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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Toniw
im in the uk. My 12 year old D was diagnosed with anorexia in February this year. She had a 18 day stay In a general children's hospital in March and we were told she would have to be an inpatient but they allowed her to come home until a bed became available somewhere. She was eating small amouns of food and drinking fortisip supplement drinks in hospital and at home. She went in a specialist eating disorder hospital nearly 9 weeks ago and she hasn't eaten anything she's just drinking supplement drinks. The hospital she's in have never had anyone not eat for this long. Does anyone have experience of this and there child has started eating again and how did you get them to do it
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franob
Just wanted to say hello. We are currently waiting for an inpatient bed for our 14 yo daughter. She hasn't eaten for months either but won't drink the fortisip either! She is at home with us after 15 days in a children's hospital but with an NG tube. I can't offer any advice but wanted to tell you that you aren't alone! We are unsure what the eating disorders unit will be able to do to shift our daughters total refusal to put anything other than water in her mouth. It's so upsetting isn't it?!

I hope someone comes along who's a little further along soon xx
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melstevUK
Welcome Toniw.  Sorry you needed to find the forum but at least you have found the best resource on the internet to learn how to help your d recover from this horrid horrid illness.

Is your d at least putting weight on through using these supplement drinks?  That would be my biggest concern right now - although I would also be a little concerned that the ed unit haven't made a bit more progress, especially as she had been eating small amounts of food previously.  Maybe they are concentrating on weight gain first and foremost.  Is it a well known unit?

There have been parents with children or young adults who have gone months without solid food so it is not unheard of.  As for getting your d to eat - I would have expected the hospital staff to get things moving at some stage - but I suppose it depends on how ill your d was initially.  If her weight had dropped very severely, they may be taking things more slowly or cautiously. 

It is distressing.  It may be worth asking your d's doctor or psychiatrist what the plans are for the next few weeks or months.
Believe you can and you're halfway there.
Theodore Roosevelt.
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Toniw
Yes she's putting on weight. She's in riverdale lodge in Sheffield. When she went in they took away the fortisip because they thought she would eat she spent most of the day in the dinning room but refused all food. This went on for 2 weeks then they brought the fortisip back and she refused that so after 3 weeks they admitted her to the children's hospital to have an NG tube fitted this made her drink the fortisip because she didn't want the tube using, this has now been taken out and she is still drinking fortisips but still refusing food. She was at a safe weight when she first went in and they have told me they have never had anyone refuse food for this long and they have no idea what to do. I think I have made a big mistake sending her there because at least she was eating some food at home
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Toniw
Franob thank you for replying. I was beginning to think she was the only one completely refusing food, this is the most horrific thing I've ever been through and I'm beginning to lose all hope xxx
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franob
Oh no, you certainly aren't alone. My D was only eating about 30 calls a day before being admitted to our Childrens hospital (Bristol) but once there she ate nothing, they put the NG tube down as a result and there it has stayed. She says she can tolerate her tube feeds because someone else is putting the calories into her, she's got no say in it. We are the first UK family to have an NG tubed anorexic at home and it's far from easy but it's keeping her alive! We are waiting for an ED unit bed somewhere in the UK that will take the tube because Bristol's unit doesn't. As much as I like the tube because it's getting her physically more stable, it isn't getting her to eat- she hasn't eaten for anyone since the day she was admitted and I have no clue how that'll be tackled by the unit she ends up at because Drs, nurses, us, other family members, RMNs etc etc have all failed to get her to eat anything for so long- I just don't know how they'll break the cycle of not eating at all, let alone get her to eat meals that will keep her weight steady...

I'm no expert, but it sounds like your D was sufficiently afraid of the tube to consume something, could the unit not use that fear with every meal? Do they 'take' tubed patients? Eat within 30 minutes or be tubed might budge her to eating real food, no idea if they'd skip the drinking of the fortisip that is offered normally in their circumstances.

Don't stress about her being in the unit vs at home. My daughter was eating minuscule amounts and isn't now, but it wasn't enough to sustain life, let alone get better. I'm sure your daughter will come through, just like mine will. Huge hugs xxx
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melstevUK
Toniw,

'I think I have made a big mistake sending her there because at least she was eating some food at home'

It is easy to have doubts about decisions when things aren't going as well as expected but ultimately weight is going on.  Was weight going on at home?  She may have been at a 'safe weight' but she was still very ill.

If the staff are having doubts about where they go from here, can you try reminding d that she will be in hospital until as such time as she learng to eat properly and that you won't be taking her home until then.  Staying calm but insistent that d will have to stand up against ed at some stage may help.  No pleas, no asking, just insistence that you expect her to start taking some solid food.  Don't discuss how or when unless she asks for guidance (unlikely) and state that next time you see her you expect her to have made a start.  Try and stay as unemotional and unshakeable as possible. 
If the staff are expressing doubt that will keep her where she is. But as weight goes on her thinking will improve. 
Scary stuff but at some stage it WILL get better.
Hugs.  x
Believe you can and you're halfway there.
Theodore Roosevelt.
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Toniw
I've told her until she eats she cannot come home, she won't talk about how she feels or why she won't eat she just completely closes up when her ed is discussed she just says it's harder there there's no distractions like at hospital and home. She isn't been offered solid food at the moment which I don't think is the right thing because they want her to trust and talk to the staff more. She was loosing weight when she was at home but we weren't given any help when I brought her home from hospital no tips on how to get her to eat more and I didn't have a clue then I've read a lot more now. I don't think she will eat in there.
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Hebrides
Hi Toniw,

I really feel for you and you D - sounds like her ED is SO stubborn... My D has been in both a general paediatric ward (2 x month long admissions),and a 10 day stay in an adolescent psychiatric unit while waiting for a bed in.... Riverdale. She transferred there last Tuesday.

Each time she has had a change in environment, she has struggled to eat for a time - though nothing like what you are experiencing. It's almost as though she has to settle in a bit, get to know the staff a bit, reduce the anxiety over being somewhere new a bit, before she can eat. However, each time she has started eating after a few days. While in hospital she had an ng tube fitted, which was used early on in each admission as she had restricted massively for the days preceding admission and was medically unstable. She was never able to tolerate supplement drinks, either in hospital or at home. As time went on, she became more compliant with the hospital's meal plans - but I know it was easier for her to eat because she had the tube in. She said it took away the choice and responsibility for her of eating, so she felt less guilty about eating - she knew that if she didn't eat, the nutrition would go in down the tube. She was unable to keep it up at home, despite our best efforts and 100% commitment to refeeding - it was harder because she had to choose to eat.

Sounds like things are different for your D.

Obviously we are newbies in Sheffield, but I would try to continue to voice your concerns with the staff (from what we have seen so far, they seem very approachable). Is there a reason why they are not offering your D food before supplements? I wonder what distractions there were in hospital which helped her eat? It is key that the weight is going on at this stage- she is clearly very ill -  I suspect it's more vital her weight continues to go up than whether it's by tube, supplement or real food, though obviously it will be the goal to get her eating asap. 

My D also finds it hard to share much about what is going on in her head, what ED thoughts are really saying to her. Sometimes she will say things that suggest she wants to be get better, wants to be rid of this illness - but then it will become clear at a later stage that she was saying what she thought everyone else wanted to hear and ED thoughts/behaviours are still very entrenched. At this stage, the nutrition needs to come first -with no expectation of motivation/insight. That will come later as they move along the road to recovery - I hope!

There may be others on here who have experience with sufferers who refuse to eat over such a long period and will be better placed to offer you advice - although our D has restricted over many months (starting in Feb 2014) she has continued to eat a reasonable amount, other than the few days preceding her admissions - she just got rid of it with hours of compulsive exercise.

It is such an awful and complex illness and it affects the whole family. I hope you can use the time she  is in Riverdale to recharge your own batteries. Hang on to the hope that things will get better - as so many stories on this forum of people who are further along the ED journey will testify.

If you would like to, feel free to direct message me.

Sending you hugs and warm support.

xx

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...
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Toniw
Hi Hebrides how do I direct message you
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melstevUK
Toniw

'she won't talk about how she feels or why she won't eat'

Very sadly this is the nature of the beast.  She won't eat (or can't eat) because the illness won't let her.  In all probability there is a voice in her head telling her not to eat.  This isn't like schizophrenia or a psychosis, it's the way the illness presents in many, many cases of anorexia nervosa. 
Your d is very young and, however frustrating it is, it is better not to try and imagine you can 'reason' her out of the illness, or find any reasons for feeling the way she feels.  The illness, again by its nature, makes the patients/sufferers very secretive.  It can be years before they open up and talk about it. 

You can love her and support her, and insist on supporting her on a recovery path.  These are bewildering illnesses but the best way of thinking about them is that our children have a biological and genetic susceptibility to going down an ed path, if weight is lost or not enough is put on during puberty.  Keeping lines of communication open by talking about 'normal' things such as friends and family and daily activities can help enormously in maintaining a sense of normality through everything.  Particularly when everything seems anything but normal.
There is no recovery without weight gain, and this needs to be a constant goal in her treatment.  The rest will follow at some stage - even if not as quickly as you would have it.  It takes a long time to accept, after the initial shock of the diagnosis, that there is no quick and easy route through eating disorders.  But you will at least get a lot of support and advice from forum members - who have all been there, and can totally empathise with the horrendous time you are all having.
Believe you can and you're halfway there.
Theodore Roosevelt.
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Bottle
Hi, I haven't read all of the replies but you're not alone. There are quite a few UK kids at home with ng tubes. My D was tubed last may in a hell of a state and it was a very dark time but the tube has been very easy to manage at home. The community nurses visit often and manage the tube change but I am trained to do it too and the gp primary care service pay for the feed from a company who deliver to us monthly. Lots of children in the service we are under have tubes at home I'm not sure why another parent has been told they are the only one-how isolating for them.
My D ate no food for 7 months and as the weight went on via ng she became herself again in many ways, then eventually, through working wit a new person and a bit of CRT she took a lick of baby puree. That was December. She sets goals for the week and rigidly sticks to them and just that small change weekly has now built up to a normal breakfast and lunch and a small tea with just an evening ng feed. It's a long haul but that's fine as long as it's going the right way. She's never been IP despite everything at the beginning and I thank goodness for quick weight restoration with the tube. Her goal is to get off the tube mid July so she'll have had it 15 months.
Hope that's useful x
Bottle
D2 RAN as part of Pervasive Refusal Syndrome with a history of not walking for a year and being non verbal for a short while too. Considered to be Aspergers by everyone that has worked with her and by us but still awaiting a diagnosis that'll help us access support services she needs.
D1 recovered RAN and D3 doing pretty well considering the mayhem around here!
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Toniw
hi Bottle, thank you so much that has really helped and given me some hope. How did you get reffered for the CRT I'm very interested in trying that. I've had a quick look online but I've never heard of it before.
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Bottle
Hi , well we were very stuck and 6 long relentlessly determined months of trying to get her to even touch a spoon had failed. Under a higher tier service. Her sister had worked very successfully with a local ED nurse who felt originally that she wouldn't be able to work with D2 because D2 has anorexia as part of wider pervasive refusal syndrome but because they felt strongly she shouldn't go IP they commissioned the local nurse to try some CRT with D2. The local and higher teams are working alongside each other which is great. The nurse just started with the game RUSH HOUR as a demo of how we are so stuck and it's awful but if we make the same moves we stay stuck. We have to make different moves to get unstuck. I would thoroughly recommend the game which we have had for ages but not used therapeutically till now obvs! Just playing it at the table seemed to make her thinking shift a little. And ask who is trained. Our local team were trained before the higher tier team which is nuts.
Bottle
D2 RAN as part of Pervasive Refusal Syndrome with a history of not walking for a year and being non verbal for a short while too. Considered to be Aspergers by everyone that has worked with her and by us but still awaiting a diagnosis that'll help us access support services she needs.
D1 recovered RAN and D3 doing pretty well considering the mayhem around here!
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Hebrides
Hi Toniw,

If you hover over and then click on the username in the left hand column, you will then have the option to email me.

I look forward to hearing from you - remember there are lots of people going through what you are going through now, and lots who have come out the other end of the tunnel and whose children/partners are able to live totally normal lives. It's hard to remind yourself of that when, like you and I, we are very much stuck in the trenches, but for me reading about others' experiences and being able to draw on the collective wisdom and support here have made a huge difference. Especially on the really bad days...

xx
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...
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deenl
Hi Toniw,

I really hope that your d is making some progress.

There are some similarities to our s. He was ip for almost 6 weeks and lost 2kgs! He refused almost all food, nutridrinks a complete no-no and had to be held down to get ng tube which he always immediately pulled out again. His mental and emotional state were deteriorating so much that they agreed to let him home to us. He was in a very serious physical state. His BMI is 11!

So what helped. I'm home all day anyway. Providing a calm supportive home has enabled him to eat a minimal amount to stop the weight loss but for a teenage boy staying still is going backwards! Our biggest insight has been discovering that he is a Highly Sensitive Person (HSP) that is his senses are vastly more sensitive so somewhere like the clinic was completely overwhelming to him.

Warning!! We have constant medical monitoring - I bought BP monitor myself and take his vital signs frequently and we meet his ED doc every week. Any medical emergencies are handled agressively to preserve life.

But we are still only beginning the journey of recovery. As I said we now have to get weight on him. The tactics that are recommended for parenting a HS child are super hard to apply to some one with an undernourished brain and all the emotional blockages and lack of logic and insight that come with an ED. We are gathering lots of info from all sorts of sources and really trying to tune into our parental intuition. But it's really scary that's for sure. And I've really no idea if we are on the right path.

Anyway, just hoping something in our story might help you but if not just remember to believe you know your kid best and to keep searching for help that fits your family. Best of luck.

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, no progress. Medical hosp to kick start recovery Feb 2016. Slowly gaining at home, seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • 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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Toniw
I fetched her home against medical advice towards the end of June and I got her eating again it was difficult but we did it,she's now on a mixture of food and fortisip supplement drinks everything was going ok. A few days before Xmas she self harmed for the first time and tried to jump in front of a train while she was with friends,I took her to children's Hospital and we stayed over night and she had a mental health assessment the next day with camhs they said she could come home as long as I kept an eye on her which I obviously have done. She's now very angry with me always shouting at me not happy that I won't let her out of the house only to school and self harming is getting worse. She says she doesn't want to die but when I secretly read her diary it says she can't get suicidal thoughts out of her mind and anorexia is telling her to cut herself. We used to be so close now it seems like she hates me. I don't know what to do,if she goes back to an ed hospital I know she will stop eating again. She won't talk to anyone I've told her if she talks we can help her but she won't
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deenl
Toniw, we are in a very similar situation. My son of 10 was on closed psych ward for 5 1/2 weeks and stopped eating, fought against ng tube and pulled it out all the time. He too was on the way to the train tracks and has his suicide notes written. 

We brought him home and he is eating a little everyday and his emotional state is somewhat calm. But he is hugely underweight, in danger of damaging internal organs and I have to monitor BP/pulse/temp at home to ensure he is not in immediate danger of dying.

My S hardly talks at all. Doesn't know what he feels and is incapable, as far as I can see, of doing anything to help himself. 

We are at a crossroads. He has always been under the outpatient care of the ED team and sees his medical ED pediatritian every week, has medical tests as needed etc. But he is living only a half life and must gain weight. But how to do it is the question? Medical hosp, back to closed ward and of course, we are still trying to increase food at home. We haven't been able to get him to eat more but now he just has to. He and we need to see that he is starting the journey to get better. But we too are very afraid that things will get very much worse before they get better. I am beginning to think that for my S there is no other way. H, doc and I were only saying that we can't let our fears of making it worse/harder for him stop us from doing what he needs to have a life worth living.

I am struggling myself so I have no great ideas for you, only the comfort of knowing that someone else is in the same place as you.

I have read here on the forum that an increase in self harm and suicidal thoughts can occur during refeeding. It is almost that their emotions are coming back to life. From what I can make out the only thing to do is get through it and keep them safe. Consider all options again in case a previously disgarded choice is now the right one as the situation is always changing.

Wishing you strength and inspiration, luck and determination!

Dee
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, no progress. Medical hosp to kick start recovery Feb 2016. Slowly gaining at home, seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • 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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Trytrytry
Just an aside and probably way down the list of priorities at the moment. My d was not eating, on TPN for long time. Due to lack of use her teeth started to become loose - that is what the dentist said anyway. So she would chew gum.

My non-ed d, After not eating for so long for non-ed reasons, had no ed, but found the mechanism of chewing and swallowing very difficult, and had some speech therapy.

I think even if your d is not eating, she should be served food with an expectation to eat. Not serving her anything to eat or drink is sending the message that it's ok. The food doesn't need to be served with any pressure but if one day, she wants to try, - I can't see her asking for food which she would have to at the moment. Maybe a small amount, not overwhelming but it should be given with the expectation she will eat/try. Would she let you spoon feed her something bland like puréed apples, mashed potato, or anything.

Have they tried giving some sedating meds and giving food?

I don't know whose d it was above who would only drink due to the threat of Ng - trying eat food or Ng (no ensure option)
I want a realistic dr and team, not someone who says what I want to hear and not a 'touchy feely nice' dr that doesn't have success.
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Toniw
deenl, I'm so sorry we're all going through this. It's a living hell seeing you child go through this isn't it? I hope you find help for your son very soon. If you ever need to talk message me, Toni x
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Morgana
Hi, my d has been in ip for 3 months. She hasn't eaten for over 2 months, she has a combination of ng tube feeds and drinks an ensure plus for the afternoon snack. Her weight has been up and down. Every time she gains she finds a way to lose. We've not really had a chance to see what happens with regular weight gain but it is my belief that once she starts getting near her target weight her brain will be healing and she will start to wean off the feeds. I know it sounds surprsing that she hasn't gained in that time, but she was refusing feeds, then compliant but secretly exercising or both if she could get away with it, and because they weren't seeing her exercising in the night they didn't believe me it was possible! So frustrating, but this week they've just put her back on the highest level of observation and she's been having all her feeds for 2 weeks now, so she actually had a gain today!

I am constantly fighting for them to keep tube feeding her and not challenge her to eat food yet. She has only just the last 2 weeks started having 100% of the feeds and to me the priority is weight gain, however it happens. Get the weight on and then sort out normalising eating later. I know they worry the longer she's on the tube the harder it will be getting her off it but I can't see her eating food until her brain heals, which won't happen unless she has the tube feeds.

15yr old d. June 2014 stomach pain. Medical investigations until Feb 2015, referred to CAMHs dx food anxiety. Kept restricting and losing weight until July 2015, medically unstable. Began intensive re-feeding at home. Re-evaluated by psychiatrist, dx Autism Spectrum Disorder and Atypical AN.
Found out it's actually Typical AN.
IP from Oct 15, ng tube Nov. Re-started eating food July 2016. Discharged from IP August 2016 97% weight for height.
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