose one instead of saying no.

I found that if she seemed to slow down while eating or said she was full I stayed at the table and continued talking about other things beside food and I let her sit for a few moments without eating and just patiently waited. However, if she tried to get up and not finish I then asked her to stay and have some more and quickly changed the subject again to talk about something else. Again a neutral statement "Have more of that macaroni" "Try a couple more bites of that macaroni" seemed to work much  better than "You need to eat that macaroni" or "I want you to eat that macaroni"

It was a pretty simple thing to do but it can change the dynamic and it worked for us.

Hmm..I'm wishing I had put that in the blog post also!

Also if as you say she is just eating so that she can get out of inpatient and then to refuse to eat at home, can you make a plan? What happens if she is not able to eat? Can you work out a plan with the unit where you can take her back? Or what does her team suggest in this situation?

Also you say:

 

Quote:

She is going to throw away any prospect of getting into sixth form

 

 

So my question is: does she want to get into sixth form and if so is it something you and her team can use to help motivate her to be able to listen to her team and do what they would like her to do regarding her eating?

Trying to talk about the future and some things she might like to do when she is well could help motivate her.

Wishing you well.

warmly, 

Kali

Food=Love
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CED123
Kali wrote:

However that does not mean that you let her not finish, or not eat!!!! 

Unfortunately I have no way of getting her to finish or eat, if she has chosen not to. I can't even get her to stay at the table. and LYSUE has never worked - she just carries on anyway.

Kali wrote:

Also if as you say she is just eating so that she can get out of inpatient and then to refuse to eat at home, can you make a plan? What happens if she is not able to eat? Can you work out a plan with the unit where you can take her back? Or what does her team suggest in this situation?


We don't get to take her back - they feel she needs to basically fail and work out that she wants to recover.  The plan really is that we keep pushing sixth form, there are expectations she has to meet to get signed off for sixth form, but I don't know if that is enough.  She thinks they can't stop her unless she is really low weight.

Currently no light; only tunnel 🙁
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Torie
This is probably a terrible idea and generally the opposite of what I always say ("Don't try to have a rational conversation with an irrational person"), but I wonder what would happen if you said something like: "Here's my job: it is my responsibility to make sure you follow the doctors' orders of eating according to Plan x, y, z.  Do you have any suggestions for how to accomplish that?"

Terrible Idea #2:  Perhaps invite a family member or friend to join you for the snack

It is so hard.  I wish I had better ideas to offer. 

Hugs xx

-Torie
P.S. What were the professionals doing to navigate this?  Have you asked them for suggestions?
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Enn

I perchance,just looked at this and thought about your situation @CED123
https://www.emotionfocusedfamilytherapy.org/wp-content/uploads/2016/07/FBT_EFT.CPP_.pdf

Not sure if this is something you could talk to the team about? 

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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Kali

CED123

I too had been very anxious before my daughter came home from her residential stay.
We had a practice weekend at home and we also went out to eat together at a pizza place and both of those times things went fine. But of course I had my doubts.

The actual homecoming went better than I expected. I feared we would be in the same place as when she went in: food refusal.
But she was different because of what she had gone through because of her illness, and the treatment she had received, which was excellent.

One of the things that motivated her was that she said she never wanted to have to go back to residential treatment again. 
Perhaps you can have a talk with your daughter about all the things she can do in her future if she stays well and try to find something, anything that can help motivate her to walk towards that light even though it will be challenging for her at times.

One of the things I did when she came home was to keep the schedule and times of meals and snacks the same, at least in the beginning.
Because she had been able to choose a menu while in treatment, we sat down once a week together and made a menu for the week ahead. Then I did the shopping and posted the menu on the fridge. It seemed to help her that there was a structure and that she knew what to expect. Before she left the hospital, the dietician sat down with her and had her pick out 8-9 breakfasts, lunches, dinners and snacks that she would agree to eat and they all had to have enough calories to mix and match for a full days nutrition. I've just taken an image of the list and will email it to you in a few moments. It really did start us off in a good direction. My daughter was 18 at the time so we did give her more choice than perhaps a younger child might be able to handle. Can you ask the center she is in and one of the nutrition staff to prepare something like that with your daughter before her discharge? I think it was a great idea and it helped me enormously to be able to look at the list of foods and know that if I prepared one of them she had agreed to eat it.


warmly,

Kali

Food=Love
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Foodsupport_AUS
It is so hard when their brains are still so truly hijacked by ED. We also had zero response to LSUYE, it was only after multiple, multiple admissions that her brain got the idea that if she restricted again she was going back in. The amount of repetitions these kids need for this message to sink in is enormous, despite the fact they are often really smart. Having some form of internal motivation that they can use to try and fight back against the thoughts is the only way they are able to keep on moving forward independently otherwise it is just us putting up fences to keep them safe from themselves. 

I think Torie's idea is a good one. She deep down knows that she needs to follow the meal plan, including her recently dropped snacks, the fact that her ED thoughts make her think restricting is a great idea tells you she is still quite unwell.  By physically starving herself she will not be able to do sixth form, and may be putting limits on other things she may want to do. So how does she think it would be the best way to move forward? 

Given she is refusing snacks and still inpatient, does this mean there may be some changes to her plan for coming home this week?
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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PleaseEAT

My d needed 3 IP stays and I’m not saying this to discourage you as many have needed multiple hospital stays

its terrifying when they come home for both us and them
my d lie down in the passage way and cried for hours on end and SH too it was dreadful 

i felt my d was “safe” from SH and being fed whilst IP and the thought of me having to deal with the SH as well as try to get her to eat was very scarey for me
i think back now and understand why some days I’m a bit of a mess 

and atm my d is going through a “rough patch” and I have no clue what’s going on but as I type this she is fixing herself some lunch yay!!
this was after me yelling at her to get out of bed as her latest trick is to sleep all day and up all night 

anyway to begin with when she was first discharged from IP we also had a meal plan on the fridge and this worked well

I also had to supervise supervise supervise every meal and snack even though she was over 18 by this stage, even watching that she put the margarine on the bread as if they start restricting one thing then it’s another and another

I took so much time off work it’s a wonder I didn’t loose my job 

our team did help with the first weeks meal plan and then I did it with her giving her a few choices  (Would you like fish or chicken on Monday night) that sort of thing
the meals were always well balanced “normal” meals and as above same time/routine as hospital 

each IP stay my d has become more independent and it’s really hard as I don’t think she’s eating enough but having said that it’s been 1 year since her last hospital stay so I guess that shows she’s doing ok
so slowly slowly things do improve 
but I’m forever watching and  worrying (hard not to after the he$$ we go through)

we have a big family celebration tomorrow and possibly she is anxious about that who knows?As she is quite moody today 

try to think positive It may be better than you think all weight loss talk is ED, my d never said it but I know she thought it I’m pretty sure they all do

it is really hard transitioning and it’s not a failure if she does happen to need another stay IP
I know I was also terrified of her having to go back in and did actually feel like a failure when she went back but it
just means their ED is very strong 
Hoping the transition goes smoothly for you both 
but know it’s normal too for it not to
good luck 
hugs 

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CED123
@Torie - thanks for the ideas. I think her answer to the first one will be "but I am not keeping to the plan."  Professionals have been doing you can do this/you need to do this/ it's ok to ask for help/ you deserve to eat type motivation but she won't take any of that from me. And they would give an activity ban for missed meals but at home she just ignores that.

@Enn - thanks for the paper. I will have a read. 

@Kali - yes, we've done IP at home for a month and she has mostly stuck to the plan (apart from a couple of meals which the nurses talked her through by phone). Thanks for digging out the list for your D.  We have done something similar (but much more restricted).  It would be great if I could keep her to that plan - that was my hope - but she has spent a lot of time plotting out how she is going to replace breakfast and lunch for fewer calories, drop the dairy etc., but keep dinner so I can't say she isn't eating and take her to hospital.

@Foodsupport_AUS @PleaseEAT - yes, I think she will need another admission. unfortunately she knows that they cant make her go unless she is at medical risk (either not eating at all or very very low weight) and I don't think she would agree to go this time (although who knows). 

At the moment I just don't feel I can cope with the part in between, with going so far backwards. I've taken 3 months off work to supervise her over the summer but I don't know where we will be in sept. And I'm pretty much doing all this on my own - she won't let her dad get involved and in any case he is also caring for his mum who is dying.
Currently no light; only tunnel 🙁
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Torie
CED, you have thought about this challenge so long and so hard and with such wisdom, I think it unlikely that I can come up with useful ideas you have not already considered / tried.  I hope it will give you some comfort to know that we are with you in spirit as you face this next round.

Best xx

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