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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yellowcaty Show full post »
debra18
JoJo I hope you don't mind me saying so but your description of Eva's book made me laugh.
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sandie
My D was enraged everytime I used a phrase from Eva Musby's book as well. She said I sounded like a therapist and ridiculed me to psychologist..
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mtkmbc4
Personally I would like to see a totally new approach used, if only as a trial.  I genuinely believe that, if patients presenting with an eating disorder were told how desperately ill they are and that they had to go into hospital straight away, for something like a month, so that eating properly could be put into place with intensive support IMMEDIATELY - I believe that many patients would come through the illness more quickly.  This ridiculous waiting until weight drops is such an ineffective way of dealing with things - I wouldn't even give the patients a chance to go home and try to start eating under parental supervision, I would whip them in immediately.

Credit to melstevUK for this post which I completely agree with!!

Even at arguable the best partial program in the world, a child is not admitted until they become “sick enough.” It’s an insurance payment thing in the US, I’m pretty sure. My daughter was told time after time by another well respected eating disorders team that she didn’t need to be admitted because her vitals were ok, her labs were ok, etc. We sought care, as we had been instructed to do by our FBT team whenever our d missed too many meals, at the emergency room only to be sent home time after time, even though they recognized that my daughter had lost weight and was on an all out food strike. My daughter quickly got the message that we as parents were powerless to get her to eat and that we were the crazy ones who kept taking her back to the doctors who wouldn’t admit her because she wasn’t sick enough.  That approach only served to more deeply empower her disordered thinking.


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WorriedMum68
Dear Jojo2271

I haven’t posted here for quite a long time, but from what I have read from your recent posts your situation is very similar to mine, and I felt compelled to write.

My daughter is slowly losing weight again, and we are having to accept that inpatient care is necessary. Like for your daughter, FBT isn’t really working and we have had the same reaction when using tips from Eva Musby’s book, though I still think it’s excellent.

I am exhausted from months of effort, and gutted that that effort doesn’t seem to have made any difference, so like most people here understand just how you feel. It’s hard to see our lives change so suddenly and dramatically, and watch other people living their lives normally. Hopefully that will happen to our families, too, in time.

Wishing you and your daughter all the best

WorriedMum
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melstevUK
debra18,

"Also I think refeeding is contrary to modern parenting and that makes it difficult for people." 

Parents get that - but try laying down the law with a teenager who simply will not accept parental authority at an age when they are genetically wired to rebel and it simply does not translate into acceptance of eating.  It translates into something like plate-throwing or storming out.  Even with 'kind insistence' which is one of my favourite phrases, it does not always lead to compliance and weight gain.  

No, I don't think hospitalisation is required in every case but I do think when teenagers in particular present with an eating disorder in clinics initially - I don't know of any clinician who has said  " If you don't go home with your parents and face down the fears around eating from today onwards and comply with the meal plan they devise for you, then you may well end up in hospital or you may find you are fighting this illness for another ten years.  That is the reality of the illness that has taken a hold of you".
Wouldn't that be more effective than the gently-gently, nicey-nicey approach that so many of us have been on the receiving end of?

I am not saying that your d's journey has been any less difficult or traumatic, and neither has yours - but there are so many factors in every case which can make refeeding possible or not, and I am not convinced that parenting style is a factor.  Part of the problem is that many parents on here have never needed to be authoritarian or hugely firm around discipline because their children have hitherto been easy-going and quite malleable.  The shock of seeing the devil incarnate taking them over is devastating!  And having to find a totally new approach does not happen in a few days - and in those instances I really would like to see hospitalisation right at the start - to get the message through to the patients just how serious the illness is.  
Believe you can and you're halfway there.
Theodore Roosevelt.
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WorriedMum68
Thanks Jojo, and my best wishes to you too, Yellowcaty, sorry for high jacking your thread.

It will have to be a virtual g&t, unfortunately, thanks to alcohol clashing with the wonderful anti depressants I now take!

WM
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melstevUK
mtkmbc4,

I am glad you like this idea!  

I am looking at ways to see if I can get it piloted - I know a few psychiatrists and psychologists here in Scotland so I will be discussing it when I get the opportunity.  
Believe you can and you're halfway there.
Theodore Roosevelt.
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debra18
MelstevUK I think it's a good idea for the therapist to say that the child needs to eat everything or go into the hospital and a short timeline should be given like one week. Many things need to be changed, including more support for parents, higher target weights and not  to give back control quickly. I was naive in thinking at the beginning that it must work for everyone that reads Eva's book. I see it's not so simple. But I am grateful for the whole FBT movement including Laura, Eva, Dr Locke and this forum.
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Elibean1
Debra18, I agree with all that!  I work in mental health (not ED) and there is no one size fits all for anything or anyone - but that’s not to say treatments, books, therapists and forums full of experienced people don’t help. 

Without a stitched together medley of private therapists, camhs, us, books (mostly Eva and Janet Treasure), this and other forums...we’d be stuffed.  If it needed to include IP, it definitely would and that would just be another necessary stitch  in the fabric of recovery.  

Services here in the uk are swamped. They do their best, and for us it’s been reasonably good - but it could be so much better if all those points were uniformly adhered to: treat as life threatening, support the parents, don’t wait. And for goodness sake, set target weights higher.

Re books....I adapt others’ words and use their gist. Worth remembering that Eva’s daughter was 9 when she got sick...my D is 12, and even then...I have to adapt or she’d take the piss! 
Elibean
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kazi67
The wait list for public services are disgraceful in our country too We waited 3 months for an assessment then they said yep she has AN you now go on a wait list to see someone 😳 are you serious!!!

seriously in hindsight at that point I WISH I contacted the only ED private hospital here where we live
hindsight mmmmm

I agree with all that more needs to be done in the EARLY INTERVENTION  wth a professional team as to at least guide the parents instead of us having to bumble (is that a word) around in the middle of the night  finding info on internet or reading books under stress with having no sleep trying to make sense of what was/is going on with their child 
only to be made to feel like I was over reacting at the GP he didn’t even get up of his backside to check the scale at one appt and id say that’s when AN realised it was in the drivers seat 

so i 100 percent agree with taking your kid to be assessed immediately and referred to specialised services immediately and the professionals spelling it out to your kid how long this illness can effect their lives and what needs to happen ie: eat all the food your parent presents to you!!
especially if kid is on cusp of becoming an adult as they dont really want to listen to parents 
(in saying that I believe my d was actually fearful of what was happening but couldn’t articulate it and AN wouldn’t let her)
she wanted me to take her to a “professionals”
“i didn’t know what I was doing” in her eyes as  she thought I was just trying to make her fat

i was in fact doing what everyone on this site was telling me to FEED x 6times a day!

so possibly that works with a 9/10 - 11/13 year old? But 17 turning 18 it was extremely difficult and my d wanted help 

interestingly enough Eva’s kind compassion did work with her ❤️ as well as a dozen other books I have read 
Brave girl eating -Harriet Brown
Brontes Story - Bronte Collins 

I still have to talk to my now 20YO with kind compassion expression, even when I dont feel like it, if I’m tired or had a bad day at work (and this happens often as I’m tired a lot) she picks up on any frown or stressed look on my face and her inner critic thinks I’m mad with her 🙄

my advise to any newbies who may be reading get the professional help/guidance you need immediately especially if your kid is a YA, as now my d team don’t feel the need to communicate with me now she is 20 (when our d is fully dependent/supported by us) and I know some countries it’s younger

if you don’t think your GP has any idea on ED, find someone who does!
dont waste 6 months waiting  and the ED becoming more entrenched and effecting more areas of their lives when they become depressed (seeing friends get on with life and they are not) self harm and even talking of not wanting to live 🙁

unfortunately we have to fight for our kids lives as some just don’t take this illness as seriously as it should be 

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Pingu
Yellowcaty

We are all parents or carers just trying our best. I've stopped panicking and beating myself up. 
My d has lost a little weight but I can not make her well she has to do that for herself with my help. 
Honestly relaxing and having a much more relaxed attitude doesn't change the anorexia but it makes everyone's life a lot happier. 
Your doing great xxxx
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scaredmom

Such great comments here. I am inspired. 

melstevUK wrote:

Parents get that - but try laying down the law with a teenager who simply will not accept parental authority at an age when they are genetically wired to rebel and it simply does not translate into acceptance of eating.  It translates into something like plate-throwing or storming out.  Even with 'kind insistence' which is one of my favourite phrases, it does not always lead to compliance and weight gain.  
 


YUP! Even at 11 that happened here.

 
melstevUK wrote:

No, I don't think hospitalisation is required in every case but I do think when teenagers in particular present with an eating disorder in clinics initially - I don't know of any clinician who has said  " If you don't go home with your parents and face down the fears around eating from today onwards and comply with the meal plan they devise for you, then you may well end up in hospital or you may find you are fighting this illness for another ten years.  That is the reality of the illness that has taken a hold of you".
Wouldn't that be more effective than the gently-gently, nicey-nicey approach that so many of us have been on the receiving end of?


In support of this statement above: We actually have a great pediatrician who said exactly that. She said to d, "you will eat what your mother gives you. All of it and if no weight gain in a week you will be admitted." That happened exactly, she did not gain the weight and was admitted directly from the outpatient pediatric clinic to  IP and then transferred in one week to a tertiary care IP/ED specialist unit. I am so grateful. I know most countries do not have this. 
And yes, a direct approach would be the best for the kid and the parents. The parents (me) thought the team would make her eat and she would just eat with me too at home. Well we know how that story goes, don't we?
When IP I really feel that the ED teams should be educating parents/families and not just throwing the Lock and Le Granges book at them (that is what was literally done here- I was told to read it and if I had questions then I could ask). I had clue what I reading and how it pertained to my kid at diagnosis. 
When my d was in  IP they could have properly educated us, the family. My D was IP for 3.5 weeks there was ample time to be taught what was coming. There really was time that did not need to be wasted! ( I am so angry at that part). They could/should  show them the ATDT website and show them the information here. They could/should  search the internet with the families and show them all the videos we post here and other resources to help them prepare a bit prior to the child coming home. I think the translation of knowledge of ED from the team to the families, ie the real caregivers anyway, is the best way to improve care overall. 

The question I have always wondered about and it drives me mad is : If you, the specialist expect ME to do this at home at some point, why not make me a specialist too? I should have the knowledge and understanding about this illness so that I can be in the best position to take care of my child. Be blunt with me, tell the ugly bits, prepare me for battle, be my support system, give me tools to fight this, all the tools I will need. Give me contingency plans. Help me help my kid!

We cannot just let families fall from the cliff and hope the fly. If we give them wings, they will fly. And our kids will have a better fighting chance. 

OK rant over.😁

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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Elibean1
Excellent rant, Scaredmum! 

Education is crucial...and they should ALL put families in touch with ATDT
Elibean
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deenl
Elibean1 wrote:
Excellent rant, Scaredmum! 

Education is crucial...and they should ALL put families in touch with ATDT


Couldn't agree more.
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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Ellesmum
Absolutely agree scaredmom,  

I realise now I was pretty lucky really with the professionals I’ve encountered,  a kind but firm crisis team member at A&E who told d she could be detained under the MHA,  an A&E doctor who I had a quiet word with and she told d she had to have a bowl of oats in bed every night and it was a medical order and all our various general doctors who’ve all been kind but one in particular had worked on an ED ward and told d in no uncertain terms she really didn’t want to have to go there, so although it’s been the toughest year imaginable, I know some people have had it a great deal harder often due to their ‘experts’   

Even so I had to wait months to get even an assessment, by which time I’d learned so much and I actually said to our team ‘you expect me to get her well, so I expect you to XYZ’    
Ellesmum
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kazi67
It’s crazy that they didn’t “teach” you Scaredmom how to refeed you d whilst IP
Unfortunately everyone has a horror story to tell it seems
I had already  refed my d myself (thanks to finding ATDT and several books I read)and she gained the weight only to loose it all again after my super human effort  of getting the weight on - unsupported by “professionals” 

that I feel is where we came unstuck and it angers me, we had no guidance 
I felt like no one cared about my d or me and  no one took it seriously 

the professionals know what works 
ATDT has all the info links etc
obviously some of the big treatment centres in USA are doing the right thing I’ve listened to so many videos, podcasts etc from doctors, specialists recovered AN I’ve read as much literature on AN that I can, been to workshops careers meetings..........

why aren’t patients getting the care they need??
for the life of me I don’t understand why the specialists aren’t helping people properly wherever we happen to live 
I guess it comes down to $$$
fortunately for us we do have private cover but that isnt fair for those who don’t and even though we had it no one insisted we needed to take her to be assessed by specialised people 
so how ridiculous is that?
by the time I talked a GP into referring us my d was very entrenched in the ED
she though she would inhale calories from the exhaust fumes coming out of car😳

i believe especially if your kid is a YA to get immediate specialised help but no one said to us 
in fact  the message I got from this forum was to feed her myself and it’s why I always say GET YOUR KID ASSESSED AND GET THE HELP YOU KID NEEDS ASAP!!

i think in the past perhaps IP care wasn’t as good?? Idk?, I had one parent tell me dont take your kid to hospital she will pick up more habits so I thought I would as doing the best by keeping her home 

if I had energy (I’m still recovering myself from our d journey) id advocate
i do try to help people I’ve been in contact with to head them to this site for all the info

but I feel like I have enough on my plate trying to support my own d recovery and when I think things are going ok there’s step backwards and I’m tired
I spend my weekends resting so I can get up and go to work to pay the bills, support d, etc etc 
angry YES!! 
This was meant to be the time in my life to start to enjoy it
but we are mothers till the day we die I guess aren’t we

interesting enough recently my therapist gave me a booklet (that would of been handy being given this on diagnosis from the GP 2 years ago!)
but perhaps things are SLOWLY moving in the right direction 
any aussies out there its from NEDC
National Eating Disorders Collaboration
and says on back of booklet that it can be downloaded from 
http://www.nedc.com.au/young-people

tbh it wasn’t that helpful to me by the time I got this I knew most of what was in it and we were in the thick of it and my d was in her 2nd IP admission but possibly helpful to others

i do believe WE THE PARENTS are CRITICAL to our kids recovery 
simple as that 
and thank god for this site so we can all find strategies and info to help us help them 
sorry I know I never articulate/express myself properly but hang in there everyone!!

On a bright note: my worked her second week of work last week (part time) and no meltdowns yet 🙂
She hasn’t worked in the past 2 years as she has been so ill she went from graduating highschool to 2 years of hell so I want to try to give hope to anyone who thinks they can’t get better
HAVE HOPE!
x
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melstevUK
 "treat as life threatening, support the parents, don’t wait. And for goodness sake, set target weights higher."

Absolutely.  I can't find on this thread who said that now but yes, definitely!  

Ellesmum - you were lucky you had such an effective crisis team because not all patients are that lucky.  It is reassuring that there do seem to be improvements being made, if only slowly.  

Do you realise that medical students only get half a day on eating disorders in the whole of their training?  I think that is shocking.
Given that an eating disorders patient can turn up in General Practice, A and E, psychiatry, gastroenterology wards, it amazes me that so little is spent on teaching about them.  Surely they could spare even two days to look at them in more detail?  And ensure that the knowledge is up to date as well.  
Believe you can and you're halfway there.
Theodore Roosevelt.
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CED123
Dear yellowcaty. Thanks for your party. My D is not as unwell as yours but I really recognise the feeling of not feeling good enough. And it does impact on reaching for support because  in my case I feel that it must sounds as though I am just not listening to people.  And it may be also exacerbated by the fact mostly we are asking for help with problems and so we don't always share the small positives. I don't know if any of that makes sense.


Also we all have different feedback styles - i definitely need a cheer leader, and that's in all bits of life not just this. 
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CED123
Post not party. Damn phone autocorrect.
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tina72
We will have that party later, CED123, when your d and Yellowcathys d are through that tunnel. I am joining you!😂
Keep feeding. There is light at the end of the tunnel.
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debra18
Elibean 1 I am also a mental health professional and that's why I understood the ideas of behavioral therapy and exposure therapy in refeeding. I have always loved Skinner and I am the only one of my friends that loves toilet training my kids. Not to say that I am at all happy my daughter got an ED but there is some feeling of accomplishment with every fear food and behavior tackled. 

Melstev please don't give up on the fbt system. I think it helped a lot of people but yes a lot of changes need to be made.
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mid73
Just to say I totally agree Melstev about hospitalisation. We totally struggled to get sufficient calories with FBT at home and our then 14 yr old was placed inpatient relatively quickly by our very good CAMHS team. I know we were incredibly fortunate in the lottery that is AN treatment in the U.K. ( and it would seem everywhere) .

So IP didn’t cure her obviously but it set a start to recovery. I really don’t dwell on where we would be if we hadn’t had that massive helping hand.
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yellowcaty
Hi all

Although I was a bit nervous about starting this thread, I’m so glad I did. I now don’t feel as alone and know there are others out there who are or who have battled with long IP admissions/ years of struggling. I’ve always been in awe of those of you who manage it at home, but now don’t feel as guilty that we couldn’t. Thank you everyone for sharing your stories.

It has also fired me up to want to campaign for change in the services available for ED.  It is not something that I have the capacity to do at the moment, but hopefully something for the future.

We have been fairly lucky with the services in the UK but it is so clear that it is still such a postcode lottery. It also still depends on your GP and the type of referral made. We originally were referred for a general CAMHS assessment as the referral suggested that anxiety was the main issue. We would have had a two month wait for that appointment if it wasn’t for a junior doctor in A&E one night. We went one night when all she had eaten was a spoonful of potato and beans. The doctor couldn’t believe that she could not get anyone to admit her and believe me she tried everything. The only way they would have kept her in is if my D had said she was suicidal. As we left that night the doctor promised that she would do everything she could to get her help. Within two days we had an emergency appointment with CAMHS ED services.

When we attended that appointment she was eating nothing and could barely walk. They considered admitting her to IP there and then but decided to leave it a couple of days to see if she would eat. After the scare of hospital she did pick up slightly but was fed on Forticip for months. I can only wonder whether we would be in a difference place now if they had admitted her there and then.
I also agree that if they had told me there and then how serious it was and that it would get worse, I wouldn’t have spent so long thinking that we could give it another week. I would have taken her to the IP unit myself that night. 

Where ever we live everyone of our children deserves the best possible care available. Xx
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Ellesmum
I’m glad you made the thread too yellowcaty and that you feel less alone, I think it’s really important that all experiences are heard. Like you I feel strongly that change has to come in the treatment of ED and I hope to be a part of helping to make those changes.  Right now I’m still in the thick of everything but it won’t be something I can simply put behind me that’s for sure x
Ellesmum
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sandie
I feel the same about need for change. I am amazed at the lack of feedback requested from parents/carers. There are quite obvious improvements needed locally especially around information and education for parents and meal-plan support. Some of the changes would not cost anything. I would like to help change for other parents and their kids.
My D has not been inpatient but i think she would have made more progress if she had been admitted for 2 weeks on diagnosis- with the intensive parental education advocated by scaredmom. Her BMI was 13 and no-one suggested she stay off school until she nearly collapsed 6 weeks later. We floundered along clumsily and scared with basically no idea of how to feed her and just a print out from Maudsley book given to me advising me not to be a jellyfish ( while i sobbed and quivered like a jellyfish for months and just felt guilty about it). Maybe we need a separate thread about how to change the system with each of us seeing whether there is anything we can do as individuals.
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