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

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scaredmom

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Reply with quote  #1 

Hi,
I have been thinking of the beginning of our forcible entry into ED world. As I go back and think about the "family meal", I wonder how to make that "better" for the family.

Our T had us come to the clinic with a meal in the first few weeks after hospitalization. I found it a very awkward situation  as it is not done in the home (here at least). I think my D was well behaved for that meal so the T could not see the "other stuff" we were struggling with.

I think the family and  child are better served to have the family meal in the home. I think I have seen that some here have the service.

Also is there only ONE family meal? I feel that there should a few: one at the beginning of FBT and then a few weeks or months after that to see progression.
I do know there is a variation in support all over the world but thinking if I hear from you what works best I can try to get that implemented in some way here. ( I am becoming more of an advocate now- Yes that is a positive[smile])

Also, not sure if all the above really matters in the end?
Just thinking out loud as I was disappointed in some the "protocols" they had. They seemed very artificial and my "team" kept say "parents know best". They did NOT tell me to add calories but when I said that here on ATDT it was strongly suggested to add oils etc to food, that "although we do not prescribe that, we do recommend that"???

I also told them that belonging to FEAST should mandatory, they said "we can't make it mandatory". Yes I understand that, but they should push it.
I am now involved in changing protocols at our hospitals and will be working with our CAMH too to change a lot of things.
Sorry just need to vent. Now that I look at our year, I know better what I would have liked to know at the beginning and wish that the team did what our FEAST team did!!

XXX


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Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
debra18

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Reply with quote  #2 
I implemented many rules during meal time that might be helpful for others. 1. Nobody could make comments about my daughter or what she was eating. 2. No fighting or crying at the table. If the other kids were crying they had to leave and go to another room. 3. All of my kids had to eat whatever was served without complaining. It helped my daughter know that I wouldn't take complaints from anyone and it wasn't just her that didn't have choices. If my kids followed these rules than once a week the other kids could chose a "special supper" like sushi or pizza.
tina72

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Reply with quote  #3 
Hi scaredmom,
we did not have this introducing "family meal" because we started FBT at a point where we were closer to phase 2 than to phase 1 in the eyes of our therapist (looking back I would say this was not the case).
If I could turn back time and think about what I would wish how this family meal should be (and I think this was your question), then I would like to add my two cents:

1. Like you I would like to have it at home. If that is not possible because of distance I would prefer the therapist is on skype watching our meal at home.
2. I would wish to have a talk what to change without my d afterwards. In fact I would dream I could have had a headset and the therapist could tell me the "right" words to say secretly [wink]
3. I would suggest that its better to have 2 or 3 family meals with some time distance watched by the therapist because we need some encouraging what we are doing right and what not.
4. I would wish to have more help with amounts and increasing calories. It is a bit like re-inventing the wheel when they tell all families "you have to find out yourself what works and what not". Here on ATDT I learned a lot in short time and we should use this experience. There are things that work in nearly all families.
5. I would wish to have a list like that toothfairy posted what to do and what not in short senteces. Get her out of the kitchen. Let her not see what you add. Take away sharp things and door keys. Something like that. We are so overwhelmed with all the information at the beginning that we would need a short 10 points plan to start.
6. EVERY FAMILY should get Eva Musbys book and the link to this forum here. Both saved our life.
7. Ideally there should be a 24/7 phone call opportunity for a CAHMS expert or some ATDT help. Sometimes you are too desperate to post something and a human voice can fix a lot.

You are doing great work and I am very impressed that you now find the power to be an advocate for us all. Desperatly needed.
Tina72

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d off to University now 22 months after diagnose, still doing FBT and relapse prevention 
debra18

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Reply with quote  #4 
Excellent suggestions Tina. Has anyone worked on compiling a cookbook?
tina72

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Reply with quote  #5 
I heard that FEAST will collect recipes soon to have a cookbook available.
Until then you can use the "search" function with the word "recipe" and you will find a lot here.
If you need a special idea, feel free to ask.
Tina72

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scaredmom

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Reply with quote  #6 
Thanks Tina,
I feel your suggestions are in line with what I am thinking. [smile][biggrin]

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Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Kali

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Reply with quote  #7 
Hi debra18,

Here is a link to the FEAST family cookbook. It is from 2009 and there has been some talk of updating it at some point in the future. 

https://issuu.com/bookemon/docs/bookemon_feast_family_recipies_3203

Hope it can be of help!

Kali

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HopeNZ

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Reply with quote  #8 
Hi Scaredmom

Our FBT therapist initially proposed doing the family meal in the hospital just before my d was discharged.  This just didn't make sense to me (partly because I stayed with my d in hospital so I would have had to come home to cook a meal to take to hospital!) so she agreed to come to our home to observe a meal a day or two after discharge.  Although it felt contrived, and we had an atypically drama-free meal, it did help to give us some confidence in the approach we were trying to develop at that stage.  I was also pleased further down the line that the therapist had been to our home.  It helped with some of the problem-solving of tricky situations that she could recall the layout of kitchen/dining room/exits etc.

One thing I would definitely do differently, however, would be to not include my d's younger brother in those ghastly early mealtimes.  Our therapist felt it would be useful to have him there to help with distraction etc (we played a lot of board and card games at mealtimes) but overall the cost to him and their relationship was too great.  He was not included in the 'family meal' scenario and I feel with hindsight we should have kept it that way.

Interesting thread, thank you!



scaredmom

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Reply with quote  #9 

 hopenz,

Quote:
 it did help to give us some confidence in the approach we were trying to develop at that stage.

I like that. I do think that is the intention of the "exercise".  I agree not having your other child present could have been traumatic. 

Did you have another observed meal? 
I think reviewing over time could be helpful? 

Thank you ,this is very helpful.
 

XXX


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Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
OneToughMomma

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Reply with quote  #10 
The Tough family did not find the family meal in the psychologist's office helpful.  I understand that it is part of FBT protocol, and it might be helpful for other families.  

I reckon a support person (if not the actual FBT) coming into the home to help on occasion would have been amazingly useful.

OTM

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D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
scaredmom

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Reply with quote  #11 
OTM, 
This is a great idea! Thanks!
Quote:
I reckon a support person (if not the actual FBT) coming into the home to help on occasion would have been amazingly useful.

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Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Mamaroo

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Reply with quote  #12 
Wow, we never got a family meal.....maybe that it why we weren't successful at refeeding with food at home (she had ensures for months). What was helpful was eating with our care coordinator (during our out patient meetings), that kick started her return to eating food again. What I would have loved, was someone like one of the experienced poster on this forum, sitting with us at dinner time, telling me what to do, what to say, instead of learning it all from scratch.

To all of you here helping us  a BIG THANK YOU.

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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
doris

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Reply with quote  #13 
Scaredmom, well done you for having the energy to take this on, thank you.

The family meal really didn't work for us at all. I would probably go as far as saying it was the single most damaging thing that has happened during the course of treatment to date. It took place about 6 weeks ish into treatment at Breakfast time..I had to take the food, all D was eating at breakfast to this point was porridge and a banana, but she would eat a decent sized portion of it, made with whole milk, in a relatively timely manner, yes sometimes there was screaming and crying and sometimes food went flying across the room but on the whole she would eventually eat. So all four of us arrived at the clinic and before the meal D was weighed.. to this point her weight was kind of up and down each week but this week she had put on 1lb. So she'd just been told she's put on weight now she was expected to eat in front of 2 therapists, one of whom is taking loads of notes. It took well over an hour for us to persuade D to eat just a very small portion of the porridge (that the day before she had managed at home ok). We were given advice about what to say and how to persuade her to eat but we were also told after this time that we should limit meal times and if she hasn't managed to eat within the set time then take the food away...OMG ED LOVED this. From then on ED would just sit the time out every meal and snack, eating just the tiniest bites until time was up..this continued for 2 months until D was finally admitted to hospital. 

I can see how in theory the opportunity for a therapist to advise during a mealtime could be invaluable, changes I would make to our experience would be:
1) have the meal at home
2) only one therapist in the room (or even better I LOVE Tina's ear piece idea)
3) don't weigh the poor child immediately before the meal

There was a funny side to our experience that we all laugh about now; my son (nearly 18 at the time, 6ft 5" rugby player) doesn't really like porridge so I brought a box of 24 weetabix for him. Whilst we were all desperately trying to persuade D to eat he sat quietly and worked his way through most of the box!!!

Mamaroo, the idea of the care co-ordinator eating with you could maybe also help in the family meal..surely the experience would be more "normal" if the therapist ate with the family too???


scaredmom

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Reply with quote  #14 
Just a question to the group,
what would you think about role playing?
I mean having parents meet with FBT therapist alone and enact a typical scenario at home and T can coach the parents on how to handle the situation. Rather than have the child present ie an artificial situation the parents can learn and model after the therapist?
Thanks for the input

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Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
debra18

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Reply with quote  #15 
Role playing seems like a good idea. I also thought about audio recording the meals and going over them with the therapist.
tina72

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Reply with quote  #16 
I think role play without d would be a great idea. You can put in all worst case scenarious that happened in the last week and tackle them one after one.
Tina72

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debra18

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Reply with quote  #17 
We had in social work school something called "process recordings." We wrote down the conversation we had with a client right after the session, including what they said and our responses. After we reviewed it with our supervisor. Also might be helpful.
debra18

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Reply with quote  #18 
I think different options should be offered. Not all parents might be comfortable with role play. The important thing is that different things work for different parents.
scaredmom

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Reply with quote  #19 

Thanks Debra18,

I agree that different options should be available. The reason I have asked this question to the group stems from my "discomfort" shall we say,  that we had no clue as to what they were doing at all. We were overcome and really no info was given as to "what, why, how and when or even where".  So I am tackling one piece at a time.  The Lock and Le Grange (sorry not sure if that is correct) was literally thrown at me and I was told "read it."

I think bringing these ideas forward to our ED clinic may help them see that there is no one way and that through the experiences of others here who have "been there, done that", maybe they can open their minds a bit and think outside the box- Sorry unless you have been where we are/were, how can they be the "professionals" - they don't live it like we do. I feel they just do the same with everyone and it may not be the best for everyone.  My other goal is for them to have a proper conversation with the families as to exactly what they are doing/aiding and how they will be doing that. We were just thrown in and did not know that I had to "do the therapy".  I did not know who did what or why. It was frightening to say the least. 
I think our experience compared to some I have seen here , was not too bad and having said that as we say here"feedback not failure" they could reflect on their practices and grow. 

It was always after the fact that they gave me support. I did not know that violence may occur. my D was not at all violent pre diagnosis, or in the hospital, but on the first day at home all h--- broke loose! I was not prepared for that and while we were in Hospital they should have prepared us for most if not all issues.
They should show all the great videos here ,to the family, at the time of diagnosis, so that we could start to understand what we were in for.
So that will be in my suggestions: show the videos and talk about them ie educate the families fully while we tackle the ED, don't do it after the fact it may make things harder..[frown] 

Anyway ranting a bit now.
Thanks for the great ideas and perspectives so far. Looking for more..[smile]
XXX


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Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Foodsupport_AUS

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Reply with quote  #20 
Quote:
Originally Posted by debra18
I also thought about audio recording the meals and going over them with the therapist.

This is such a fantastic idea, or even better taking a video of a meal at home. 

It is so much more real life and as you say this could be reviewed in the session, discuss what happened, how could things have been managed differently. 

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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.
seaglass

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Reply with quote  #21 
I feel quite strongly about this part of FBT. The meal for us was humiliating, excruciating and not ONE single word of feedback was ever given so was a painful yet pointless exercise. It felt like something the therapists had to do (as it was written in their manual) but had no idea why they were doing it.

The whole premise was false. Before the meal they made my d cry by talking about her weight and failure to gain and then asked us all to eat. I stopped them and pointed out that ANY person would struggle to relax and eat a meal if they were sobbing so much that their shoulders were shaking. It felt cruel. We all went through with their stupid meal with no drama. It was misrepresentative of any other meal at this point. The therapists sat staring in silence with clipboards. When we’d eaten our food they said NOTHING.

I honestly feel this is one part of FBT that should be considered and either not done or tailored to individual situations (so a home visit, a session with parents role playing it just talking about meals and discussing how best to go forward).

Honestly I think it caused lasting damage
Foodsupport_AUS

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Reply with quote  #22 
Seaglass I can see why you found the session so distressing. 

This document comes from Westmead Australia(freely available). This is a highly respected centre of excellence here.  It is a step by step guide to what therapists are meant to be doing in FBT - part of their training and assessment manual. 
In session two it describes the things that the therapist is meant to be doing during the family meal. Note there is meant to be feedback, discussion prompting and assistance for parents. 

Clearly there are lots of other options out there that may be even more beneficial - as others have said at home observation, a video or recording could work too - then it being discussed in the session. 

 
Attached Files
doc FBT training.doc (171.50 KB, 22 views)


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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.

scaredmom

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Reply with quote  #23 

seaglass,

Quote:
I honestly feel this is one part of FBT that should be considered and either not done or tailored to individual situations (so a home visit, a session with parents role playing it just talking about meals and discussing how best to go forward). 


I agree!

XXX


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Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
hope21

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Reply with quote  #24 
I have two experiences of the FBT meal and neither I would I would wish to repeat. The first was a family lunch that we brought into the hospital, we provided the food and we all had to eat in front on two CPN’s that we knew but didn’t know that well. It was stressful for us all! My husband doesn’t eat sarnies or rolls only eats hot food but we were not allowed to bring anything to heat up and he HAD to eat. I also found it stressful eating especially since they didn’t eat! My daughter was beside herself but she did eat. I knew she wasn’t eating enough but didn’t know how to push those boundaries without a full scale war. This was early on in diagnosis and she was loosing weight at each weigh in. All were were told was try and get her to eat more, we knew best we were her parents. I remember asking how?’ We also had a meeting with the dietician who to this day I still laugh at it was just me and my husband. We were each given a paper plate and had to write on it what we thought was a good meal! We were then given plastic food and asked to show what a portion looked like. Later on when D was coming out of IP I was given real food to plate which was useful. The dietician always said under NO circumstances should we EVER add to D’s food. Her meal plans was 2,500 calories. They said we would loose trust if she found out! I get that but I also came to this site and read and added butter, cream and oil to it all!

Our second experience was the week before D became an IP. She was struggling to eat all. Or she’d eat just enough to keep going, the community CPN came out and observed D and I eat lunch. It was hell... she ate even less than she had done before. And that was the beginning of the end as such she locked her lips and didn’t open them again. Eveyone tried. She became an IP and was NG fed. But only for a short period of time. However the community CPN said it was the worse case she had ever seen (not helpful). And they also all said they believed she had to hit the bottom before she could climb back up. The bottom being we were told she was going to die if they couldn’t get the NG tube in and feed with in a day or two as everything was slowing down and she had had probs with heart for months. At 12 years old she was sectioned for this to happen.

I still feel it’s awful to let her get that sick before NG tube as that is what saved her. . I was happy for it to go in straight away but they waited a further 2 days, they wanted to try and get her to eat. But she didn’t.

I don’t feel anyone was honest with us. But I have to ask the question woudl I have heard what they said? I hadn’t slept in months was beside self with worry. So wasn’t thinking straight. It if someone had said the hard facts about recovery time and chances I might just have flipped.
But to my knowledge and understanding this is the only illness this happens. Your not given a full picture.

As D has improved I have asked the questions about recovery and how long it can take and what’s next etc. But feel
We have been rushed through. If it were not for this sit we wouldn’t be where we are today! The hospital would have had us on phase 2 a year ago! But I resisted from what I had read and we have been two steps forward and back and then back on an even road.

I think lots of improvement needs to made to the service and we were not told about this site from health care it was a friend.

My D was young (as are and many) she had just turned 12 so a lot of things were not in our reach because of age. I called loads of places for help. And my only option was CAMHs. We are based in Scotland.
teecee

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Reply with quote  #25 
“>6. EVERY FAMILY should get Eva Musbys book and the link to this forum here. Both saved our life.”

Absolutely agree! I genuinely had the book in hand reading verbatim the dinnertime scenario responses from the book to my D during refeeding....saved my life and encouraged her to keep on track with eating. This forum has kept me sane!! :)
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