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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kgm
Hiya from NZ 
We are just starting with a clinician on the FBT road. After a two month hospital stay where she regained 10kg, our 15 year old daughter was discharged home on the day lockdown was announced thanks to Covid19. Since then, March, we have received no support except weekly weight and observations done at the hospital eating disorder clinic. They have been too busy to start therapy with us so we have gone to another city that provides private FBT and have been here for a week as a whole family. 

Our daughter not only refuses to eat but she claims she cannot eat outside of her room or with anyone around. We have been told that that is the ED trying to isolate her. But man it is so so hard to not give in. We have had one trip to the emergency room to have her observations done but she is currently stable. We will be heading home this weekend and likely another hospital admission as she is bound to be unstable by then.  She is begging for fortisip but only if she can have it in her room. As she has already regained weight, we are being advised to replace fortisip with what we as a family eat. She is also currently taking seraton and is having a medication review tomorrow to look at something to target her anxiety more. 

Our clinician is encouraging us to stand strong, that she’ll come round and start coming to the table but I feel totally hopeless and we’re only a week in!

If anyone out there has advice or stories to share of their first week of FBT I’d really appreciate it. 

K
15.5 year old daughter diagnosed anorexic January 2020. Currently doing FBT after a 2 month hospital admission. Very very slow going.  
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PleaseEAT
Hello kgm
im sorry things are so difficult for you and your d  atm
i can’t imagine how hard this must of been whilst also having the covid crisis to worry about 
We didn’t have FBT, but I refed my d 3 x normal meals and 3 x normal snacks a day
some count calories but we never did
i would then sit with d for an hour after each meal and snack 😳 to make sure it stayed in
if your d won’t won’t come to the table take the meal to her
have you read around the forum? there is lots of good information on how to get your child to eat
its so so hard but please know recovery IS possible that’s not to say it’s easy at all
It’s really important to take care of yourself too so that you can stay strong to help your d get well 
im sure others will come along soon and give more ideas 
all the best 
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Foodsupport_AUS
The chaos caused by COVID just adds to your distress. I am trying to work through your story as you posted earlier that not eating with you was an issue whilst your D was in hospital. Working out the timeline - she was discharged from hospital around 2 months ago. Over that time she has continued not eating with you and been "eating in her room?" You have now gone somewhere else to try FBT with someone who is willing to do it in person? Just trying to work out if I have the story right. 

If that is the story, then it does sound like ED is using eating in her room and alone as some form of excuse. 
One of the greatest ED tricks that parents fall for is the idea that eating something is better than eating nothing. Many a parent, myself included has consoled themselves that it is OK long term to settle for less because it is better than nothing. There is an element of truth to that, but the thing is whilst they eat less and less they are getting sicker and sicker. The only way to recovery is to eat the full meals, every day. This means that every day with out full meals is one day of longer illness. 

What happens when you insist that she eat with you? If she eats nothing then going to emergency for assessment is appropriate. If she is going to her room to eat, and not eating her full meals, really it is just prolonging her illness, so it makes sense to wait it out and insist. 
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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MKR
Hi @kgm,

Welcome to the forum. Sorry that ED has come into your family's life.

We have had to change our parenting while refeeding our child, but it has saved her from the clutches of this dreadful illness. It was like swimming upstream.

We started off with, "From tomorrow, this is how we eat". This included supervised lunches at school (eating in the car) and getting the school on board as additional support.

The book by Eva Musby Anorexia and Other Eating Disorders was my lifesaver, as it offered so many different strategies. You can also download it onto your phone.

Feel free to ask more questions as you go along.

All the best,
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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Torie
To me, the most important thing - by far - is that the necessary number of calories go in.  Where this happens doesn't much matter in my book, and what exactly the calories are doesn't matter much, either.  So personally I would be okay with her eating in her room, and I would be (only slightly less) okay with her drinking Fortisip instead of eating the family meal.  I would NOT be okay with this happening without supervision because, well, most likely it will not happen at all if an adult is not supervising.

Please keep us posted. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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LaraB
Indeed here eating in room is one step away if that from hiding food under bed etc
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Enn

I agree with everyone who posted above. 

Every bite needs to be supervised and proven to have gone in and stayed in. You have to watch it all. I remember how unnatural that felt and I kept forgetting to watch all the food go in. I remember turning around to get something for the table and she dropped food! It does not matter where it just matters that she did and you saw it. 

the most challenging part of ED is ensuring you are ready for battle. That you will make sure she eats, that you need to figure out the ED tricks like hiding food etc, and having a plan like going to the hospital even if it is multiple times  per week, to Ed you mean business. The first change came from me then when I figured out ‘how’ to get her to eat, then it seemed to move  forward bit by bit.

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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kgm
Thanks everyone for your feedback. I’ve read a lot of advice and stories on this site for a long time!
Just to clarify a few things for people...when our daughter was eating in her room, she was always with me. She now seems incapable of eating anywhere else which is why we are insisting on the dinner table at our clinicians advice. 
We have also been advised that the fortisip has just become another ‘rule’ in her brain and it is to go. 
Interestingly when I got up this morning, she came out of her room straight away and sat at the table. Could to get her to eat anything but felt like a massive step!
 Thanks everyone again. 
15.5 year old daughter diagnosed anorexic January 2020. Currently doing FBT after a 2 month hospital admission. Very very slow going.  
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Enn
Thanks for clarifying and so glad she came out of her room. That is a big step! 
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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MKR
Yay, a step in the right direction!

Keep going 😀.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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Torie
Enn wrote:
You have to watch it all. I remember how unnatural that felt and I kept forgetting to watch all the food go in. I remember turning around to get something for the table and she dropped food!

Ditto.  It took me so freaking long to get back in the habit of watching every. single. second of every single meal.  It is like walking with a toddler on a busy street - there is no taking your eyes off. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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kgm
Big positives last night. After a hellish day of her refusing to come out of her room to eat, she suddenly appeared and asked for a bowl of wheetbix. She then plugged into her MacBook and ate, constantly checking around her that no one was focusing on her. She then asked for seconds. And then thirds. I then lay with her for hours as she cried about what she’s just done and how she would now be fat. 
This this morning, back to normal. Refused to come to meals, saying she’s eaten enough for days. And then low and behold, afternoon tea comes round and she does the exact same as yesterday!
I did notice that she waited until her sister had gone out both times. That seems to be our major hurdle at the moment. 
But I’ll take both those wins!
15.5 year old daughter diagnosed anorexic January 2020. Currently doing FBT after a 2 month hospital admission. Very very slow going.  
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Enn

Yes those are huge wins. My d would compare to others when eating and so sometimes I had to split the family up when she had to eat. 

we also learned that d ate in absolute silence and we could not look at her at all. Took awhile to figure all that out . 

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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kgm
Well, D was admitted on Friday due to her heart not coping.  We had just managed to start to get her to eat breakfast, lunch and supper at the dinner table successfully.  Still working on the other meals!  She's hating it in hospital which is great.  In the past she's loved it and not wanted to come home.  She's been talking more about how she's feeling which is also a relief and eating or having her supplement drink without any problems on ward.
Her father and I are exhausted though and have actually been thankful for this short break.  And her sister is loving having our undivided attention!
So we prepare ourselves for the battle again tomorrow when she's discharged.  Good luck out there everyone!
15.5 year old daughter diagnosed anorexic January 2020. Currently doing FBT after a 2 month hospital admission. Very very slow going.  
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LaraB
Loads of positives in your post KGM even though your D had to be admitted. Glad you have had a chance to get a rest. Xxx
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Foodsupport_AUS
Sorry to hear that she had to be admitted again, but also pleased to hear that she had started to eat with your support at home. That is a big change for her. 

Restore and replenish your energy for when she comes home again. it sounds like this is the start of things changing. We all hope it happens straight away but for many it is so slow. 
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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Enn
I am wishing you the best during this transition. 
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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kgm
Thought I'd give an update on how we're going and ask for some advice (isn't that all I do?! Oh how I hope to be on the other side one day helping others).
Our D has steadily decreased in weight since we started FBT at home.  She has had 2 short hospital admissions in the last 3 weeks due to her vitals being unstable.  Our hospital has offered us an inpatient spot there.  Our D started off on this programme in January but was discharged when NZ went into lockdown due to Covid in March, so she didn't progress through the stages.  
Our FBT team (not attached to the hospital, long story) aren't fans of long term admissions but we really don't know what other option we have.  She hasn't been able to even maintain her weight in the last 3 months, let alone gain.  She seems to have progressed to a certain point and now refuses to shift.  On top of that I have trigeminal neuralgia (google it, it's cracking) which means I sometimes give in to her in order to keep my own stress levels down.
 I feel like if we can get her weight up (she's 12kg from her goal weight) while she's in hospital, her brain will be in a better state to deal with the FBT when she starts transitioning home.
Our D also feels like she would have a better chance in hospital because, and I quote, "I feel like they have more power over me than anorexia because they can put a feeding tube in me if I don't eat".  Something my H and I can't do!
Anyway, that's where we're at.  
Hope everyone is holding stronger than I am!
K
15.5 year old daughter diagnosed anorexic January 2020. Currently doing FBT after a 2 month hospital admission. Very very slow going.  
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Foodsupport_AUS
Sorry to hear about the trigeminal neuralgia, as well as that your daughter continues to deteriorate at home. With her admissions have they managed to get her weight up at all? Either way you have been trying FBT at home for more than a month without progress and there have some studies which suggest if it is not working at this stage there needs to be a change in plan. Your D seems to realise that she needs more support to enable her to get enough food in, so if that means doing the inpatient program that sounds like a plan. 
In Australia there are no options for longer term admissions. What would happen here generally would be admission for some solid weight gain 4-5kg then trying again at home. It works for some and not for others. What does your team see as being the best plan forward?
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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Kali

Hi Kgm,

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I feel like if we can get her weight up (she's 12kg from her goal weight) while she's in hospital, her brain will be in a better state to deal with the FBT when she starts transitioning home. Our D also feels like she would have a better chance in hospital because, and I quote, "I feel like they have more power over me than anorexia because they can put a feeding tube in me if I don't eat".  Something my H and I can't do!


This sounds like a really good plan. It doesn't matter where the refeeding happens, it just matters that weight restoration starts and being fully nourished happens.

We did something similar. Our daughter was refed the first time in the hospital and it started off recovery. When she took some dips after leaving the hospital we were able to help her restore weight at home.
There will be plenty of time for you to feed her and get back into the groove of fbt when she comes home since she will most likely need to be closely monitored for a long while with her eating.

Hitting it early and hitting it hard with the best available alternative plan for refeeding would be a good thing to do if you are not seeing progress at home. And your daughter is asking to go to the hospital. Since you mentioned that she had a heart issue and her vitals were not ok recently the hospital might be the best thing for now, where her overall health can be closely monitored. And don't think that you have somehow failed at FBT; many of our kids need strong interventions in order to make it into remission, and eventually, recover.

Sending strength. 
Kali

Food=Love
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Barberton
Hi @kgm, Is there a reason that you have not accepted the inpatient spot at the hospital? Follow you gut instinct to get some weight on her in hospital and then try again with FBT once home.
D fell down the rabbit hole of AN at age 11 after difficulty swallowing followed by rapid weight loss. Progressing well through recovery, but still climbing our way out of the hole.
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