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.

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Fretful
Hi. 
 
Completely new to this and apologies that it's a long post.
 
22-year-old D was in full-time employment, had lots of after-work activities and out clubbing weekends. At lockdown her work shut down as did all her activities and she's been home 24/7 since. Btw we are in South UK.
 
Nearly 2.5 weeks ago her eating and drinking gradually slowed then stopped, tried to encourage her but flatly refused and was in denial that she would end up in hospital. Eventually took her to hospital who admitted her and kept her for 1 week, pumping her full of fluids, then discharged her even though she still was refusing to eat and drink. Still refused when at home so 2 days later called ambulance as stomach pains, feeling sick, dizzy etc. Was examined and readings low but ok and suggested that we try local Safehaven. At Safehaven for 4 hours whilst nurse tried various numbers for help, in end she spoke to psych consultant who said if D was dizzy then needed medical help so take her to a&e.
 
Again admitted to hospital, examined next day by external psychiatrists, who said she was being discharged with antidepressants, which are taken orally with water. I stated D was refusing liquids but this fell on deaf ears. 1 hour later phone call from hospital saying that admitting her as her body in starvation mode. 2 days ago call from hospital saying that D is being discharged but still refusing to eat or drink. Call later that day from hospital saying that keeping her in as possibly something wrong with liver and needs scans. Yesterday had scan but don't yet know result. We are unable to visit, due to Covid19, and finding information by phone is awful (as is not being able to see her). Yesterday spoke to psych consultant who gave very little information and said D was being discharged. When phoned gastro ward she is on we were told by nurse that not being discharged but has drunk 1/2 jug of water. Found out nurse saw 1/2 jug thought 1/2 had been drunk but D had not actually drunk anything, but was correct in her not being discharged.
 
When she was admitted the first time, my W contacted GP who has referred D to local Mental Health team but they say they are unable to speak to her all the time she is in hospital. From what I can gather Mental Health apparently liaise with eating disorder unit if necessary. I find it appalling that they are unable to contact her until discharge? The last time she was discharged she was back in after two days and I'm really concerned that they won't be able to speak / zoom with her this quickly. 
 
D thinks that they are going to tube her today and is totally against this, not only scared of having tube but 'don't want them to pump me full of food'. 
 
As we are totally inexperienced in this (but are trying hard to understand and learn all we can) is there anything we should be doing or the hospital / Mental Health should be doing that we don't know about? W has been fantastic phoning hospital etc but finding it really stressful not being able to see D and trying to find out what is going on.
 
Please bear with me as I'm working so may be a bit slow to reply.
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Foxglove
Hello Fretful, I am so sorry, but it sounds like you are incredibly quick and 'on it'.  First of all, you do have rights to talk to people etc. Please Google 'nearest relative' and 'next of kin'. As the former, you can talk directly with the person in AMPH (adult mental health services) about your daughter's care. You have different rights as next-of-kin.  Communication is key. Also, is the county eating disorders services involved? there are ofen disconnects between hospital and these specialist services.  Do they know about your D?  Parents often have to push to join them up and you should be involved with the 'team'.  You say she is on gastro ward? Some are excellent, but hospitals aim to 'fix' enough to discharge, sounds like she needs specialist ED services involved. If you wish, happy for you to message me directly.  You are doing all the right things in frightening situation.
(P.S am in the south of UK)
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Foodsupport_AUS
Welcome to the forum, so sorry that you have had to find us. Dealing with an eating disorder is hard enough, without trying to deal with it when there is COVID around. Just to confirm, this appears to be a new eating disorder that has come on in the last few months? 

I am not in the UK but it does seem to be common that one team, eg. outpatient,  can't seem to do anything while a patient is inpatient. That happens here too. I know it seems crazy but it is one of the problems where systems don't always interact in the way they should. 

I am not sure how much you know about eating disorders but if you haven't already I would suggest looking at the FEAST resources pages  There is a huge amount of information present. 
Despite all the ups and downs so far it sounds very positive if they have recommended that they consider tube feeding your daughter. What she needs more than anything else right now is food which will need to be slowly increased.  It is  possible that she may need to be placed under the mental health act for this to occur. It sounds at last as though they are taking her nutrition seriously. 
Since your D is an adult there will be limitations on how much information you are able to be given, and much of this will be up to your D. Nonetheless you are always able to share your concerns about what is happening and if someone is to be discharged to your care you can also express your concerns if inappropriate. Good quality eating disorder treatment includes parents or caregivers in someone's care. In part because this is not an illness that can be beaten alone. 

Please ask lots of questions. 
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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Fretful
Hi Foxglove. Big sigh of relief that I'm doing the right things. It is scary as I feel very out of my depth. 

Thank you for the advice and I spoke to AMPH this afternoon who have confirmed that they've set up a video appointment with themselves, D and ED next Tuesday. So I feel that things are now underway, slowly but getting there. Again, thank you for the kind offer to message you, which I may take up if I feel that I'm unsure what I need to do again.

Hi Foodupport_AUS. I think that if we were able to visit hospital and chat with the people taking care of D then communications would be so much better. Of course, it would also reduce our stress levels in being able to see D. Yes this disorder came on in the last few weeks, took us totally by surprise and we have been beating ourselves up a bit that we didn't see it coming...

Before she went in for the second time, we asked D to sign a piece of paper letting the doctors talk to us about her physical condition, but not her mental condition, as I'm sure there are things she may wish to keep private. She happily agreed to do this, but has been telling us not to call the hospital so much as it makes her feel immature if mum and dad are phoning so much.

Thanks for the link. There is so much to take in at the moment and I can see that we are in for some tough times ahead. I'm sure there will be more questions too.
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Foxglove
Fretful, did not want to overwhelm you but had to reply. We all wish we had spotted it sooner, we all say we wish we knew then, what we know now. Sending you a huge high-five for being on it so quick. And don't stop calling hospital, that is ED fighting back. If this was your spouse, parent, another child - you'd be ringing lots! Right!?  Hugs X x
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Enn
Hi Fretful, 
Welcome from me as well. 
At the beginning one really can feel as if the floor has been taken away  and you are in a free fall. This is common and so difficult. 
As for communications with the hospital, keep it up. What I found helpful was to write out my questions and make an appointment to have a conversation, a proper one with the person in charge. (You stated that d have given permission to talk to you about her physical health.) That would be the doctor I would think? Then I would tell that person that you will ask questions and you then write the answers down for each. Take your time with that.Keep good records so that you can look back overtime and add more questions. I know it is so overwhelming and the first thing is for them to get the weight on anyway they can. 

Please take time to take care of yourself while d is in the hospital. Please read around the forum. Others with adult children will surely pop by as well to offer support. Please ask any questions you have. We all wish to help you and our wish is to try to make things a bit easier and more manageable for you. We have truly been there! Sending an hug and well wishes
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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Fretful
Hi Enn
Thanks for the welcome. The beginning was really hard; not knowing what was wrong with D and how to help. Neither W or I knew much about Eating disorders and weren’t sure if this was what she was suffering with as her characteristics were a bit different; also not drinking anything seemed not to ‘fit’. What did fit is the huge ED monster that appears when poked. Never heard of this until reading some forum posts here, looking for help and this was mentioned a lot!
 
I think I will write down questions and answers as always come off phone forgetting to ask something and not taking everything in. W is finding this really hard and has appoint with her gp today. D is hardly talking to her and threatening to block her and tell doctors etc not to tell her anything as a couple of days ago D got annoyed that W was phoning hospital too much. I think D will start talking to W again when she needs help or reassurance over something. ED seems to hit out hardest at the ones who love them the most!
 
Thanks to everyone for the help, advice and hugs. It makes a huge difference as you’ve been where i am, and really get what we’re going through.
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Fretful
Hi. Update on D
D has now been in hospital this second time for 2 weeks and is still eating and drinking virtually nothing. On a good day maybe a spoonful of rice krispies for breakfast, 2 pieces of pasta for lunch. Nothing for tea. Once she drunk 1 fortisip shake in one day (which was a real breakthrough) but usually much less that this. When necessary she is put on drips. They’ve threatened but she's not had a tube yet. She’s self-harmed whilst there by scratching her arms and legs and now has panic attacks when given food.
 
With regards treatment, Mental Health and ED Team did a joint video session with her 3 days ago (in the hospital, yay!) and the initial outcome was that Mental Health weren't pursing any further as she has an Eating Disorder and ED Team thought that they weren't taking her on as she has a Disorder Eating, rather than an Eating Disorder, but would let her know in a couple of days. The following day a Psych doctor said that they'd spoken to ED Team who were taking her on. Big sigh of relief. Yesterday, in her follow-up video meeting with the ED Team, they said that they didn't know what to do with her and that they would leave her in the hands of the hospital but would check up on her in a week. D was in tears to us about this as she wants to get better!
 
ED can’t discuss this with us as D has not given permission and getting information from the hospital is near-on impossible with no visiting due to Covid. Psych and Gastro doctors are virtually never available and do not return phone calls.  D asked us not to phone the hospital unless she said this was ok (which she rarely does). Of course we broke this rule a few times and Wednesday she found out we'd phoned again and didn't answer her phone to us or return our texts except to say she would tell doctors not to give out her health information to us. Lots of apologetic messages later and she is now speaking to us again, but strictly said not to contact hospital unless she ok's it. 
 
She was on a drip yesterday as Keetones high, she had to be wheeled to a quiet room for the video meeting as too weak to walk, the last time we spoke to a Gastro doctor he said she was at high risk of damaging her organs as is still virtually not eating or drinking and she has lost nearly a stone in 2 weeks. The hospital’s talking about discharging her again as they say she is physically ok. 
 
I’m scared for D. I don’t think the hospital knows how to treat her. She flatly refused to eat or drink last time she was discharged, refusing to say why, and has said if she comes homes she’s not going back to hospital willingly. She was back in after 2 days last time. Also, we don’t know properly how to help her if we don’t really know what this is. We had our hopes pinned on ED team getting involved. D is also getting very low as she thinks no one can help. I've suggested she phones Mental Health team again.
 
I know her situation is probably pretty unique but I’d be really grateful if anyone has any ideas.
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Foodsupport_AUS
I am sorry that you are still struggling to negotiate things with the hospital. I worry that you are only getting small snippets of the story, your daughter's point of view which may not be the whole truth in part because she is starving, and only small snippets of what the doctors are saying because you can't be there and she has not given permission for sharing of information. 

It sounds like your daughter may need to be detained under the mental health act, this would enable them to initiate NG feeding regularly. I am not sure what their hesitation would be. It is unlikely she is physically OK from what you are saying and I wonder if this is your daughter saying that she is. As difficult as this may be for your daughter and you it may well be the best outcome for your daughter as it would make sure that she was fed. 
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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Vicky2019
This sounds like a nightmare. Have a big hug to try and support you.
As your daughter is 16 you do not legally have any access yo her records or notes beyond what she chooses to tell you. If she hasn't given you that permission yet I would worry that she didn't want to get better.
I think I would play it like this: you will support your daughter to get better BUT she has to give consent for you to speak to medical professionals about her - the nature of ED is to hide information and try to deceive carers; this way you would be able to access the medical version of events.
I am uncertain why the ED team aren't admitting her - perhaps they are waiting for the general medics to say she is medically ok and it's a psychiatric problem, not a physical problem? Or perhaps your daughter is telling everyone she wants to get better and she will eat more when she goes home with her mum. 
I think you are doing a stirling job by still being there to support her; keep going, you will find a path through this.
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Fretful
I'm sure we're not getting the whole picture from her or from the doctors. We have permission with the medical doctors (when we have permission to call and can mange to speak to them), but not the psych doctors and I think the main issue is psych rather than medical. I can understand that she won't give psych permission as she suffered a trauma a few years back which she has never spoken to us about. She seemed really happy when she heard the ED unit was taking her on and then so deflated when they said that they weren't sure what to do but would see her the following week. Today she sounds like she's giving up.
 
The doctors have warned several times that they will use the NG tube and initially this scare helped a bit, which was when she ate tiny amounts, but now she doesn't believe them. They've said to us it is a last resort but I think that maybe they are unable to Section her under the MHA as she is 22 years old and mentally aware of the consequences of her not eating and drinking and of refusing the tube. I'm not sure but that is what I am thinking. I know before lockdown she was happy, clubbing w/e with friends, full-time work, singing in rock choirs a couple of evenings in the week etc, so I can't see that she is doing this as she has nothing to live for. She is however genuinely scared of having the NG tube as she has suffered with throat issues for years and flatly refused Endoscopy in the past because of this. She also seemed horrified that if they managed to fit the tube they'd be 'pumping her full of food'.
 
A doctor saw her today but wants to get some support or a plan together with the ED unit before she is discharged, which sounds a bit better than discharging her with nothing.
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Fretful
Ok. D being discharged tomorrow providing she is physically well. Psych phoned W and said that this is her best option; if D stays in hospital then ED team will not really do anything as the hospital are keeping her stable. If D comes home then ED team will liaise on a weekly basis and if D deteriorates and ends up in hospital again, then ED unit will have to rethink. I cannot understand why it needs to get to that stage for them to take action. Psych also said that D is not eating as she wants to lose weight and doesn't like her shape, yet ED team said D hasn't got an eating disorder. I am so confused!

D not eaten or drunk anything today and still adamant that she is not eating or drinking when she gets home. Lots of compassion, empathy, love and encouragement for her when she gets home, as well as a hug or two as we have missed her! Fingers crossed!
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Enn
I hope I have this wrong: Is she in hospital and they have not gotten any nutrients into her at all??
So what does the ED team think she has if she is not eating and drinking and she is scared of food? I am quite perplexed. Have you had a proper discussion about what YOU feel she has. They can listen to everything you say even if they cannot disclose anything about your d.
I also would consider getting a second (or third opinion) You should know exactly what they used to inform their decision and what the actual DX is. 
So sorry it is so hard. 
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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Fretful

You don’t have this wrong at all. She has eaten and drunk virtually nothing and will be coming out nearly 1 stone lighter than going in. D says to us they don’t care if she doesn’t eat or drink. But of course we only get her side. W had a very long conversation with psych doctor last week virtually giving her D’s life story.

I would love to get her in somewhere else, and someone has kindly suggested somewhere, and I will make calls but trying to get hold of places at weekends also throws issues. D sounds so low now that 3 weeks spent there in total and zero progress. She wants us to promise we won’t call ambulance if she deteriorates as no point going back there and would rather struggle. She is still in denial that this illness is so dangerous.

In the meantime we’ll try to encourage her to eat as best we can when we get her home. 

 

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Enn
Dear Fretful, 
I am hoping things are not too difficult at the moment. I really feel for what you are all going through. 
Sending a hug and strength and the magic to get your child the help she needs and deserve.
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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deenl
Hi fretful and welcome,

I am so sorry that you are in such a difficult situation and that it is made even more difficult by the coronavirus restrictions. There is a huge learning curve for family and loved ones when coming to terms with this illness. I don't want to overwhelm you so I will just point you to this article which really helped me to understand why an initial shortage of nutrients caused such a spiral downwards for my son.

Here are links to our resources for Meal Support and tips for helping your child to eat

Fretful wrote:
She wants us to promise we won’t call ambulance if she deteriorates as no point going back there and would rather struggle. She is still in denial that this illness is so dangerous.


It is very normal for us as parents to try to ease our child's distress. We will promise pretty much anything. My son used to get so distressed when we tried to support him to eat more that he completely stopped eating. I fell into the trap of thinking it was better to ease back and have him eat something rather than nothing. It is obvious now, but was not when in the thick of it, that this is not a good tactic for the longer term and was just prolonging the illness. It is very difficult to maintain our normal relationships with our children when they are in the depths of the illness. We need to learn how to tolerate their feelings of upset, fear and anger and to do the right thing in spite of it. They really need us to be the wise ones because they have lost all objectivity. So I just wanted to encourage you not to hesitate to call the ambulance if you feel the need. Your daughter will possibly be mad but she will be alive to be mad at you which is by far the better option. Better safe, than sorry was my motto.

On that note, you will also need to be careful about self harm and the possibility of suicidal thoughts. Our son experienced both and we read up on websites in order to find the best way to ensure his safety.

Wishing you strength and courage,

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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Fretful
Great to have her home. I was really surprised because she has started eating and drinking. Not eating very much but is resolved not to go back in hospital again. She is very very conscious of the amount of calories in her food and drinks, which she has never said before, so I guess this is good that she feels relaxed enough that she can talk about it, but tricky to get her to eat very much.
 
Her work has asked if she can go back part-time in a couple of weeks’ time, which she’s excited about and gives her a goal. We’re starting with small portions of what she wants and will try to slowly ramp them up. If this doesn’t work we’ll try something else. I’ve not yet tried the magic plate method, as she is an adult and I know she won’t react well to it, but I know it’s there. She’s got a stock of Fortisip shakes she is drinking too.
 
I really thought it’d be like the first time she was discharged when she refused to eat or drink anything, so a huge sign of relief, and last night I had the best night’s sleep I’d had in weeks. 
 
I know we’re just at the start of recovery, but today it feels like life is slowly getting back on track. Thanks all for the advice, support and magic. That link on negative energy balance made total sense too.
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Foodsupport_AUS
It is great that she is eating at home. Small amounts are always worrying as the risk of recurrent medical instability is high. 
Could you sit down with her and make a plan for meals and snacks that she will agree to? Sometimes making a plan ahead separate to meals is helpful, your role then would be to sit with her while she eats for support, remind her that this was what she needed, not what she is scared of right now. That could then be increased over the next week till it is looking more normal in volume? Fortisip is great as a meal replacement if she is struggling eating. 
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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Fretful
Thanks for the plan idea. I made a stupid stupid mistake which I didn't even think of until too late that I didn't hide the scales. She is refusing to eat or drink today and she said that she has weighed herself and has put on weight since coming home. No matter how much reasoning (weight changes day to day etc) we try is encouraging her. Can't believe I didn't think to hide or throw them away!
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MKR
Hi @Fretful,

A belated welcome from me, who has been following your thread.

Re the scales: please put it down to experience so you can dust yourself off and move on.  To get on with refeeding, keep reminding your daughter of the part-time job and the level of health required.

Is her employer aware of her condition? Some are very supportìve, but this is still a novel area for many.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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Fretful
Hi MKR and thanks for the welcome. I'm not really sure how her employer will be as this is the first time they've wanted her back after lockdown and I don't think she'll be ready to go back to work that soon. I think she has a long way to go before then.

She's still refusing eating and drinking, even a sip of water to take meds. She was taken yesterday evening to a&e, given iv fluids, and discharged at 2am. W has just taken her again after medical advice to take her as risk of dehydration.

W phoned GP today who phoned ED team to try to find out why lack of action. ED team don't think they can do much as don't have inpatients, but are video calling D tomorrow for weekly chat. W also phoned Mental Health team again as D is self-harming and said today several times that she doesn't want to go on. Again, they are calling tomorrow. D also had huge panic attack when I brought in a small plate of food today and got very distressed.
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MKR
Hello again, 

Sorry to hear about this. 

While this is out of my depth (our family have no experience with self harm, but sure know how quickly our lovely child was transformed by ED), I hope you can follow the goid advice above to call for higher level of care, and in the meantime keep an eye on your daughter. I hope you can get the Mental Health team on board. Your daughter has eaten so little over the last 3 weeks or so, she needs urgent intervention.

I am thinking of you and sincerely hoping your daughter gets the appropriate care, so she can start recovering her weight. 
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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