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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freya
I hate this whole concept of FBT being "hospital in the home/food is medicine". I know it is, I know.

The pressure this puts on me though is unbearable. Will this meal be ok, what if I sneak in this ingredient will anyone notice, can I deal with another refusal, what should I cook. Times 6, every day.

Can you imagine a dr telling you that you need to give your child with cancer all their medicine and chemo and radiation at home, with no supervision. With one appointment a week to check on you.

I feel like FBT is saying to parents: here you fix your child, off you go. And we are left to medically administer and pyschologically maintain these very sick young people. How is this okay?
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LaraB

Hi you remind me of something I read which Laura Collins wrote the other day - all about how much she hates FBT for pretty much the same reasons you point out. But she is a big advocate for same because of the evidence of effectiveness. It is incredibly tough. The pressure is terrible and definitely can feel unbearable. And does not work for everyone for lots of different reasons. 

on a personal level, I needed to go on sertraline to help me with the stress I was feeling and it definitely helped, as did pouring my story out to a trusted friend. 

And I think no service could give me the amount of support I needed as a parent to get me through, and that is why peer forums like FEAST are so necessary. I am sure there must be other models where parents are given more support like in Australia they have a consultant carer model and obviously there needs to be lots more education and proper FBT support for parents. It is why we need advocacy. We badly parents like you and me and everyone using this forum to do their bit when they are able- when life circumstances allow, to advocate for better support and services. I am not really able to do much about that now as life is pretty intensive but I try to spread the word about FEAST on social media.

sending you a hug. Hope today goes ok. Xxx
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PleaseEAT

Hello freya
im sorry it’s so hard for you atm
in the beginning we served 3 “normal” meals and 3 “normal” snax to our d 
it usually took me an hour to get every meal and snack into our d and then I would stay with her for an hour after every meal and snack 
(to ensure she kept it down)
it didn’t leave much time for anything else that’s for sure 
was this fair? Was this ok??
IMO NO  it wasn’t, but I did get the weight on her
but unlike you we had NO  FBT specialist to keep check on us weekly 
was this ok or fair? Again no it wasn’t/isn’t 
BUT at the time I had no choice I didn’t understand what was happening and the local GP had no clue and AN was slowly taking my d hostage and taking over her mind 
it’s so frustrating and frightening and overwhelming and all on the forum understand 
come here to ask questions, vent and seek support 
Unfortunately recovery takes time a lot of time 
longer for some
its important to take care of yourself so you can help your d get well 

I believe the “fix them yourself thing” comes down to funding 
cancer gets a lot more than ED
ill try to attach something I found and you’ll see that each ED patient gets around $1 compared to $67 for schizophrenia 

the thing is if we (parents/carers) dont “fix/refeed” our kids who will?
and as it’s such a time consuming job ie: for us 6 meals actually took 12 hours unless they are medically unstable the costs to hospitalise and care for each kid......... do the maths 
and if they do end up needing hospitalisation then once home again you have to then keep up the feeding as they don’t come home cured 
its complex and complicated
sone kids recover simply with refeeding and keeping weight on, I do hope this is the case for your family but it can be more complex and complicated for some 

keep feeding and keep up the FBT appts would be my advise to you 
as we had no professional support my d AN got very sneaky and she ended up very ill and hospitalised and it’s been a very LONG and painful journey 
I think I’ve got off track but hopefully something might help? 
all the best 

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PleaseEAT
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freya
Thank you. So much.

It's the only way. I know, I understand, I do it, I'll keep doing it. The toll it takes is something that I don't see talked about. 

I'll never stop doing it, but I think there needs to be some acknowledgement that it is critically hard for parents.
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Foodsupport_AUS
freya wrote:
I hate this whole concept of FBT being "hospital in the home/food is medicine". I know it is, I know.

The pressure this puts on me though is unbearable. Will this meal be ok, what if I sneak in this ingredient will anyone notice, can I deal with another refusal, what should I cook. Times 6, every day.

Can you imagine a dr telling you that you need to give your child with cancer all their medicine and chemo and radiation at home, with no supervision. With one appointment a week to check on you.

I feel like FBT is saying to parents: here you fix your child, off you go. And we are left to medically administer and pyschologically maintain these very sick young people. How is this okay?


I get it, I really do. I think many of us find the need to use other support to help us get through it. 
The first and foremost part of FBT is the re-feeding. Theoretically we know how to feed our children. We know the medicine even if we are unsure of the dose. I followed a meal plan which was reviewed regularly with an ED dietitian. I found that this took a lot of the stress out of deciding how much to feed. There was a selection of meals and snacks that I used and used regularly. To be honest D wasn't too keen on variety early on either, but I knew she just had to eat these meals. As time went on they were added to, but then I new how much they were added to. 
I also found my own supports separate to D which were very helpful, as well as coming on here. 

A number of professionals have talked about how tough FBT is on parents, there has been research about it too. This article is one research article focusing on the effects of FBT on families. https://jeatdisord.biomedcentral.com/articles/10.1186/s40337-019-0235-5
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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PleaseEAT

freya
its DEFINATELY hard for parents!!!
everyone on this forum 100 percent agrees with that 
this illness not only effects our kids, and it very nearly took my d life 
it also effects us parents/carers, it brought me to my knees on more than one occasion 
I’ve lost count the times I’ve completely broken down at the GP’s or in my bedroom or in the car away from my d and the house
I remember one night sitting in the car alone down at the beach sobbing  for hours, just completely over it, the cooking, shopping, worrying, I became very anxious and stressed 

then as I was so stressed it started to effect me physically 
my emotional and physical health suffered not to mention my marriage, my social life, and financial burden of appointments (as well as I took so much time off work I had no leave left so no pay)
But I tried to stay positive, or it can become very depressing 
your in a crazy world that your family and friends just can’t understand 
One day at a time, one meal at a time, one foot in front of the other then there comes a time when things slowly start getting better, you notice little things, your kid might smile/ laugh or sing or you just notice little glimpses of your “real” kid
this illness shows us we are stronger than we know 
it’s also important to get help if you don’t think your coping, I did see a councillor who understood ED’s for a while which was helpful to me 
the forum is always a good place for support/info/ideas too 
take care 

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Scaredmom2019
I hear you. When refeeding I felt like every meal, every bit, was life or death. The pressure was unbearable at times and still is. I so feel you. 
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Torie
I'm not sure what to add here.  It sucks.  So much.  For so long.  ED is the worst.

Keep swimming. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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teecee
Freya I completely agree with you. This vile disease has many casualties aside from the sufferers themselves. I like others had to seek support from my GP and take sertraline due to the intensity of caring for my D. It’s not right but I don’t see the situation changing until mental health is rightly seen on a par with other life threatening illnesses in terms of funding and research. I don’t see it changing in my lifetime sadly, such is the ingrained thinking around ED in society and the hold the diet industry has on society.
Only the other day a ‘friend’ deleted my comment which was politely correcting a lazy comment about not worrying about getting an ED from ‘intermittent fasting’ If you’ve never had food issues before (🤷🏼‍♀️). Bio hacking seems to be the ‘in thing’ now. Professionals I work with now think it’s normal to do this?!!!!!
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Garsmom
I agree...I’ve never been so scared at the thought she might not get better...it’s was almost 24/7 In the beginning and still always a worry. Marathon not a sprint...
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Enn
@freya,
I have attempted to write a reply to you about 4 times today. I really did not know what to say but I really wanted to reply. I really get it. I was so angry that medical treatment was left to me, a nonspecialist in ED. I really wish that I understood ED at the beginning and that they had a proper real education program for parents prior to meeting with the child to explain exactly what this was going to be about and how it was going to affect ME. Yeah I am selfish about that. I wish I knew how it would affect me. 
Looking back I saw so many opportunities for them to teach me what to do BEFORE it happened. Maybe I would have been more confident when these issues popped up? I don't know. But I hated it when I would tell them about something then they would smile and say "Oh yes that is ED!" Shoot if I knew before, well.....maybe, maybe it could have been less traumatic. They should have given me tools prior to the violence, throwing of food, hiding exercise etc.. I did not know that some of the ED behaviours my d exhibited were ED. I was so ED naive! If they had told me up front that I would be the main doctor, nurse, therapist chef, for my kid, and that they would help me a long the way, I would have felt so much better. I have mentioned to my team the FBT is really "flying by the" seat of your pants. 
I could not read books that were recommended, I needed someone to tell me how to do it and what to expect. 
Well, I just wanted to reach out and tell you you are not alone. You are on the forum and that is where I learned. It is here I found my ED mojo and my team. My real team. 
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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teecee
Here here Enn. Totally with you. It’s so wrong on every level that they do that to us. So many have that same experience... what to do?
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MKR

Garsmom wrote:
I agree...I’ve never been so scared at the thought she might not get better...it’s was almost 24/7 In the beginning and still always a worry. Marathon not a sprint...


Hi @freya,

Your post absolutely triggered PTSD with me... 

Some of us had to deal with visits from the police, too - due to the screaming upsetting the neighbour

My main motivation was not slipping back to low weight and all the gore that came with it. 

I was SO fortunate to have a knowledgable and supportive work supervisor. Though she probably couldn't imagine all the horrors that went on at home.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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PurpleRain
And then, when I was starting to feel a liiiittle bit better, less scared, less exhausted, bit more confident, COVID19 arrived! And made everything, specially ED and self care much more complicated. I really really really need a fricking break.
13 yo d started to eat "healthy" September 2018, she had a growth spurt a bit later, followed by tummy bug. She started restricting breakfast and school lunch in January 2019 (that we know). We succesfully refed at home.
I have found inner strenght, patience and compassion that I did not know I had.
Never retreat, never surrender
keep feeding
 
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LaraB
I know!!!!! Who would have believed it! I was getting really really exhausted recently. I work also. I found taking a holiday from work helped. When I cannot face cooking, I buy prepared meals and can always add more cheese if needed. Is there anything you think you can do to ease the pressure? 
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MKR
freya wrote:
I'll never stop doing it, but I think there needs to be some acknowledgement that it is critically hard for parents.


I believe at the minimum the ED diagnosis should be treated similarly to a natural disaster and the parents should receive support from the insurers/ social services/ employment law. 

The parents often have to take time off work - or burn the candle at both ends to keep up with the financial pressure. A paid leave, meals delivered, childcare for siblings would also be welcome benefits for the 24/7 carer.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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PurpleRain
LaraB@  we had pizza today. last week my younger s (nonED) stayed with my mom (who had been staying with us but needed to go back to her place and ask him if he wanted to stay for a couple of days). It felt almost like a holiday!  I did enjoy having a little tiny bit more time for me. I have a bad back ache since yesterday though so I'm taking it really easy today (hence the pizza), so,yes, I try to find ways but lock down is hard in that respect (me time). Between homeschooling the youngest and feeding the oldest, there's no time left (I work but very very flexible hours, so that is not the worst).
13 yo d started to eat "healthy" September 2018, she had a growth spurt a bit later, followed by tummy bug. She started restricting breakfast and school lunch in January 2019 (that we know). We succesfully refed at home.
I have found inner strenght, patience and compassion that I did not know I had.
Never retreat, never surrender
keep feeding
 
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LaraB
@PurpleRain glad you managed to squeeze in a tiny precious time for yourself, and a nice break for your son too. Sorry about your backache. I hope it eases up. You need your energy for home-schooling and feeding!! Hopefully life will get a little easier when schools restart. Xx
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pheim
@freya@freya I feel you so much as this is exactly what's been running like a loop through my head, too. My D15 is relapsing hard and what sucks is that she eats whatever I serve (nothing more) but is at risk to purge if given the opportunity. I question whether FBT is a workable model for AN/purging type unless one is able to stay home full-time with their child. If I gave up my job we'd be broke and out of options, so it's back to residential for her in a week. I know she won't come home cured and that I'll have to dismantle our house and monitor constantly when she is discharged...I'm dreading it all and anxious but will do what needs to be done to try and keep her safe from ED. Purging just throws a whole 'nother gut punch to the blow of ED residing within the kids we love.
"What's comin' will come and we'll meet it when it does."
-Hagrid
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