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

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Jeneldridge
It's been a little while since I've posted.  My 15yo daughter was diagnosed with AN-R in January.  She was in partial hospitalization (PHP), then inpatient, from late Jan through late March where she lost an additional 20 lbs.  The good news is that she's has been in residential treatment 4 hrs away from us since late March, and is almost fully weight restored.  Her treatment team is planning to have her step back down to PHP, which will allow her to move back home.  She is desperate to come home, and we very much want her back with us, especially since we will have the peace of mind that she will still be in intensive treatment 12 hrs a day for the time being.  

All of that said, her ED still has a very firm grip on her, and her anxiety and desire to restrict seem to be stronger than ever.  She tells us that she's only eating now in order to go home, and she plans to restrict again as soon as she gets home.  We've discussed this with her therapist, who says her attitude is not atypical and that she may be either testing us or trying to placate her ED by saying that.  Her therapist says that, despite what she's telling us, she continues to complete meals and gain weight, so while what she says may be concerning, she's doing "all the right things."  She thinks that we should give her a chance to come home, start PHP, and see how she does.  We do have a very clear discharge plan that says if she restricts again and cannot get back on track within 2 weeks, we will consider elevating her back to residential or inpatient care.  My husband and I will not waver on that, and we have been very clear with our daughter that we will not allow her to go back to her old ways without intervening.

I'm not sure what feedback I'm looking for, but I'm so anxious about letting her be discharged knowing that she's already planning to restrict as soon as she leaves.  Would we be fools for letting her step down anyway?  Or, as our therapist says, do we need to call her bluff and hope she makes recovery minded choices when push comes to shove?

As you can probably tell, I'm confused and anxious, and just want to do the right thing to support our daughter's recovery.

Thanks for listening.

Jen 



15yo D diagnosed with AN-R Jan 2020. Hospitalized since late January. Almost fully weight restored as of late May; ED voices remain very strong.
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Enn

There is always a time when they are discharged and we hope they will comply when they get home as they did in hospital.
Many have eaten to get discharged then they restrict and end up back in IP or residential. That is not a failure, it is education and information about how strong ED is. Many do need to cycle a bit before things get better. 

Having the home routine set up just like her current situation is helpful. Times and types 
of food and keeping that going at home is what helped me. I think having that plan about when care might be escalated again may help motivate her too.I would ask how to handle certain situations when home and explain to d what will happen if certain things occur. Then when and if they do happen you must follow through. 

sending my best

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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Enn

Ps I agree that her saying she will restrict may be a way to appease ED. 

 

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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PleaseEAT
It’s very difficult when they transition to home from hospital
we found keeping to the routine pretty much exactly as the hospital ran helped
and no decreases in any of the meal plan at all
ie:making sure the margarine/bitter was put on the bread 
as we were advised as soon as they start to restrict in one thing they will start in another 
SO you need to have eyes on all meals for a very long time 
unfortunately they don’t come home from hospital cured 
I totally understand why you are feeling the way you do as you know they are “safe” in hospital 
we did have tears all the way home (hour drive) then crying once home, self harm, plus general mental anguish it was horrible but I just tried to stay calm, massaged her, slept with her, listened to calming music and doing breathing exercises with her, it slowly gets better
 I hope the transition goes as well as it can
all the best 
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teecee
I love your firm resolve. This positive attitude will help your daughter with the best chance of recovery but I think you have to try. Recovery isn’t linear and we move forwards and backwards but we learn what works. Good luck when she comes home....I can imagine how much you want her to come home so I’m sending you good wishes for three steps forward and no steps back during those two weeks. We often gave our daughter a window of opportunity to turn things round when she relapsed....she always just managed ....it does get better. Xx
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Foodsupport_AUS
This really is so normal and typical. It is impossible to know what will happen when she gets home, she may be appeasing her ED, she may truly be thinking this is what she will do. Having clear plans and rules, such that home is really just like her current treatment place, just with nicer beds and family, is often the best step forward. Being clear about what the follow up plan will be, and how you will decide when you will move back to the higher level of care can make it easier for you to cope with the uncertainty. 

It is great that she has gained weight well whilst inpatient and has been managing to complete meals. This means she can do it. 
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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Jeneldridge
Thank you all for your helpful responses. I really appreciate having this resource for support.
15yo D diagnosed with AN-R Jan 2020. Hospitalized since late January. Almost fully weight restored as of late May; ED voices remain very strong.
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Kali
Hi Jeneldridge,
I know it strikes fear in every parents heart when they realize that their child has been through treatment in residential, is weight restored, and still they want to lose the weight they have gained and go back to restricting when they come home. It is very typical, and they are often not well when they first leave treatment.

It happened to us also. D. came home weight restored and wanted to lose the weight. She was still very ill after 3 months in an excellent residential program and full weight restoration.

This is where we as parents and the outpatient treatment team come in. Our journey was not perfect, she was weight restored, she came home and lost some weight, I got some weight back on her, repeat and repeat. But somehow my d. is recovered, was able to go away to college and be successful,  and is eating her three meals a day.

It just takes a long time. And a lot of vigilance.  Here are some of the things we did when she came home:

I kept to the timing of the same meal schedule as she had in the treatment center.

I had a meeting with her and the dietitian before she left residential. The dietician had her identify 7 meals for breakfast, 7 for lunch, and 7 for dinner as well as snacks that she would agree to eat. Each meal had been vetted by the dietitian as having enough calories and nutrients. (my d. was 18 at the time, so we were giving her more responsibility to be involved in her recovery) I took that list home with me, got myself a binder, and put all the recipes in it filed under breakfast, lunch and dinner. When she came home I made those over and over again. Each week I would try to add a new recipe to the binder and make it for her in order to try and broaden her food choices. After a year or so the binder was full of things she knew she liked to eat and she took it off to college with her. She used it the first year she was there and then didn't need it anymore.

I served all the meals and after awhile when I saw she was eating, I allowed her to plate her own food while we watched and if she didn't take enough I insisted she take enough for a full portion. I modeled portion sizes by taking the same amounts on my plate. I didn't let her drink water with meals, only caloric beverages. We started to allow her to take her snacks on her own, again while we made sure she ate them and they were adequate. I found I had a new voice when confronting the ED. My old voice before she went into treatment had been full of panic and fear and even some anger and frustration when we were trying to get her to eat. My new voice was calm, supportive, confident but calculated and based on one goal: making sure she ate her three meals a day. 

I made a menu on Sundays with her input, did the shopping for the week, and then posted the menu on the fridge so she would know what she was eating every day. It seemed to help if she knew ahead of time what to expect. In the treatment center they had also had a weekly menu and they could choose between a couple of different options for meals.

I didn't talk about anything stressful during meal times. Make conversation, talk about things she wants to do, play some music she might like in the background. When they feel stressed it is more difficult to eat. If she was struggling to complete a meal and took an hour to eat it, I sat there for an hour with her and talked about something else. I put flowers on the table and tried to up my cooking game and used fresh ingredients and herbs. 

We kept her in outpatient eating disorder treatment as long as she needed to be. She still sees her therapist so I guess you could say she has been in treatment of some sort ever since then, 4 years ago now. 

And when she lost weight I was there serving those meals and doing my best to get that weight back on. When she lost weight in college I showed up and insisted that we make a plan for her to gain it back. And she did.

The year after leaving treatment at home is perhaps just as important in guiding someone towards remission than the treatment itself, since they need to learn to incorporate what they have experienced in treatment into their everyday lives, even as they feel resistant to that. The treatment is the first step and provides a foundation. But remission and then recovery can happen at home.

I was frightened by the fact that 50% of kids who leave residential go back for another stay. When she was at home for 6 months she could have gone back and we found ourselves discussing what to do. things were not good and she had lost weight. She didn't want to go back; she had started taking some college classes part time while living at home, so at that point I was able to arrange to work from home and just go into the office 2.5 days a week and feed her the majority of her meals and get the weight back on again. It was really difficult while working; It took me 5 months to get 7lbs on her. But in the end the weight went on and things got better.

You've got this. Ask any questions you might need to or come here and vent when she returns. I hope things will go well.

warmly,
Kali
Food=Love
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