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

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notinthemasterplan
Hi

I'm new here & like many of you am really struggling to cope. D (13 y/o) has only recently been diagnosed with AN, although looking back I'd say she's been showing symptoms since last summer. 

Anyway, it all escalated in Jan/Feb as I caught her making herself sick and took her to the gp. She started getting really difficult at mealtimes (much more obviously than before) and displaying some new OCD-type behaviour around food. We were referred to an NHS (UK) Eating Disorder Service & had an assessment there about 18 days ago.  Since that appointment D has completely refused all food and drink (she was eating & drinking ok, albeit not enough, up until that point). Unsurprisingly, she collapsed at home 4 days later (they wouldn't admit her to hosp before that) which was very scary but at least we could get her to A&E and on a drip for the dehydration. We then had to wait another 5 days before she could be assessed and sectioned & NG tube put in (she wasn't bothered at all by this).

Fast forward to now - over a week since the tube went in and she is resolutely refusing to even try eating or to talk to me about it. She is drinking a little water but only a small cupful over the course of each day.

We're currently waiting for an inpatient place at a specialist eating disorder unit, so I'm kind of pinning my hopes on that happening soon and some kind of miracle happening there. She obviously can't come home with the tube & I just can't see her changing her mind at the moment. I feel totally helpless and don't see any other option.

I was wondering whether anyone has had a similar experience - is this something a psychatrist can help with? Is there a 'lightbulb moment'? Could this situation (ie being tube fed) go on indefinitely?? Are there any options other than a residential unit?

Sorry for the long post. I just feel like I've lost my lovely daughter and she's nowhere near even starting to try recovering..
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scaredmom

hi notinthemasterplan,
I welcome you to the forum and hope you find the support you need to help your d.
It is common with NG feeds that they don't want to eat and that is what needs to happen. It is exposure therapy. Can they start with a sip or spoonful or even just a taste of food? She will not be able to talk about it. It is part of her illness. Are they getting her weight up? That is the first goal. 
So sorry there is no "lightbulb moment" Some kids cannot talk about their ED at all. (My d still cannot and won't at it has been 2 year but she is doing well). 

Most kids have been ill long before diagnosis.
Please read around the forum. Please ask all the questions you have. 
Here are some books/ resources for you to start. 

https://www.guilford.com/books/Treatment-Manual-for-Anorexia-Nervosa/Lock-Grange/9781462523467/reviews

https://www.amazon.com/When-Your-Teen-Eating-Disorder/dp/1684030439

And Eva Musby's 
https://anorexiafamily.com

Is she purging? 

How are you coping? 

Where are you located? Others near you may be able to offer some specific advice too.

Welcome, again
XXX

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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Ellesmum
Hi, welcome although I’m sorry you had to find your way here.  In the current situation it sounds like going to a unit would be the best thing for her as stressful and worrying as that feels for you.  
Right now your daughter needs to be fed safely, it is completely normal that she doesn’t ‘want’ to recover and she really can’t ‘try’ because she is being held hostage by a powerful enemy, it is rare that our kids want to recover in these early days, we drag them back.  

Your daughter didnt choose to get  sick is the truth,  at the moment she can’t think properly as her mind is affected by malnutrition, but as she is fed bit by bit she will get stronger mentally and physically.

There is another mum here Jojo in a similar position, hopefully she’ll be along at some point to update on her situation.

Keep asking any questions, you will get lots of support x
Ellesmum
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Jojo2271
Hi and sorry you found yourself here. 
My thread is on here . Title is help deciding on IP care UK... 
Our story is exactly same only my d is 14.5 and obsessive exerciser not vomiting

OK so we are now on day 12 of being on paeds ward tube fed.
My d is moving to specialist eating disorder unit on Wednesday. 
Up until two days ago she was not eating or drinking anything. 
The unit is taking her with ngt but wanted us to gently restart eating. 
We have but it's been tough. 
Today is better. 
Managed in total about 450 calories orally today.
Mostly apricot yogurt. 
The unit are amazing and have discussed the ngt out being her first goal.. They think about a week. 
A week ago my d would not have been bothered of she ever sipped water again. 
Now she is fighting hard.. Even asked for a fizzy drink tonight. 
It has and is the most traumatising time.. 
My advice.. Do not let them take ngt out and send you home. You will be on revolving door and ngt in out of hospital. 
We insisted that we were staying until transfer to unit. 
Feel free to ask any questions or email me
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notinthemasterplan
Thanks for your reply & reading list suggestions - I've got a few books already (incl Eva Musby's) and am searching the Internet for help too. There doesn't seem to be a huge amount of info about tube feeding and how to get off it though. D is refusing even the tiniest sip of anything other than water at the moment. Even the Forticip which is offered to her as a drink 10-15 mins before it goes into the tube.. They are increasing the feeds v gradually to avoid re feeding syndrome & she's currently on 1200kcals/day.. Not sure when this will be be increased so that's a question I need to ask tomorrow. 

In answer to your questions, I believe she was only purging for a few weeks in Jan/Feb, apparently prompted by us trying to get her back to eating meat when we finally realised why she'd gone veggie in the first place. 

I'm not coping well at all tbh but am trying to be the cool calm mum in her presence. It's hard and draining as my husband and I are having to be with D 24/7 at the hospital (playing tag team) and have 3 other young kids to look after at home. 

We're in Sussex, UK  

Thanks again for your help. I'm sure I'll be asking lots of questions over the coming months /years 🙄

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scaredmom
Here is a thread you may find helpful.
https://www.aroundthedinnertable.org/post/how-to-get-off-ng-9927721?highlight=ng&pid=1306464575

Others with NG experience will be around too to tell you what they did to get their child to eat. There are quite a few forum members that have used an NG. 
Can you offer just a taste of food? Are you allowed to feed her and try? Keep doing it, presenting food to her as much as possible, that will be the only way through this. Refeeding syndrome is rare and there was an article I had found that shows that quick refeeding was possible in patients and risk of refeeding syndrome not an issue:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4379764/

She can and should be refed quickly. There is no time to waste, I would think. She has been in patient for over one week so they need to increase feeds so that she gains .5-1 kg per week.

It is truly draining and so glad you and h can be with her. When you are not with her please rest. Cook a lot and freeze so that you are ready when she comes out from the ED unit. 
It is hard on the family and the other kids. Do the other children know? I found it best to ensure all the kids were in the loop. They know something awful is happening and to  name it, makes it less frightening. 

Keep asking questions. We do all wish to help. 
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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notinthemasterplan
Thanks Ellesmum & Jojo. 

Jojo, it does sound like we're literally a couple of days behind you and almost identical in the journey to this point (D has been excessive exerciser too). We've been told there may be a bed available at a unit an hour away this week (not a specialist EDU for adolescents though and they only take short-term inpatients so I'm not sure if it will pan out). Will know more tomorrow.

How did you get past the outright refusal & get your D to eat a little? We've tried everything we can think of here (and so have the nurses) but no joy. It's so frustrating. I don't think there would be any chance of D coming home anytime soon but even if there was I don't feel at all confident I could handle things at home  and I do worry about how it would affect the rest of the family. I guess that's inevitable though and will happen at some point, if not now. But perhaps I'll have educated myself and prepared myself for battle by then - I'm totally on the back foot atm.. 
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scaredmom
Please note too that with weight gain and consistent exposure to food and drinks, it gets better. It takes time. Your d has only been in a very short time. Hard to be patient though, I understand. 
XXX
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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notinthemasterplan
Scaredmom - thanks for the links and advice. I'll get on the case re upping the NG feed calories. We (husband or myself) are offering food every meal and snack time in hospital (ie not the nurses). D flatly refuses/turns away /won't sit up/hides under the covers, so we're a bit stuck. We've brought food in from home to see if it makes a difference but no joy.

No chance to rest really atm as we're either with D or driving to/from hospital, trying to keep up with work, or looking after the other 3. I'm sure it will calm down for a while if the residential place comes up so I'll get cooking then! We've been very open and honest with the other children and give them the opportunity to ask questions/talk about it regularly. But they are getting passed around a lot or being shuttled to and from the hospital and having to hang out there for hours which I'm sure they'll start to resent soon. They're not having much of an Easter holiday! 
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Ellesmum
We have all been through the food refusal, It’s a major part of the Illness and one of the hardest things to get through. It’s a steep learning curve and we’ve all used various things like taking electronics until food is eaten or conversely allowing iPads or tv if that’s not usual in the family during meal times, I’ve used bribes sometimes using a brisk tone ‘Come on then, eat your cookie then we’ll go and get you a bath bomb’  patience and persistence too, faking confidence that ED is no match for us and we fully expect the food to be eaten (and my life this is tough)
Spoonfeeding can work too, I’ve even in the early days taken d right back to babyhood with warm milk in a beaker that I’ve held to her lips while cuddling her.

The books recommendations will give you practical tips too, although my d was never IP we had a few trips to A&E and I was never above putting on a worried face (or extra worried) and telling her the senior doctor had just instructed me to tell her to eat/drink XYZ. Actually I did ask a doctor one time to give her the instruction to have a big bowl of porridge at bedtime and from then it became non negotiable and is even now., that porridge soon became a 700 calories bowl of recovery food. 

There is is no doubt this will have a big effect on your family, my advice is to try to gather your army so you are all on the same page and that everyone can catch a break sometimes.   If you learn as much as you can you’ll be better equipped for what’s ahead. 
Ellesmum
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Jojo2271
We got water in cup and straw and put it to her lips every half hr 
Sometimes she sipped a tiny bit 
It was after we had seen unit and she liked it that she started trying to eat.. The safety of knowing the tube stays in and she was staying on ward until transfer made her feel safe I think 
I will write more.. Just doing night snack at hospital 
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Jojo2271
Please don't worry about feeling like you are not coping. Today is the first day in 4 weeks I have not cried.
I have also accepted help from friends and family . And I find admitting I am not able to do everything very hard. 
So if people say "what can I do to help" give them a practical job. My mother is name taping d's clothes ready for unit and my father has walked my dog every day.
Neighbours have done shopping and mowed the lawn this week. 
I got to about day 5 of admission and decided I couldn't stay overnight anymore.
Can you leave ward at 7-8ish in the evening.? Just husband and I getting an hour drinking wine at home and sleeping in my own bed has helped. 
Plus it has given us time to discuss next steps etc away from pressured environment. 
We had a cardiac monitor on d first night to sound if she exercised but she was so weak by then she could not sit up with out fainting. 
Now the nurses check every 15 mins and her bed is visible from the desk. She wanted to stop the exercises so I think that helped her agree to things like curtains back at night etc. 
As for the unit... I'd be pushing your cahms team for a specialist eating disorder unit. 
Its the only place your d should be going. 
If NHS England have agreed the funding for tier four treatment then don't settle for a non ED unit  
You can start ringing round them yourself and asking about bed availability. 
Our cahms team were amazing at this but I'd have done it myself if I needed too. 
How it works is if there are no beds at one of the two NHS ED units (and there aren't currently  then nhse put it out to tender and private providers then can express and interest in having your d as a patient. 
As ED units are not that common, it is rare to get more than one place near enough with a bed. 
NICE says teams must place patients as near to family as possible but in our case the nearest is an hour away. 
Some won't take ngt fed patients either. 
But I'd not worry about that, once I got to grips with idea d was going straight from ward to unit it was enormous relief and the fear of "what happens if they take tube out and send us home .. I can't do this" just vanished. 
I'd push if I was you to get her a bed at a specialist Adolescent Ed unit.. That at moment is more important imo than worrying about getting her off the tube. 
Someone on here (ellesmum I think) kept reassuring me that at moment my d is safe and being fed. 
Try to hang on to that... Your d is safe and being fed. Next hurdle is the right IP care...
When you have that secured and you have a transfer plan you can push the food and fluids. For now just keep offering it. 
And keep talking here... This forum has literally been invaluable to me the last two weeks 
As for your other children... I luckily have an older d only... But I keep saying "it's just a blip in time". 
This is just a blip in their lives, your life, your d's life. 
In the great scheme of things even if you are ill for a year or two it's just a blip in potentially a 100 odd year life. 
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Foodsupport_AUS
Welcome to the forum, so sorry that you have had to find your way here. 
As others have already said, it is really normal for her to have no urge to try to get better at this stage. 

I would strongly recommend that you print out a copy of this article and take it in to the hospital. All current research suggests that your D is not being fed enough, re-feeding syndrome does exist but the intake needs to increase relatively rapidly and being on 1200 calories after 1 week is continuing to starve your D https://jeatdisord.biomedcentral.com/articles/10.1186/s40337-017-0134-6

The good news is that generally once she is better nourished she is much more likely to be keen to get the tube out. In particular feeding more down the tube than would be required orally can be a good technique, but others have tried various other things such as touching food, just taking a sip etc.. 

Your D can recover, but it will also take time. Ask lots of questions here. 

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.
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notinthemasterplan
Thanks for the reassurances that this is not unusual (as I haven't been able to find much info so far about absolute refusal for this length of time) and for the advice and article re upping the calories rapidly. I'm waiting for a call back from the eating disorder service to discuss this as it does seem that we've been stuck at 1200 for too long. And D is only drinking 250ml water or less per day which can't be good..

In the meantime, a consultant has been in to see us from the inpatient unit I'd been told about (I'm relieved to know it is an adolescent SEDU, not just a general MH inpatient setting) and it looks like D will be able to go there on Weds (still mirroring you Jojo!). They're sending info through via email later and I'm researching it online but it does sound like a good place to cater for D's needs - they just need to be satisfied she's medically well enough to be transferred there. The consultant said it would probably be a 3 month stay (although could be more or less, depending on each case), so although that sounds horrible in terms of being separated from D, it's not such a long time in the grand scheme of things and they seem confident they'll get her off the tube and on the (long) road to recovery, involving us all the way. It's a scary and emotional time for me but it's also strangely fascinating to learn about this side of life which I'd been previously oblivious to. I honestly don't know how we'd have survived this far without the NHS - obviously we're nowhere near getting this sorted yet and everything seems to take forever but I've been really impressed by the service and the communication between services.

Anyway, I just wanted to say thanks again - I'll definitely be spending a fair bit of time on this forum. Such a useful and comforting resource 😊
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Jojo2271
Oh that is so good. 
I have also been so impressed with our eating disorder team they have worked so hard. 
And while I wish we had pushed for bigger ngt volumes of feed while we have been in acute ward, at least d has not lost weight and has improved immeasurably in her mood etc.. So I just think it's another 36hrs to get through.
We had a stupid dietician who would not even come a speak with us... But told staff and staff told d.  She only needed 1800 calories so as soon as she ate she could start dropping feeds.
Staff won't count calories so say eat a bit.. 
D has not managed all her oral food but staff have dropped feeds... 
So keep pushing for more ngt
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Jojo2271
How far away is your unit?
I hope u get transfer Wednesday .. Only 36hrs to go... 
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Ellesmum
This is a great update,  good to know you feel confident about the unit despite it being a scary time for you.  They should be able to get her off to a good start refeeding while you gather knowledge for when she comes home.

jojo, your mention of the dietician doesn’t surprise me unfortunately, unless they’re fully trained and understand ED it seems to me they only understand people needing to lose or maintain not gain.  Are you able to push for more now, maybe with CAMHs backing?  Every last calorie really counts. 
Ellesmum
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tina72
I'm waiting for a call back from the eating disorder service to discuss this as it does seem that we've been stuck at 1200 for too long. And D is only drinking 250ml water or less per day which can't be good..


Getting them back to weight restoration asap is common scientific sense now and should be goal nr. 1 no matter if the food goes in via tube or mouth.
She gets liquids from tube but you are right, she should learn to drink more. As long as there is no constant gaining the calories need to be upped until there is constant weight gain. Some needed around 5000 via tube (see KLBs son). Step on their feet until they do that. Here they thought my d would gain on 1500 calories a day, too. Ridiculous. I sometimes think the team was as afraid of ED as my d...🙁.

With solid food it is mostly recommended to offer some food before every tube feeding and to ask them at least to taste one spoon ful so they do not forget how solid food tastes and they do keep chewing and swallowing. Start with a yoghurt or a baby glass with fruit and add a teaspoon canola oil to it. Incease portions slowly and try to get at least one more spoon into her than ED would allow her to eat.
Keep feeding. There is light at the end of the tunnel.
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Jojo2271
I told my d she had to keep trying to sip water at least otherwise your throat muscles forget how to do it... Swallowing that is. 
My d is super sporty.. Or was... ☺ So understands about muscle memory etc. 
Though tbh it was hard, as I think when they arw so ill they don't care about swallowing ever again 
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notinthemasterplan
Thanks guys. I've managed to get the calories upped to 1500 today (was told it would then increase to 1800 in a couple of days time but she'll be at the unit by then - hopefully - so not sure what they will decide there). They are also putting more water in with each feed as D is still only managing 250ml orally. She is being offered food and water to have orally before each feed. She just says she 'can't' even have a taste of anything and it's a battle just getting the 250ml of water in!

Jojo - the unit is about 45mins from home on a good run, so not too bad. It's looking good re the transfer on Weds as bloods came back ok and paperwork is being prepared 😊. My D is (was) super-sporty too and understands a lot about the body through doing her PE & science GCSE work. But unfortunately atm she doesn't seem to care about the possibility of muscle wastage, osteoporosis or not being able to swallow etc. I really hope the specialist unit has some tricks up their sleeve - apparently peer pressure an/or support from others going through the same thing can help... 
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debra18
My daughter did not have a tube but one and a half years ago when she became sick every single food was a fear food including salt and water. She now eats even more of a variety than she did before she got sick. And every food she eats she says "yum." Keep on top of them to increase the calories to gain weight and keep trying with the food and drink!
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notinthemasterplan
debra18 wrote:
My daughter did not have a tube but one and a half years ago when she became sick every single food was a fear food including salt and water. She now eats even more of a variety than she did before she got sick. And every food she eats she says "yum." Keep on top of them to increase the calories to gain weight and keep trying with the food and drink!


That's really good to hear Debra, thank you! I'll def be more assertive now re the calories being increased and will keep plugging away at trying to get D to eat something...
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debra18
Yes, you can do it!
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KLB
Our son was on NG feeds only for several weeks and also could not eat any food orally initially. He tried to pull it out initially and almost needed a nasal bridle but we declined it. He would only drink water, nothing else.

We started off very small, with a few bites of the safest foods plus the ng feed, then gradually increased it until we used the tactic of making the oral food look less than the ng feed would be. Didn't always work but did get him eating orally again. 

When we were discharged we managed to get a plan in place where we went to the ward pretty much every evening for an ng feed to top up his calories. He has a severe exercise compulsion and is hypermetabolic and was needing close to 8000 calories on some days to see any weight gain, which he could not achieve without the ng. That was in place for a few weeks and then we lost that plan which sent us backwards for a while. We're only just starting to catch up to where we were. 

In-patient is going to be the kick start you need I think. Our son was diagnosed last August and we're nowhere near weight restored. You can't always get the weight on rapidly and with some patients weight restoration is the first of many marathons. We've had complication after complication after complication and minuscule gains of 100, 200, 300g  or nothing each week, but slowly and steadily his weight is creeping up. I think going in-patient might have helped our progress but we had a complication regarding admission there too. 

Stay strong, show ED you mean business and use this forum to help manage your feelings/emotions. 
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Jojo2271
Hope your d's move to unit goes well 
We are on way now, my d told me yesterday she wS excited and wants more than anything to get better. 
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