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

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Georgiego
Hi all, feeling a bit worn down at the moment and wanting my life back before this ed took over. I'm most weary of the negotiator in my d which I know is the ed. We're about 3 weeks out of hospital so about 6 weeks into re-feeding. In our last FBT session, they said it's up to us, the parents, when we change from six meals a day to something else. We can spend time with the dietician when we are ready to do this. I wonder how you decide, she is eating a lot of food and gaining good weight (quite a few kgs over 3 weeks).

The FBT team said trust your gut. Really? They asked my d if she had a goal weight in mind, she didn't know. She doesn't even know her weight now and is scared of knowing. Her heart is a lot better, the ECG was good and bloods also normal, and the doctor says she's doing really well in terms of refeeding and weight gain.

My d is now trying to negotiate sleep overs and outings with her friends, and eating less food. Some days it does my head in. I tell her she can do sleepovers when she's ready to eat the meal the parents make for her and eats it all. She doesn't like that. I don't think she ready at all as she can't even eat in public yet. I'm interested in how others decided they were ready to change the meal plan? At what point have you decided d is ready to have some input into what she eats (not quantities) but foods?

I'm still trying to get through some reading, everything is so new and there's a lot to take in. Thanks!
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Foodsupport_AUS
It is exhausting isn't it? I truly understand wanting your old life back. 
Your team sounds great, they are making you the captain of the ship, that is a great gift from an ED team. Not so sure about asking your D for a goal weight, it will never be high enough. 

This is unfortunately a marathon not a sprint, It will be some time before she is ready to do those sorts of things. You will know when the negotiation slows down and she starts focusing on other things than weight and food. She can always make requests for foods, but it is up to you whether you think this is ED or your genuine D. 
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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mjkz
I learned early on that if I wanted to survive I could be a negotiator.  I would tell my daughter we weren't going to discuss something and we didn't.  If she continued, I'd either leave the room.  If she followed and continued, I'd put on a pair of headphones and listen to music.  We had no negotiations on food, eating less, what I gave her to eat, sleep overs, anything like that.  You know of course when she is asking or really trying to negotiate.  Start saying no and stop the conversation there.
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Torie
If she wants a sleepover that badly, you can probably find a way.  We did all kinds of crazy things like picking d up in evening of sleepover for some made-up reason when actually what was needed was that she had to come to the car for her snack.  THen in the morning we had to pick her up before breakfast so she could have normal breakfast at home.  Of course, D hated that, but that was what was needed in order to go to sleepover.  Many who came before me did similar, which is how I knew that this was an option. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Torie
Georgiego wrote:
 At what point have you decided d is ready to have some input into what she eats (not quantities) but foods?


Short answer: It feels like forever.

Here's my advice: Keep a *very* firm grip on those reins.  You're doing GREAT, but this is the very early days, and progress is s-l-o-o-o-o-o-o-w.  FIrst step might be to let her try to pour her own milk.  Not enough? That's okay, we can try again tomorrow.  Next day not enough? Again, top it off and that's okay can try again tomorrow.  THird day still not enough? That's okay - guess we're not ready for that yet and can try again later on.

I learned that here.  Also learned that the most important thing is to prevent backsliding.  If you give an inch too soon, they can slide waaaay back down the hill before you can blink.  Much better to prop them up firmly as you navigate that final bit to the top of the hill. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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ValentinaGermania
Yes, it is best way to listen to your gut. You will know when she is there. When she is behaving normal again, eating without any stress and restriction.
RE meal plan, most parents need to stick to the 3 meals 2-3 snacks meal plan for years. At least until they are grown out. There metabolism increases and most ED patients need a lot of food to just maintain their weight. My d is nearly 20 now and we are in year 3 of recovery and she is still eating same amount as her dad and still having 3 meals 2 snacks (we never had 3) just to maintain her weight. They often have that super metabolism.
Keep feeding. There is light at the end of the tunnel.
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PurpleRain
Hello Georgiego, how old is your D? Mine is 14, was 13 when she became ill. I had absolute control over food for quite some time, months. She has been truly WR (highest percentile ever) for 5 months now. I give her appropriate options to choose from, she can choose flavours and little by little I had allowed her to give more input, but not at the beginning, not for months, not until truly WR and some more, and even now, not always, not in every meal. For us it was (is) a very gradual, very slow, not linear process. Better safe than sorry. I "test" her sometimes, see if she chooses what seems less caloric, or less quantity. Since she is choosing well, she can keep choosing, should she started choosing "healthier" (not) options, I would give her less opportunities to choose for a while. I hope this makes sense.
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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Hope42019

Our D asked to go to a sleepover 4-5 weeks after we started refeeding. She was 14 then. Those 4-5 weeks were hell and we felt like it would do her some good to spend some time with friends especially if she was asking. We had felt so isolated for that time. It was hard but we made it work. We did breakfast and for lunch had to do a loaded calorie shake so I could feel comfortable knowing she got the majority of her calories before she left the house. My D would eat in front of others at that time but it was still small portions. I also picked her up early the next day so we could continue our daily meal plan. It worked and her spirits were up when she came home. We just didn’t do sleepovers very often though. 

My best advice for dealing with the negotiations is be strong. Once you start giving more control, options and choices it feels like that is all you will be doing is negotiating which is exhausting. I wish we would have waited longer before giving our D more control over some of her meals. It’s way more difficult trying to take that control back. We are living and learning. 

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Barberton

Oh, the negotiator is so annoying. When your child is trying to be independent (and you want them to be) but can't carry it out because of an ED, it feels like going back to the days of having to strap your toddler into a car seat to drive somewhere!

Understanding about "mental hunger" from Tabbitha Farrar helped me to follow my gut about when to allow my d to make decisions about food/eating and when I needed to do it for her.  

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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ValentinaGermania
Hope42019 wrote:

I wish we would have waited longer before giving our D more control over some of her meals. It’s way more difficult trying to take that control back.



This is what indeed most parents experience here. My hands up, too. I learned that you cannot do things too later with giving control back but you can do things too early.
Keep feeding. There is light at the end of the tunnel.
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Scaredmom2019
Not sure how old your D is but mine is a little older at 17. I was able to tell her two best friends that "eating" was crucial to my D's health..without going into details or labels. They both now report to me that she has completed her meal. My D knows this is happening and so doesnt fudge with them either as I made it clear this was VERY important for her to eat full meals.

Also we have done facetime for snacks. She  just sets the phone so I can see her and she eats while continuing to chat with her friends etc. It has given us some room for a "life" without giving any room to the ED.
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