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.

Jojo2271
Hi 
I am new here. 
D aged 14.6 and been losing weight and obsessively exercising (unknown to me) for about 6 months , also used veganism as a cover for calories restriction.
We had nightmare three weeks while we waited from seeing gp to seeing cahms. She lost 3kg in that time.
We arw now 11days into fbt.. And I feel we arw failing. And yesterday she collapsed and fitted a her bld sugar was 2.2. She hadn't drunk anything for 48hrs and had eaten half a sandwich.
She has lost 1.2kg in this time of fbt.
I have been at home 24/7 with her and have speed read Eva musby book and spoken to ABC... We are doing everything we are told but she is not eating 
She is so distressed and sad and just sits silently crying.
I feel such a failure, all the recovery stories and books say keep feeding them, put food in front of them and make then know there is no choice etc etc. 
I have done this for 11days and she just can't eat it.
And after we went to cahms and it all came out into the open she has practically stopped drinking too. 
I sort of want IP to try to get her refed and because I am overwhelmed but our cahms team keep telling me to just keep feeding her... I  am near losing my temper with them from sheer terror and exhaustion that I can't, that it doesn't work.... 
So apart from any advice on how people navigated these first few weeks and anyone used IP around Herefordshire, Gloucestershire , South Wales, Bristol area... Though we would go anywhere tbh. 
Quote
Ellesmum
Hi, welcome and I’m sorry you need to be here. I think we’ve spoken elsewhere and if so I’m glad you came over.

Do lose your temper with CAMHs is my advice tbh, be demanding- your daughters life depends on it.  CAMHs should be teaching you how to refeed but tbh a lot of us end up educating them.  

If shes refusing all food and drink then she needs to be in hospital, and all her vitals checked.  

I have been in your shoes, many trips to A&E, battling with CAMHS etc so I completely understand.  

Is is there anything she will eat at the moment? I take it she’s out of school? Do you have anyone that can come and support you (grandmother perhaps?) 
Ellesmum
Quote
Jojo2271
Thankyou, you may have given me link to this forum via another forum.. If it was you thank you so much. 
We arw in paeds ward now and she is stable, her pulse and heart rate and bloods all normal... The ward staff keep saying . Oh she is not critical... But then they tried getting her to drink and failed so  12hrs after she collapsed and fitted they finally put ngt down and gave her fluids  
I  am terrified they will just send us home as she is re hydrated. 
Cahms nurse coming in at lunch and I am going to be tough... 
I have read Eva musby but felt conned as her d was refed as IP and they had an Ed nurse come home for every meal on home leave... 
I have been at home with her since first cahms appt , luckily work have been amazing. 
My husband wants to do it with me but my d is finding him too noisy, clumsy in his words and actions and patronising... Its causing me stress as he feels pushed out. To make it worse I was about to ask for a separation... So I am also finding his support difficult to accept. 
He is a good man and no nasty issues .. Just not in love with him anymore. 
Quote
Ellesmum
Yes that was me, 

Very difficult for you re: your husband, I wonder if you could give him the practical jobs right now, the grocery shopping, cooking etc. 

I’m just going to give you a few things that helped me push through and you can take or leave anything.  At my daughters worst I had to fake confidence and I had some success by reaching her ‘inner baby’  so I became ‘mummy’ again as I would have when she was tiny.  When we got back from A&E I told her I was going to tuck her up on the couch, I even fetched her teddies and told her I was going to make her yummy hot toast because she was a poorly little girl and that what mums do. A real ‘mummy knows best’  she had the toast. 

Another time we had a pep talk, I told her I understood she felt her anorexia was a friend and she wasn’t strong enough to stand up to this bully but I was and I was in charge and there was simply no option but to eat. I caught a look of relief on her face and grabbed that chance. We had this talk many, many times.

Other occasions we’ve stood in the garden yelling at ED to eff off, leave us alone etc. Crazy but yep, that helped too.

I had a private word with the doctor at A&E to tell my daughter she had to eat this and that, my d was more inclined to listen to an authority figure than me.  This included a bowl of porridge at bedtime, it helped her sleep and I could add all kinds of calorific things to it.  
Ellesmum
Quote
tina72
I see you already opened your own thread so forget my words on your other post 🙂.
It is normal that you need some weeks to learn how to get her to eat. It took us 6 weeks to find out. It is a process of learning by doing and try and error.
First you need to stop all secret exercise. Sleep with her and supervise her 24/7. Is she vomiting?
What happens if you put food in front of her? Did you already try spoon feeding (I am not kidding, that works in some cases even with young adults)?
Keep feeding. There is light at the end of the tunnel.
Quote
Ellesmum
Yes, I’ve done spoonfeeding too, and d sleeps with me. 
It is so true it takes time to learn to feed and a great deal of courage. 
Ellesmum
Quote
Foodsupport_AUS
Welcome to the forum, sorry that you  have had to find your way here. There is a very steep learning curve with re-feeding, and sometimes it really does have to be inpatient. They are just to sick to eat at home. At the same time sometimes an admission to hospital really can kick start things, some times they can use their experience to motivate themselves not to go back. 

For us there was no magic to getting her re-fed at home initially. We had numerous hospitalisations for medical instability - eventually she was able to work at staying out. 

Not sure where they admitted her but wanting to check they have done appropriate admission bloods and are assessing for re-feeding syndrome. Have they got her to be eating and drinking enough to start to gain weight? 

I know how hard it is to oppose the staff when you feel she needs to stay longer. When she is discharged home one rule of thumb that many have used is no water for 24 hour or no food for 48 hours earns a visit to ED for at least assessment. 
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
Jojo2271
Thank you everyone. 
To answer some questions, yes she has been sleeping with me, even asks me to go to the loo with her. 
We had bloods and ecg three times last week as an outpatient and yesterday in a and e. 
I have done the I know best, I am stronger than your Ed, I am your mummy talk a lot.. She told me it is not helping. 
We have had tiny flashs of hope she ate a veggie subway on Sunday and Monday told me how nice it was, how she enjoyed it . But then after that admission she just nose dived... And now has not spoken except to say her tube hurts since.
Please keep giving the tips, and I value the support. I will try the you arw ill and mummy is going to make you some... Xyz.. Tactic. 
With food she sits at the table and puts her head down and cries... Doesn't argue or get angry or fight, just sits so shut down and sad. 
I say "come on, pick up your fork, give it a try, you need to eat this, it's safe". And she sometimes puts fork to lips.. 
Sometimes kicks fork. 
But most meals after 45mins she is crying 😢 and so  I 
Its heartening to hear others had hard starts, some of the books and stories make it seem easy.. You just put food in front of them and "make" them eat it. But I don't know how to do the "make" bit... 
Quote
Jojo2271
Ellesmum... Just seen your pm.. Thank you again. 
Quote
Ellesmum
Jojo2271 wrote:
Ellesmum... Just seen your pm.. Thank you again. 


You’re welcome,

its true, nothing about this is easy and nobody ‘just’ got their child to eat without a battle.  
I think, for me this forum was the place I could really educate myself and draw on treatment protocols from all over the world as well as hear real life advice and experience. It was this that gave me courage to fight for appointments, require eating and argue with CAMHs and doctors when necessary. There’s no magic wand unfortunately but the more you learn the more you know. 

No failure either, we are unqualified people expected to do life saving work we are neither trained for or signed up to do.   
Keep asking questions, any question because there will be someone around to support you, encourage, give ideas or advice pretty much might or day.
Ellesmum
Quote
tina72
Jojo2271 wrote:

With food she sits at the table and puts her head down and cries... Doesn't argue or get angry or fight, just sits so shut down and sad. 
I say "come on, pick up your fork, give it a try, you need to eat this, it's safe". And she sometimes puts fork to lips.. 
Sometimes kicks fork. 
But most meals after 45mins she is crying 😢 


Try to ignore the crying (I know that is hard) because it is a tactic. ED has learned if I cry at meals I do not need to eat.
If she is not able to get the fork to her mouth do that for her. Spoon feeding works often better than expected. What about liquids? Often it is easier to drink calories at the start. Can you ask her to drink a smoothie or a milk shake?
I think you already know what to say and what to do but need a light bulb moment to see that it works. Try to fake that you are totally convinced that it will work and that she will eat today. You are her mirror. She sees and feels your fear. If you are afraid of ED and her reaction to food, she will be afraid of it. If she sees that you are the big boss and stronger than ED and you totally know what you do (I am sure you feel you are not) then she will start to eat. Try it again and again until you see what strategy works in your home. Eat in front of TV, play Ipad games, read a book together, do crosswords, what ever distraction might work.
Keep feeding. There is light at the end of the tunnel.
Quote
Foodsupport_AUS
Quote:
I have done the I know best, I am stronger than your Ed, I am your mummy talk a lot.. She told me it is not helping. 
We have had tiny flashs of hope she ate a veggie subway on Sunday and Monday told me how nice it was, how she enjoyed it . But then after that admission she just nose dived... And now has not spoken except to say her tube hurts since.

Sometimes these things work. Sometimes none of it works. Even if she says it doesn't work, the question is does it get the response you are looking for with respect to eating. My daughter was less likely to eat if I offered many of the suggestions here, so it is definitely not one size fits all. If you find something that seems to help her eat though go with it. I tended to find just sitting with her and saying nothing was as good at getting somewhere. She knew I wasn't going anywhere. 
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
Jojo2271
Yes sitting silently works best.. I think. 
Just had thought I had to say all those things  
We were going to take tube out and try refeeding on ward.. As she is hating tube and wants to be home. As she said to cahms team. 
Then I go in to talk to her and she says she doesn't want tube out, is scared it will have to go back... Also scared of being at home, said feels safe in hospital.
I have told her we need to see her eat and drink then with tube in... She is saying she doesn't think she can do it... I am saying yes we can...its like a ever decreasing circle 
Quote
melstevUK
Hi Jojo2271,

So very sorry to hear of your nightmare - it really is a horrendous place to be, the beginning of this journey.

You write that you are receiving FBT - have you called it that because you have learned about it on here or another forum or have CAMHS told you that they do 'FBT'.  Refeeding at home is definitely not the same as FBT, when the clinicians should be supporting you by ensuring that your d gets the message that she has to eat, and follow your instructions about what and when to eat as you are the parent.  
I am disgusted that they did not give you any instructions about when to take your d to hospital - not eating or drinking for 24 hours is a medical emergency and if it happens again, please do not hesistate to take her back to A and E.  It is another way of ensuring she (or ed) gets the message that you mean business.
The worst part of it all is seeing our kids suffer so much - it is heartbreaking.  However, often they forget a lot of experience about when they were really ill so try not to let it get to you, as hard as that is.  
I agree with Ellesmum - lay into CAMHS hard if you continue to struggle and tell them that refeeding at home is not the same as FBT and if they have been trained in it, why are they not using it properly? 
You have been given good advice by everyone above.  Sorry to hear about your h - men often can't find the right tone or intervention that works and so often it falls on the mum to do the hard graft of refeeding.  Just ask him to back you and what you are saying with a 'Mum's right, mum knows what she is doing' kind of comment which at least puts two against one in terms of fighting the illness.  You don't want the illness to leave you in disagreement in front of d - it can be very successful at pitting those involved against one another.  
I hope you can get a few days of success because it will really help.
Believe you can and you're halfway there.
Theodore Roosevelt.
Quote
scaredmom
Hi 
Welcome!
i would Let the team know what she is telling you. I don’t think the tube is a bad thing and hopefully they will keep it in and get some weight on her. You may wish to try to have her eat orally with the tube in place for a few days. Things like liquid supplements, soft foods and see how she does.
if they take the tube out and she does not eat, she needs to stay and tube may need to stay in until she eats.
My d felt safe in hospital too and one weekend on home leave we took her back early! Hard hard stuff!  
Is the team one that deals withED? 

You asked in on a previous post if you can change to another CAMHS I don’t think you can in the UK.
Please remember you are not a failure. She is very ill and needs good and intensive medical care.
I would suggest not getting into discussions about whether she can do it or not. It will frustrate you more, and there is not ‘winning ‘ her over to eat.
Soft murmurs of its ok etc... and no substance seemed to help my d. I had to be silent and not look at my d when she ate. 
It will come, this part for sure is not just hard it is gruelling.
please take time to rest up for when she gets home. Cook and freeze food to make it easier when she gets home.
Keep asking questions, we all wish to help.
XXX
Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Quote
Jojo2271
I don't want to swap cahms team.. On whole they are supportive  
We are on main acute children's ward at moment and cahms team alhave been here for few hours. 
We were told fbt, read Eva mushy book, and go home and fbt means you take charge. 
We were given basic meal plan but not seen a dietician to discuss tactics around calories so for first week I was left trying to work out what a snack is.. My d at best will eat one rich tea biscuit. 
I have very quickly realised that we need a squillion more calories in our meal plan. 
And had no offers of training, in home support or what to do if it fails. 
We were told we have to do this for 4 weeks and if it doesn't work they will do a tier 4 referral for IP place.
We can afford to pay sooner if we want to but currently I want to work with local team if we can. 
Luckily I am a doctor myself so found dealing with collapse and fits easy, was very calm through that bit!
I have told nurses we (d and I) want tube in for next 24hrs with oral refeeding alongside to show we can do it.
I am hanging onto hope but frankly so far I think we are heading for IP treatment... But been warned nearest units won't take her with ngt in... 
So looks like a lot rests on next 24hrs or so.
I am going to be mainlining coffee!!! 
Quote
Ellesmum
A couple more things I forgot to ask, you said you only just got a CAMHs referral, was this for an initial assessment and you’ll be seeing a team from now on? I’m imagining too that the CAMHs person you’ve seen on the ward is the duty CAMHs person? If so they may be able to speed up the ongoing treatment but if they are the duty person they may not have any or much experience in ED.

If that is the case then you’ll have to go by your instincts of whats best for your child, I’d still have a go at privately asking a doctor to tell your daughter she must eat. It helped us a little as mine has more respect for doctors than she ever did me.  

If sitting silently works best go with that, later distraction might help, like tv or a board game. Also, similar to when they’re tiny, what works this week may change next.  

The tube may may be best for now to get calories in and help you catch your breath.  
Ellesmum
Quote
tina72
Jojo2271 wrote:

I have very quickly realised that we need a squillion more calories in our meal plan. 
And had no offers of training, in home support or what to do if it fails.


You did great by realising that you will need a million more calories and you do not really need a dietitian for that (they often only learned how to make patients lose weight and are no great help). You "just" need to feed her as much as possible with highest calories possible. Start with small footprints that are very calorie dense. Add cream, oil and butter to everything (and you will be surprised about the possibilities!).
FBT is often with low training and low support, that is sad but part of the concept. The idea behind seems to be that if you found out what works you can do that alone and you can tackle all situations that might come. With that you often feel like re-inventing the wheel at the start and that is what this forum here is about: read what other parents did, chose what you like to try and find out what works best for you and your d.
You can do that. We all had problems to get started. My d was where yours is 2 years ago and now she is doing great and is off to University. Recovery is possible, do not give up.
Keep feeding. There is light at the end of the tunnel.
Quote
Ellesmum
Sorry I missed your last post,  like most parents here I had to get creative in bumping calories, at the start even a small tin of ‘diet’ soup got 300 calories of rapeseed oil in it, porridge got Complan and ground almonds, diet hot chocolate sachets got Complan, anything oven baked got drizzled in oil and so on.  

We develop ninja skills in time, but it does take time. Our meal plan went in the bin from the start really, it was still restrictive but by the time we’d seen CAMHs for it we were quite further along.  If your d will buy into the plan, perhaps a hospital doctor will tell your d it’s a must, from there you can bump those calories up. We can certainly help with this if you give an idea of what she currently eats and drinks. 

This time last last year I felt relieved if my daughter would eat a few carrots and a Diet Coke, if she ate a banana it was amazing. Now she happily eats take out pizzas and crisps and burgers so try to keep hope for better days.
Ellesmum
Quote
Jojo2271
Lovely to hear of hope... And hopeful stories. 
Tube staying in but no more dioralyte and no tpn. 
Going to try feeding and drinking with tube in this evening and assess tomorrow  
She wants tube to stay in as safety net.. But I am not sure if it is because she knows she can not drink and the tube won't let her get dehydrated 
Quote
tina72
The tube tells her that food will go in no matter what. It helps her to fight against the ED voice that forbids her to eat. She can tell that voice "it does not matter if I eat or not, the food will go in by tube anyway".
Keep feeding. There is light at the end of the tunnel.
Quote
Jojo2271
Tina72 thanks that makes sense. So update, hardly had more than 5mls yesterday and staff on ward were vile 
Today though lovely nurse, cahms nurse here too, and seen by our cahms team... Tpn to start this evening, dioralyte via ngt too, tier 4 referral being done.
Staying as in patient on our local paeds ward until Ed unit bed available. 
I am a doctor and pulling in some favours to find a bed asap. Pushy mother has emerged... Luckily the plan was exactly what cahms had decided as best option too. 
Ward staff all being told she is seriously ill as a few have been less than kind and feeling I get is they think I am not trying or fabricating it... Because her obs and bloods are all normal. This I think is because she was a very fit, strong athletic young person up until 4 months ago.. She was still playing County level hockey in December!
She has been told of plan, looked dazed but then had her dioralyte and clearly bsl came up and she sat up, chatted, laughed at my joke and asked for an ice lolly... Which she had 1/2 off.
I think she is probably very relieved it is all now safe... 
Quote
Ellesmum
How do you feel? You must be exhausted. I’m sorry to ward staff were so awful and I’m glad your a doctor and can pull favours.  This is the time to be the squeaky wheel, it’s such a horrible illness yet so misunderstood by so many HCPs.  

For now, her feeling safe is positive. Once a bed becomes available I hope it’s not too far from home, and it gives you a chance to regroup, rest a bit and get to grips with what you’ll need to do once she’s home.

Lots of the parents here have been through the inpatient experience so will be able to share their experience and support you.  Your child can and will recover x
Ellesmum
Quote
tina72
"Ward staff all being told she is seriously ill as a few have been less than kind"
Here in Germany some nurses told the sick ED kids they are occupying beds that are needed for the "really sick" children...

"I think she is probably very relieved it is all now safe..."
My d was. A big rock fell off her shoulders when she realised that it is not her fault or guilt any more when she eats something.

Do something nice for yourself now. I know this sounds strange and might probably the last thing you can think at the moment but ED recovery is a marathon and you will need a lot of power for a long run. Load up your batteries and sleep and trink a coffee with a friend and go to the hairdesser and the dentist as you might have no time for that for a very long time...she is safe now.
Keep feeding. There is light at the end of the tunnel.
Quote
scaredmom
I just want to pick up on the fact that her vitals and labs normal.
That is the scariest thing about ED. There is no real objective measure of severity. Low glucose, and arrhythmias are quite late and so serious, you don’t want them to get to that point before you do something. It is so hard to educate others on how ill they really are! 
Even kids with higher weight can be deathly ill. And in kids they compensate very well and then suddenly crash. 
And many of our kids are very athletic even while still quite ill and can have exercise compulsions. As for her hockey do up think she has been ill longer than you thought? That was the case for my d.

I am glad you are pushy. 
XXX
Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Quote

        

WTadmin