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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

Join these conversations already in progress:
• Road To Recovery - Stories of Hope
• Events for Parents and Caregivers Around the World
• Free F.E.A.S.T Conference Videos

Visit the F.E.A.S.T website for information and support.

If you need help using the forum please reach out to one of the moderators (listed below), or email us at bronwen@feast-ed.org.

OxfordMum
My d has been an inpatient for 4 months and on Monday was transferred to an adult unit (as she  recently turned 18 and a local NHS bed became available). She is now a healthy weight but, mentally, still has SO far to go. She had become quite comfortable in the hospital. It was an incredibly strict regime but she learned to trust it and felt safe. In the last three months, she has eaten almost everything presented to her . However, when on home leave, she will only eat if I serve her what they had in the hospital and at the same times. Now that she is in a different hospital, she is being served different food at different times and is really struggling. She often needs to be given a replacement drink. Amongst other new things, she is having to face desserts for the first time and - horror of horrors - a chocolate biscuit for snack (all of which she has refused). She has also developed a number of strong anxieties unrelated to food.
She was allowed home for Christmas but I haven't seen her in this state and this low since the summer. Trying to get her to eat a piece of toast for breakfast (and failing) took me back to the horror of August when she was admitted. I really don't know what to do. She is so unhappy. The adult patients tend to stay in their own rooms so she is lonely and misses her friends from the old place. We have been told she won't start therapy for a couple of weeks at least. She is supposed to be transferring to day patient care in January but I doubt they'll let her as she is not complying with the diet and is still under section. Her self harm has got worse lately too but there is no supervision after meals where she is now. She has come so far and I am terrified she is about to slide back down to where she was.
She wants to go back but that's not an option. Would I be better off trying again at home?
D, now 19. Diagnosed with anorexia July '13. IP August - January 14. Day patient till Mar 14. I year in recovery before relapse
Quote
Colleen
Hi OxfordMum,

I'm sorry this change isn't going well for your d.  Change is hard for our kids while they are ill.

I can't speak to the services available in England, but your d's behavior sounds very typical of ED.  ED has gotten comfortable with the routine at the hospital--so much so that those rules became the new ED rules, and were so strict that you even had to follow them at home.  Now that those rules are being challenged, ED is flaring up again--depression, refusal to eat, etc.

Do they require her to meet her meal plan/calorie requirements at this new place?

If you were to take her home, would you be able to get her to eat?

Right now, nutrition is the #1 priority.  If they are consistent at the new place that she gets full nutrition every day, whether through eating or supplements or ng tube, then that's the main thing.  Therapy and friendship can be helpful but not in the same way that nutrition is.  Not just nutrition itself but also all the rules around eating which are being challenged right now.

If you think you can get her to eat the amount she needs to keep gaining at home AND you can challenge the rigidity that has developed around eating, then that's an option too.

I'd just warn you not to fall for the trap ED may be setting here.  It's entirely possible that your d is lonely and depressed, but taking her home won't necessarily improve that because it may very likely be distress at having her food rules interrupted.  ED would be more comfortable at home bossing you around with its rules and requirements.  The goal is to make ED uncomfortable!  And that means distress for your girl--as moms that can be hard to handle.
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
Quote
OxfordMum
Thank you Colleen
They do require her to eat at her new place but there is no threat of ng tube as this is only administered in exceptional circumstances. At home, she will eat without a problem but only under her rules. She also has to eat foods in the same order every time - drink, then veg, then protein, then carb. it drives me mad but I don't say anything (except suggesting sometimes that she mixes things up a bit!). She doesn't really see her friends any more when she's at home and is not interested in school work. I have to stay with her all the time as she is anxious about being left alone. I just worry that all the new place will do is get her used to yet another regime and another set of rules. The last place did its job in that it got her physically healthy again but it seems nothing has been done to address her other problems. I know you don't have a solution but thank you anyway for your thoughts.
D, now 19. Diagnosed with anorexia July '13. IP August - January 14. Day patient till Mar 14. I year in recovery before relapse
Quote
Red
This must be so horrible for you both, but I must admit that I see many positives in this new situation as well as negatives. Being required to eat a variety and challenging foods should eventually lead to much greater freedom from ed rules than a comfortable routine. If I were in a similar situation, I hope someone would counsel me to give it time. Dreadful as the anxiety & low mood is, it is often a sign that ed is being challenged. Add this to the fact that everything is new/different and it is unsurprising that she is finding things so difficult. If everyone stays consistent, she should move forward.

It is worrying though that she is able to SH, & that here isn't after-meal supervision. Despite her age, these are things that you child bring up with the unit.
The future is not set; there is no fate but that which we make for ourselves.

"Not my daughter, you bitch." Mrs. Weasley
Quote
MarcellaUK

I'm sorry that she is struggling so much. How sad for you all.

I do understand your concern that, even if she does get used to the new place, she will just become as fixed and rigid about their rules. However if they are able to keep her eating, while challenging the routines and rules that ED has managed to develop at the old place, maybe it would be safer for her to be there? If she came home would you be able to challenge the rituals and get her to eat enough to maintain or, if necessary, continue to gain?

I do know the new place (if it's the place I think it is) and know that there isn't the kind of support for education or adolescent age appropriate social events that there may be in an adolescent unit. However that can provide motivation to get well enough to get out and do other things and time to heal by resting however uncomfortable ED will be making it to do so. The adult unit my daughter went to had some lovely staff and, while formal therapy both on a group and individual basis was provided, it is the food (some of which she hated but which she ate) and the chats with and support of the ordinary nursing staff that she remembers with gratitude.

Fiona Marcella UK
Quote
lostmum
Sadly I think u need to persevere with her new unit,change is always hard but even harder where eds and other mental health issues are concerned. Although my d isn't 18 for another month over the past 3 yrs she has been in 4different units all with their own rules and expectancies,but they slowly adapt and the move will help her becoming over institutionalised. With regards to post meal support ask for it if your d is likely to purge,although it would be better if she asked(I know that would be telling ed to do one !!) Has the sh increased purely because of the move or is it weight related? You can alert them to the increase of sh and request a more pro active method of care although now in adult services I expect she is expected to take responsibility for het actions .
Quote
melstevUK
OxfordMum,

So sorry for what you are going through - the transfer from adolescent to adult services is always difficult to negotiate and while d was in the specialist facility for adolescent eds, it is to be expected that you also felt 'safe', knowing that d was being well looked after and being compliant with eating. This new facility and new ways of working with your d are both scary for her/ed - and also for you.

It is horrid to see our children suffer and be unhappy.  However, you have to be able to tolerate d's distress for her to be able to move forward through the cycle of this horrible, horrible illness.

How she eats - with or without supplements, whatever the new foods put in front of her, you need to show her your confidence that everything is being done to ensure she recovers.

As Colleen points out - nutrition above all else is what matters right now.  Happiness and freedom have to wait.

'She has come so far and I am terrified she is about to slide back down to where she was.'  The person best placed to stop her sliding back down is you.  The self harm may have increased because there is no supervision - then you have to tell d that she has to learn other ways to deal with her anxiety.  At present it sounds as if she would not manage with a day placement.   So there is a transition period going on right now and you can motivate d's return home by ensuring she complies with eating all that she has to eat.

When next she comes home - ensure she knows the rules before she comes home.  You decide what she eats and she complies: if she cannot eat what you say she has to eat - return her to the hospital straight away.  It feels hard and barbaric but this is how it has to be.  Use this time to get her to be more accepting of change and rules at home. 

The reality is that even the most 'expert' of services, anywhere in the world, only rarely effect a recovery without support being on the ground, and that is where parents come in.  You are best placed to fight for your d's recovery because you love her.  It is a big shock to find that an and eds in general are horrendously difficult illnesses to treat, and it can take a long time for parents to understand that this is often a long journey for which there is no 'quick fix'. 
But you have the support of the best website on the internet to help you help your d recover - and she will. 

Stay strong OM, you can do this.  Plan how you are going to help d move forward and stick to it. 



Believe you can and you're halfway there.
Theodore Roosevelt.
Quote
6cobhamUK
Hii
Looks like you have had some great advice here. I just wanted to add that the habits/OCD type behaviours of order etc are very common in AN and a sign of the anxiety. I I saw prof lock at GOS recently and he talked about OCD type behaviours being quite different to OCD. My daughter gets great comfort from knowing what she is doing when, and routine and order of things is really important to her. These are never things we had to deal with before ED.,during the Christmas holiday, we find that the change of routine means that she needs to know even more, what is happening when etc and have a plan for the day.
Hang in there, food is everything, the behaviours will improve in time with full nutrition. But it does take time.
Sending you a big hug. X
In this for the long haul .....
Mum to 14 year old D diagnosed with AN in May 2012 aged 12
Quote
OxfordMum
Thank you lovely people : ) You are always a comfort
I won't do anything drastic like taking her out. I am not convinced I could make sure she eats. Marcella - I think you may be right about her hating the place enough to want to leave - I asked her if she wanted some pictures for her bedroom walls and she said she didn't plan on staying! Before every meal, she decides she's going to eat whatever is given. She tells herself she's being ridiculous and that all she has to do is eat and then she can go home. So I really do believe she wants to do it. I do worry though about her being treated like an adult. She has regressed so much since this illness and just wants to be with me all the time. They don't even look in on her every 15 minutes. They just leave her in her room doing nothing (free to SH)hour after hour. How can that help her get better? Hopalong - the SH is weight related - increased a lot before the move.
The other thing is that she is now weight restored and, looking at her new diet sheet, I am pretty sure they are giving her less than she had before - they only aim for 18.5 BMI and D is already 19.7. ALL the other patients (including day patients) are underweight. I doubt they are keeping her on a weight gaining diet.
D, now 19. Diagnosed with anorexia July '13. IP August - January 14. Day patient till Mar 14. I year in recovery before relapse
Quote
MarcellaUK
It must be very worrying to have all these doubts and questions about the new unit. Just because it's an adult unit and your daughter is an adult does NOT mean that you can't ask questions about the treatment process, general expectations, policies etc.

One problem at the moment may be that fewer of the staff will be permanent senior staff and therefore know the answers.

Over the holiday period, and to a lesser extent just at normal weekends, the unit my daughter was in was much less well staffed and they didn't have the therapy groups and set up activities that they did during the week. Although my daughter complained like mad about the groups (when asked what she had learned in the psycho educational group she sighed and said "how to spell Minnesota") she actually did gain quite a lot from them (including detailed knowledge of and understanding of the implications of, the Minnesota Starvation Study) and while the full programme was running she had much less time to be bored and actually appreciated the "downtime" and got into the craze for needlecraft that the other patients shared.

When we were visiting at weekends (after a while d came home at weekends but at first she had to stay in the hospital) it was also much more difficult to ask questions of the staff as the more senior ones were often not there. When we did meet up with the staff, both during formal CPA meetings, and in the corridor before taking d out, they were very approachable and very willing to treat d in a stage as well as technical age appropriate manner (she was a VERY young 19 at the time), but the day to day nursing staff (who were LOVELY) just couldn't answer more specific questions which had to wait for the formal meetings with the big boss psychiatrist. I suspect such people are on holiday at the moment and that the unit is being run by dedicated, hard-working but junior staff. Here's hoping that next week it all gets back to "normal" and you have the chance to find out what the plans for progress are, whether your daughter will be required to get to a truly healthy weight, how the team plan to support her in stopping self-harm and all the other questions that you naturally have as a loving parent.
Fiona Marcella UK
Quote
OxfordMum
Marcella - you have really reassured me as I believe my daughter is at the same unit yours was. Thank you so much. I'll try to be patient : )
D, now 19. Diagnosed with anorexia July '13. IP August - January 14. Day patient till Mar 14. I year in recovery before relapse
Quote
NELLY_UK
Hi OM,
I am so sorry to hear that your D is not settling. As you know mine moved units a few weeks ago within HM and is only just starting to settle there. Same therapists, same food, same times, different rules, different Drs. Her mood sunk to an all time low and she completely gave up. I don't know if with an improvement in mood and time that will change. Any change seems to be such a big deal when life is so controlled by others.

She has asked to come off a meal plan and is trying to manage her food intake her self but whilst on levels still. Something that the other units at HM are able to offer.
The unit below her is the same as the one she is on but for over 18's. She preferred it there as it was so calm - we had an emergency week there when D escaped. There is a change of Dr there that is being managed through at the moment.  They are used to dealing with SH and ED there. Our D was tubed 30 minutes after she refused food.

Give it time and I hope the SH abates when she is settled. If not, are you able to get a move back but to the over 18 unit? One of the other girls from HM is there. 
I hope in reality she settles for all your sakes. Yes, staffing over Christmas has been stretched to say the least. Lack of all of the senior staff at HM as well. 

Bear with…. bear with.

xxx



NELLY D 20 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. ED/Bulimia treatmentis in the dark ages in West Sussex.
Quote
SEEnglandMum
I too am v sorry to hear that your d has struggled with the move and can really imagine how worrying this must seem.  However, I am seeing in my own d at the moment that serious dislike of a hospital setting can be quite a powerful motivator.  Initially it really worried and upset me that she so hated it and couldn't settle.  Now, although she is more settled, she still hates being there but I have started to see how that is working in her favour.  She is so determined to get out of there and never go back that she has made some major steps forward now in a short period of time.  I know it could all go backwards again without warning but now I've seen it go forwards at all, it's easier to bear.  If they can go forwards once, they can do it again.

Your d made great steps forward at the previous place but if it became too cosy for her and too much of a safe haven, then the move may in the end turn out to be the right thing for her.  It might just give her the push to want to get home and stay home, however anxious she feels about leaving a hospital environment.  I'd be inclined to go along with her attitude that the room doesn't need making nice because she's not going to be there long.  And that she's going to eat whatever she needs to do to make sure she can have her home leave.

On the subject of the different food, this is something that worries me because I know my d is getting away with avoiding certain foods most of the time by choosing her meals from the menu plans very carefully.  This means we may well end up having the battle to move her past these fears at home, which could well trip us up when the time comes. I know she would not eat a chocolate biscuit either because she's been able to stick to certain "safe" snacks in the hospital.  This is another example of how shaking things up now while your d still has the hospital support may actually turn out to be a good thing in the longer run.

I really hope that this works out for you all.  I will keep everything crossed. xx
Quote
OxfordMum
Nelly and SEEngland mum - thanks for your kind thoughts. I know you are both having a really tough time so really appreciate you thinking about me too!!! D is trying really hard so that she'll be allowed leave for new year but has struggled a lot the last few days - cheese sandwiches, buttered toast, crisps, chocolate biscuits - mostly failed. They keep telling her she's upsetting the other patients and was even told by one nurse that the others would start to resent her! I am seething about that! Grrrr. We have asked for a meeting asap with the consultant. Happy new year? I think not : (
D, now 19. Diagnosed with anorexia July '13. IP August - January 14. Day patient till Mar 14. I year in recovery before relapse
Quote
NELLY_UK
Grrrrrrrrr to those unhelpful comments.

Let's hope that 2014 is a better year than the last one.
For everyone.

Xxx
NELLY D 20 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. ED/Bulimia treatmentis in the dark ages in West Sussex.
Quote
OxfordMum
D has been refused home leave for new year. Why? because she won't eat puddings. She is eating all main meals - even buttered toast now.  She is constantly being told she's not trying hard enough. it makes my blood boil! She sits in her empty room all day doing nothing. No-one comes to check on her. She has tried the day room but she says the other patients are rarely there and aren't particularly friendly. She never thought she'd say it but she misses HM. She misses the support and friendship of the other girls. She's been told day care will not happen until she eats everything. That includes syrup sponge, ice cream and chocolate biscuits. is this really fair? A lot of people go through life without eating puddings. It's like they're punishing her, not helping her, not recognising her achievements and rewarding them. I'm ranting, I know but I just need to get it off my chest. I keep asking myself if I dare do this alone - appeal her section and then take her out. She's even got excited about starting school on Wednesdays - we'd arranged for a nurse to sit with her at snack and lunchtime. And now I feel like we're right back to square one.
D, now 19. Diagnosed with anorexia July '13. IP August - January 14. Day patient till Mar 14. I year in recovery before relapse
Quote
Foodsupport_AUS
Oxford mum I am sorry she is having such a hard time still. It does sound like she is very lonely there, with little to occupy her. She sounds like she is struggling still with that change. The staff also don't seem to be particularly positive, you are right, even if she is not eating desserts the positives should be acknowledged.

It is great that she is eating toast now. The question is should she be eating desserts. Of course people go through life not eating desserts, but this is a form of restrictive eating. Normally the healthy non eating disordered population do eat the occasional sweet or dessert. It does seem a bit much that she has to do it frequently but of course that is the way exposure therapy works. Part of her recovery is to learn to eat like those who are not eating disordered.
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.
Quote
melstevUK
OM,

Am I right in understanding that this is a non ED specialist unit?  The comments about d not trying hard enough do not sound the kind of comment which would be made by ed trained staff.
They appear to be working in quite a punitive manner.  It may be, as Marcella mentioned above, that they are short of qualified staff because it is the holiday period and everything could be better in the facility when the holidays are over.

However, the main thing is that she is complying.  Hard as it may be, this is only one New Year out of her life and it is better that she is safe than that you take her out - I really don't recommend going it alone if there is a battle about any food at all at home right now.  And if you go against both the hospital and your local services - it will be pretty tough. 

I understand your frustration with the refusal to allow her home leave because of not eating puddings - I for one would not willingly choose a syrup sponge as a dessert.  Is there any choice of menu at all? Was there no alternative to syrup sponge on the menu? 
Also, is d on any meds just now? I can't remember is she is on an ssri.  At my own d's last facility she was allowed a small dose of a tranquiliser before she had an increase in her meal plan and it really helped by just taking the edge of her anxiety.

Is your d able to read or do anything crafty, or do jigsaws? Part of the illness means that she has to learn the skills of self-soothing when things become stressful, and also to keep focusing on the future when the present is particularly bad. 

I honestly think it will be better in the long term to accept the limitations the unit is placing on her, however hard it might seem just now.  This is not going to last forever and is part of the process of her recovery.  Maybe you can use the time to plan for when she does come home, and work out how you can get her compliance within the home setting. 
Big hugs - don't look back, keep looking forward, keep planning, keep encouraging d to stay the course.  x
Believe you can and you're halfway there.
Theodore Roosevelt.
Quote
NELLY_UK
My D also has no home leave yet and now she seems to be making more of an effort to get better- it could change tomorrow. Harsh rules seem to be starting to have an impact. There had been little change to her previously in the ED unit. The other patients where she is now are not obsessed with calories or appearance so I can see some positives.
It's such early days for your D in this new place.
Feeling you should wait, but it's so depressing for us to see our girls struggling.
Join me at midnight in saying a big "F off to 2013"
Our d is going to bed early tonight in IP because she can't bear to be up wishing she was home. That's all that I will be thinking of.
Xxxx
NELLY D 20 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. ED/Bulimia treatmentis in the dark ages in West Sussex.
Quote
melstevUK

Nelly,

Just love your midnight toast - it really had me laughing!  So sorry for what your d and OM's d are going through, plus what you are going through as mothers.  EDs really are such horrendous illnesses.
But hang on in there Nelly and OM  - don't let either of your d's present suffering change the big picture of where they have to push through to.  It will be a different picture next New Year.  Keep that in mind.  They are still both very young adolescents and one of the biggest ways you can help them is ensuring that their lives have dreams and a future worth fighting for.  Recovery will have no meaning if a worthwhile future is not part of it.

And may 2014 bring major changes for all.

Love Mel x

Believe you can and you're halfway there.
Theodore Roosevelt.
Quote

        

WTadmin