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Hebrides

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I know I haven't been around here for a very long time, though you have all been often in my thoughts.

Our beloved d will be 18 this Friday. She is still in hospital, but after 5 months in the adolescent PICU (Psychiatric Intensive care Unit) where they have kept her fed (100% NG fed including meds, with restraint) and safe (managing multiple ligatures every day etc) she has to transition to adult services and move to an adult ward. Despite our CAMHS team's best efforts at starting the transition process back in the spring, here we are on the brink with no placement in place and a d with stress levels through the roof even more than normal.

We know phone conferences have taken place, referrals sent off, NHS managers and commissioners on the case, but as far as we understand those places which haven't turned down the referral because of the significant SH risk and might possibly take her have waiting lists of 6-12 months. The adult PICU in the same hospital won't take her because of the dynamic of their current patients. 

We feel strongly that wherever she goes needs to be able to actively treat her severe AN and her emergent personality disorder; we live in fear that if they can find her a bed, it may well not meet all her needs and become just another "holding bay" rather than actively supporting and treating her. 

Adding to her stress is the fact we've been told it's likely she will have to move on her birthday for "technical" reasons ie they can't have an "adult" on an adolescent ward and an adult ward can't have an adolescent for safeguarding reasons. To us that seems brutal and inhuman - it is bad enough to be in hospital for her birthday (again), but to have to spent the day in transit and then in an unfamiliar setting rather than at least with staff and patients she knows...just writing this makes the tears come, sorry! 

I'm sure many of you here have experienced similar situations - I'd be grateful for any thoughts/advice on getting through the coming days.

Sending love and hugs to you all,

Hebrides
xx


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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
toothfairy

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Reply with quote  #2 
Hi Hebrides, 
I am so sorry. Huge hugs to you.
How is her weight now? Do they have her gaining ?


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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
tina72

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Reply with quote  #3 
Hi Hebrides,
I´m sorry that its that difficult for you at the time. I think its quite inhuman to change her right on her birthday. The "adult on adolescent ward" argument sounds quite strange to me...with that argument they have to change her right at midnight!
If its possible to leave her there up to the morning it must be possible to change her the next day also. Maybe its an argument from the financial side and you could pay something for that? Maybe her therapist could speak for her and tell them that it would be important to have a safe and calming birthday...
Here in Germany the adolescent wards change patients in the year after they turned 18. So if you have birthday on adolescent ward you change in the coming months.
The hospitals can make exeptions for patients up to 21 if they are with special needs...ask for that.
Is she refeeded?
Yours,
Tina72
Hebrides

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Reply with quote  #4 
Hi Toothfairy,

Yes, the weight has been going on slowly, with great distress of course. I think she's about 90% weight for height now and absolutely no sign of anything shifting, both with the AN and the suicidal thoughts - no let up at all.

Just heard from the unit that all referrals have come back negative - there is nowhere in the UK that is able to take her at present. Not sure where that leaves us, but I keep trying to tell myself it is not my job to find a bed. If there is no bed, they will have to keep her beyond her birthday, surely? 

Have spoken to our CAMHS consultant who says the case has now been escalated to the clinical director of the NHS trust, and also somewhere high up in NHS England, though I'm not sure what magic they can work if there are no suitable beds available? All the places that look like they can offer what she needs (secure, ED and BPD treatment) have long waiting lists.

In an attempt to occupy my mind with other things, am going to do a spell in the garden and visit a dear friend in the last weeks of her life in a hospice.

I do so often wonder when things are going to improve, even just a tiny bit, and increasingly IF things will ever get better... So hard to hang on to hope at the moment.

Thanks for being there, TF.

xx

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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
tina72

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Reply with quote  #5 
Hi Hebrides,
it might be that you will see something shifting a few months after weight restoration. Keep hoping. Most patients start recovery not before the weight recovery. And some need to go over the 100% that the hospital said is the target weight. In our case the target weight is about BMI 19 and that is too low. But since our d is weight restored we see a lot less anxiety and she is doing better with herself and her body every week. It takes a long time for the brain to recover, but it is possible.
I think it might be good news that they can´t find a bed...so they have to keep her over her birthday, I hope.
Send you some hugs from Germany!
Tina72
Torie

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Reply with quote  #6 
Hebrides - So sorry you and your d are in this difficult situation.  I know someone here was able to have her d transported to a different country and treated there when the home country was not able to meet her d's needs.  I wonder if something like that might be a possibility?

Just want to mention that you and Tina posted at the same time, in case you missed Tina's post just above yours.

Please remember that there is ALWAYS hope.  Additional brain maturity can be powerful, in and of itself.  You know we hear it all here, and that sometimes includes recovery stories after a long and arduous journey.  

Thinking of you.  xx

-Torie

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

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Reply with quote  #7 
Sorry that your D continues to struggle so much. 

The shift on 18th birthday does sound very bureaucratic, more to the point it sounds as though there is nowhere to send her, so surely it makes much more sense that she stays where she is. 

Different country, different rules but here transition to adult services if in patient is not on 18th birthday. During my D's last admission one of the inpatients had her 18th birthday, she stayed in the child/adolescent ward. Further my D was not transferred from services until after she had left school, as long as the new school year had not started she stayed in adolescent services. For us that meant my D was 18 years 4 months before we had to change. 

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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.
mjkz

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Reply with quote  #8 
Quote:
If there is no bed, they will have to keep her beyond her birthday, surely?


I'm so sorry Heb.  I hope they would still keep her and not just discharge her to a general adult unit.  How is her state?  Is she any better at all?
K63

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Reply with quote  #9 
Hi Hebrides, good to hear from you but it's still really difficult. Isn't it incredible that they had all this time to prepare the service knew she was going to be 18 they had time to prepare this is adding extra pressure and upset that you or your d don't need. I know it's changes here too at 18 but not sure how it works if someone needs transfer. Thinking of you and hope they can sort out something very soon without too much upset.
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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
NELLY_UK

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Reply with quote  #10 
Hi Hebrides, my d was in an asult ward age 14 at Huntercombe Maidenhead and whilst it wasnt ideal she had a special with her all the time ao nothing inappropriate could happen. If there is no bed at Bethlem which would be a great place for her ( adult section of Maudsley) I would argue they can keep her where she is until a SUITABLE bed is available with a special alongside. Might be time to write to your MP and get what is best for your d.
Occassions missed are absolutely heart breaking, i have been through similar. Hang in there. Xxx

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
Hebrides

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Reply with quote  #11 
Thank you so much Tina72, Torie, Foodsupport_AUS and mjkz for your kindness and support, much appreciated. Mjkz - no better at all, sadly, she cannot see any glimmer of hope, says she had not thought she would still be alive for her 18th birthday etc. There has been no further news, other than d has been told by the unit she will definitely still be there on her birthday, for which she and we are grateful. I took a couple of her old school friends to visit today as a surprise (she has not  seen them in nearly a year) and seeing her face light up as she came into the room was an absolute joy. There was much chatter and laughter. I spoke with her on the phone this evening and she was still buzzing from the visit - and told me she had eaten watermelon after we'd left, and was going to try to have a cup of tea on her birthday!!! I know watermelon is pretty low on calories, but just choosing to put it in her mouth and chew and swallow after 6 months' NG feeding is huge.

My hope is restored - a little bit.

xx

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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
toothfairy

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Reply with quote  #12 
Heb,
How are things?

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
Hebrides

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Reply with quote  #13 
Thank for asking, TF. We had a happy visit on d's 18th - ward staff had made a real effort (cards, presents, hair done, make up done) and d enjoyed opening presents and cards and playing a few silly games...plus she did indeed have a cup of tea. It was so lovely to be with her and see her a teensy bit more relaxed and more her real self, even if it cost her a huge amount to keep it up for the duration of our visit. Who knows what was going on in her head... We've been told the adult acute ward in the same hospital and their adult ED unit are to meet "this week" to see if they can come up with a plan to work together; not sure at all what happens if that doesn't work out, but we feel a bit calmer than this time last week knowing that the whole "she'll have to move on her birthday" scenario is behind us.

Hope your son is doing ok? 

xx

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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
Torie

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Reply with quote  #14 
Hi Hebrides - I've been offline for a few days so I missed your most recent updates.

Yay yay yay for watermelon!!!  So glad to read that!!

And then tea, too?!?  Wow - take that, ED!

I'm sure it is still extremely stressful and challenging, but really great to see her taking little steps of oral intake.

Please keep us posted.

Thinking of you. xx

-Torie


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

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Reply with quote  #15 
Hebrides, my heart once again goes out to you - have hope that the weight restoration will have a good effect on the maturing of your D's brain and that this will help her (she's still not there yet at 90%) -  you know this already but sometimes it helps to read it again that the weight gain part of this illness is always the hardest for the sufferers and stays that way even some time after weight restoration so don't lose hope and look after yourself - if you don't look after yourself you won't be able to help your daughter. (I have to repeat these words to myself all the time too!)

Just another note of possible comfort. I was told that the SH aspect of this illness - ligatures etc is a sign that your D is saying that she is still struggling - this means that she's not locking away her feelings of distress by bottling up and she's obviously crying out for help. I was told by my family therapist that the SH (although stressful for the parents) is a sign of more honesty in the recovery process because it is an obvious sign of distress but it is up to the team to help her express her emotions in other ways. Please be hopeful that once she manages this distress and the eating (which she has done in the not so distant past) that her recovery (albeit slow) should be a long lasting one. Hope that makes sense!

XX
mjkz

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Reply with quote  #16 
Heb, glad to hear it went so well and she is hanging in there.  What do you think will change from where she is now to the adult ward?  I'm so hoping that her eating and meds don't become her personal choice!!

Quote:
says she had not thought she would still be alive for her 18th birthday etc.


My daughter said exactly the same thing!!  I used it to challenge her i.e. so now that you are alive at 18, what are you going to do with your life? What do you want to be?  Where would you like to travel?  Where would you like to see yourself in a week, a month, a year?  It sounds trite but it was a turning point for her. She truly believed she would never live to be 18.  Then when she did, it was like oh, gee now I've got to figure out what to do with my life and where I want to go.
catbells

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Reply with quote  #17 
Hi Heb
So glad you're d enjoyed her birthday. A cup of tea too. Progress indeed!
Thought I'd chip in about what I've seen on my d's unit. They have had a number of girls who have stayed on the ward beyond their 18th Birthday. Either because they were close to discharge or while they waited for a suitable adult bed to become available. I'm sure her team will be doing everything they can and if not, do as Nellie says and write to your MP.

Is there a chance her friends could visit more often? They seem to have had such a positive impact. My d's friends don't visit too often and usually separately but a couple of months ago they came as a group. The difference in my d after their visit was amazing. She called me afterwards crying saying how she'd wasted her life, was a loser with her tube and SH scars etc etc. After I'd calmed her she came to understand that she did care about life after all and that she did want to be like them. It was one of the turning points for her. Don't get me wrong, we are still not taking the straight road to recovery but the winding, uphill, dead end (often) path. Small steps. So yes I'd encourage visiting from friends if you can..
I also agree with Izzo on the SH. She's asking for help. My d's SH behaviours escalate when she is making progress on the ED side. It's a form of punishment to deal with the guilt but also telling us she is finding things difficult. She is finding ways to manage this though and they have decreased.

Fingers crossed you get some positive news xx

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Mum to 17y/o D living in England. RAN since Sept 2015. Refed at home but after getting within 3kg of WR D relapsed July 2016. hospital twice for 2 and then 5 weeks. Now IP since Sept 2016.
Hebrides

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Reply with quote  #18 
Apologies to K63 and Nelly - not sure how I managed to not see you replies before I posted mine. Thanks for your and everyone else's support, which has got us through the past week. I had wondered about getting in touch with our MP (especially since we had a change at the general election [wink]) and/or the media but feel reluctant partly because I just don't have the energy and partly because I want to protect our family from being in the public eye. I know there has been a similar story in the UK news over the last few weeks, albeit different context. But maybe I should... I will raise the possibility of her being able to stay where she is with a special in place; out of choice we would of course want to limit the number of times she has to move unit, so that may be a workable solution? 

Izzo - thanks for reminding me of the things I need to be reminded of! The perspective on the SH is so true as well - it has always been the case that an increase in distress leads to an uptick in SH, so it's no great surprise that the incidence of ligatures has increased recently. We have always recognised the SH (cutting, overdoses, ligatures, headbanging etc) as ways she uses to communicate how awful things are for her when she feels unable to express herself verbally. There is also normally an increase when she feels that others think she is "doing better", as though she needs to have a very visible reminder that she is going through hell on the inside. Wherever she goes next will need to provide therapy (DBT, I guess) that will help her adopt better, less destructive and risky ways of expressing her emotions.

Mjkz - I like your response to the not expecting to still be alive at 18 statement! I will see if we can initiate such a conversation at some point.

Catbells - your experience post-18 is interesting and though I doubt the PICU would be willing to go down this route for the 6-12 months' waiting list times at appropriate units, it's worth asking the question. Her friends did say they would like to visit again; they will all be going off to uni in a few weeks but maybe another visit can happen before then (unless d is at the other end of the country...)

It feels very hard to make any kind of plans (although I have just rebooked our cancelled trip to Florence for November) until we know what is happening, even in the short term.

Thanks all - will keep you posted.

xx 











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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
Hebrides

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D remains on the PICU, 10 days after her 18th birthday. The phone conference didn't happen till last Friday to discuss the possibility of moving her to the adult acute ward, with support from the ED service for ng feeds and therapeutic input. I got a call from our home team family therapist the evening before to say the hospital had been trying to push the move through on Thursday without a proper care plan in place but thankfully the funding hadn't been agreed so it didn't happen. Just as well - at the phone conference it seems the ED service said they didn't have the resources to support ng feeding on another ward, the acute ward manager wanted to delay and discuss with their consultant who's only back from leave tomorrow, so they decided d should stay where she was over the bank holiday weekend because of skeleton staffing levels....

Another phone conference is scheduled for next Wed pm. I suspect (and hope) the commissioners (who have to agree funding) and the director of adult ED at NHS England for our region will not agree to a plan which doesn't include specialist ED input. But if they cannot agree on a plan, I have no idea what happens next. D is on waiting lists for those places that didn't turn down the referral, but said they had 6-12 months waiting lists - but those beds aren't going to come up any time soon. It's an utter headache (I have one most days) and h and I are both spending considerable parts of the night awake and worrying about where she will go and how she will be supported (or even if). Scary. Needless to say, the uncertainty is continuing to make things pretty tough for d. Ugh. I did write a letter to our MP yesterday, though I'm not sure there's anything he can offer. Those of you who saw the Channel 4 documentary last week - I have even contemplated writing to Prince William, to Mark Austin [journalist whose daughter suffered from AN], to anyone who might listen and have a shred of influence (rules Jeremy Hunt out, then [UK health secretary]), but no one is going to be able to find a bed that doesn't exist.

We go to a remote Scottish island on Saturday for a week with our elder d - not looking forward to another holiday without ED d, and I don't know how we'll feel if the move isn't sorted by the time we go... 

i have a constant fear something awful will happen...

xx

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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
tina72

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Reply with quote  #20 
Hi hebrides,
sorry that you didn´t find a solution upto now. Thats hard all that waiting and doesn´t knowing what will come. I don´t believe they will send her home or something like this, so they have to find a bed or leave her where she is.
What is the worst case you are thinking about?
Would there be a possibility to take her home and go on refeeding there is everything fails?
Send you a hug from Germany! Keep on hoping, there will be a solution!
Tina72
Foodsupport_AUS

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Reply with quote  #21 
The fact that they have kept her is at least heartening. It does sound as though they have little idea as to where she will go next, but it also sounds as though they clearly acknowledge her severe ill health and the need for ongoing treatment. I know you want to be around to support your D if she is moved so hoping they don't plan on anything while you are away. Enjoy the holiday. 
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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.
mjkz

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Quote:
We go to a remote Scottish island on Saturday for a week with our elder d - not looking forward to another holiday without ED d, and I don't know how we'll feel if the move isn't sorted by the time we go...


That sounds like heaven.  Please don't waste the time worrying!!!  You need a break and your hubby and other daughter need you. I hope you come back recharged and ready to fight.  You know your ED daughter would want that for you even if she can't be there with you.
Izzo

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Reply with quote  #23 
Hi Hebrides

Please enjoy your holiday - it Gives the message for your daughter that life goes on - I think my D made a lot of progress when I was away earlier this month for two whole weeks .

It really killed me the idea of going on holiday without her - but I tried to override the guilt and make sure I did it for me, my H and my S who all needed a break.

Two weeks was a bit long for me btw as I started fretting towards the end ....but a week will do you a lot of good.
Hebrides

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Reply with quote  #24 
I can't quite believe 6 weeks have passed since I was last here....and d is....you guessed it....in exactly the same place [adolescent psychiatric intensive care unit although now 7 weeks + since her 18th birthday]. Still no sign of a bed in an adult unit, despite continued efforts, phone calls etc. I did talk to our (very supportive) MP who has also made phone calls/sent emails to key people, but so far nothing. 

One major thing has changed though and I would welcome your thoughts/experiences/advice. A couple of weeks ago her team wanted to try things differently, so with the incentive of enabling a visit from her beloved rabbit (who will very likely not be able to visit when she does move as it will be too far away), they took the decision to stop the ng feeds in the hope that d might just possibly find it in herself to start eating. We were sceptical, but also recognised things were and have been very "stuck" for a long time (7 months of ng feeding). Somewhat miraculously, d did indeed eat, including apple, yoghurt, toast, and 2 main meals - I felt bad for not feeling totally elated, but it felt like something of a dream, and we had concerns over whether she could, or wanted to, sustain the eating after the visit. 

Sure enough, the following day, she stopped eating again. We will never know what might have happened otherwise, but that evening she was served a "buffet"; apparently this is served about once a month to all the ED patients in the hopsital (ie those on the adolescent acute and PICU wards and adults in the specialist ED unit), the idea being they have to choose from a large platter a selection of foods equivalent to their meal plan. Several things wrong with this:

  • for someone who has only just started eating again after 7 months' of no oral intake, totally inappropriate and impossible for d to make choices about what to eat
  • No one on the ward was told this was going to happen or how to handle it
  • it was not explained to d that she did not have to eat the whole plateful - she saw the meal trolley arrive with her name on a huge plate and freaked out
  • it was a weekend, so no dieticians, doctors, therapists around
The ward staff have been good with d, and those on duty when this happened were clearly at a loss - not sure who is at fault, possibly the dietician??

D says that it was this meal and the panic it evoked that has resulted in her stopping eating. I have spoken to staff most days since then (10 days ago) and it seems she has eaten and drunk a bare minimum. Bloods are being checked daily, blood sugars and orthostatic BP every 4 hours. An ECG was done last week and although I asked for them to do one over the weekend, I don't think that has yet happened. 

All this also means d is not taking her meds (which previously went down the tube). Staff report that ligatures have dramatically reduced, d is much brighter, jolly, chatty...of course she flipping is - anorexia is having a field day!!! I have tried to explain to them that this is not a positive but rather the irony of being "much more herself"  at the cost of taking in nutrition... which is nothing but a path to self-destruction. I should have visited today but not felt well, so have postponed for tomorrow - and hope I can speak with staff before I go.

Has anyone else experienced similar? I know staff are trying their best but they are not ED specialists and they have been very much learning on the job since d's admission.

Each day we hope for a miracle...

xx

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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
Torie

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Reply with quote  #25 
If she eats breakfast, can the rabbit go with you tomorrow?
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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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