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pjdj

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Reply with quote  #1 
d came back from in hospital a week ago. as soon as she returned home she went back on her promises - to eat what we give her, to not exercise, to listen to parents.

would not let her plate food. when we give her a plate she squishes it, throws it out, screams and wants something much less and different. every meal is a negotiation for less/different/something else.

stands all day long. sometimes for 10-12 hours a day. continues to go up and down the steps.

hours of talking about giving up control fall on deaf ears. reminder that we may end up back in hospital do not scare her. incentives to be back in school do not result in change of behavior. says i know what i have to do but i cannot do it and i dont want anyone to tell me what to do "... i dont want even a smidgen of control over me..."

does not believe anything is wrong with her. loosing weight steadily. down to about 82% of required weight. vitals are all ok.

no matter how hard we try, how we slice and dice it; she eats about 1700-1800 calories a day and no more. almost like she has a super computer in her brain that tells her the exact caloric count. she has made up her mind to not gain weight regardless of consequences. 

we are almost ready to take her back in-hospital. what should we do.
Foodsupport_AUS

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Reply with quote  #2 
Transitions are hard. They are especially hard for someone with an eating disorder. Those promises she made are truly not keepable for her, her anxiety gets in the way. The only way she can do this is if she feels she has no other option - so what can be done? No one here ever got their child to promise to eat all they were given, not to protest, not to exercise and had them keep that promise. If it is going to succeed at home, and sometimes it can't, then. It is up to us to not negtotiate, to redirect the screaming and exercise and insist on what is not negotiable, food and stopping exercise.

Barricades, locks, bear hugs, long drives in the car, increasing food have all been used as means to try to stop exercise, insist on sitting. Going to activities where sitting is essential, we attended a lot of movies, mostly bad ones.

Meals it comes down to the same thing. She can't reason with her eating disorder, so we shouldn't try either. We can empathise, offer them love and support, but she still has to do the terrifying thing of finishing those meals. Making things not at all negotiable is your best bet. She cannot see past that meal at the time, so hospital in a few days is of no consequence at all.

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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.
OneToughMomma

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Reply with quote  #3 
Food support is right. Your d has not ‘made up her mind’. Her mind has been high jacked by ED. My d couldn’t remember even the most stand out moments from when she was really ill. Her brain was not working at all.

So, pjdj, it is not up to your d to keep promises. She needs someone else to fight ed for her. Can you do it for her? What kind of support do you have from her team? They should be advising you now. Do you have a family, community, or faith support? Now is the time to ask for the help you need.

It might be that you need another admission to reset and make a better plan. If I were you I would be asking her team to help me help her.

You could also read in the hall of fame section (sorry, I’d give you a link but I’m on my phone and it’s almost impossible). There is information about transitioning from hospital to home.

Ask us here if you have any specific questions.

I know it’s heart-breaking to see your d fall back in her promises to you. Please understand that it is not her fault. She just needs lots more support to get better.

xoOTM

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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]
pjdj

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Reply with quote  #4 
Thank you all! Fighting the battle. Still restricting a lot but have managed to keep the weight consistent. She is around a 100 pounds now but today was a bad day. She has figured out how I add extra to her meals. It is very taxing on us but hoping tomorrow be better
tina72

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Reply with quote  #5 
Hi pjdj,
so sorry that this happened but great that you stopped the weight loss. That is the first step. Now you need to find out how she can gain some weight.
Try to do all the adding secretly. It is very diffecult but that is the best way. What they don´t see and don´t know makes no fear.
I did most of the cooking in the night when she was sleeping or in the morning when she was in school. Then I put portions into the fridge/freezer. I did different portions for us and for her and marked them inconspicuous.
When she now lost confidence in you, you have to options:
you can ask hubby to plate her for some time
you can try to tell her that you just plate her what she needs at the moment and that you had to add something because you calculated the meal wrong
Try to get someone to distract her if you have to cook when she is at home.
Try to outsource some cooking if possible (family? friends?).
It is very important that this does not happen again. If she loses confindence you could have a set back. She needs to trust you.

What can you do about the restricting? Are you able to plate meals now?
Tina72
Kali

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Reply with quote  #6 

Hi Pjdj,

Sorry you are going through this...I have a suggestion.
When I was trying to get my d's calories up I used a nutritional product called Benecalorie. It can be ordered online. Each small container has 330 calories and 7 grams of protein. So if your d. is eating 1700-1800 calories a day, and you add a container to each of her meals, you will up her intake by 1000 a day. That might make a big difference in trying to help get her weight up. 3500 extra calories should roughly represent a pound of gained weight although that will differ slightly depending on the person. By adding 7000 calories a week you could get to the 2lbs a week weight gain without visibly increasing the footprint of the food on her plate. Here is the nutritional info.
[Benecalorie]
It is tasteless and has some nutrients added in and some fat as well. It can be added to sauces, omelets, hot cereal, soups, mashed potatoes, etc.

I used it when I was trying to get more weight on my d. The only thing I don't recommend is to put it in smoothies, heavy cream and honey taste much better in those.

But onto the problem that your daughter thinks that you are "adding" things to her food. In reality you are just giving her what she needs. I did most of the cooking while d. was at at her part-time job she had a few afternoons a week, or while she was up in her room sleeping, since she was always tired. You will need to figure out how to keep her out of the kitchen. Encourage her to do some other things. I hid the benecalorie and used to go and quickly get one to add to her food when she wasn't looking and then disposed of the container in a hidden place as well. When my d. accused me of adding too much butter or using whole milk instead of 1% or whatever the disorder was complaining about, I merely said "I'm giving you what you need" and left it at that. She could rant and rage and yell that I was trying to make her fat and I would just repeat firmly one more time "No one is trying to make you fat. I am giving you what you need" or "this is what we have" then I either changed the subject or just ignored any further drama. Eventually, when her weight was better I switched to just adding more butter, cream, olive oil, etc, to make higher calorie meals.

Even though you may feel confused and powerless, try to remember at all times that YOU are the parent. YOU are in charge, and YOU know what is best for your daughter and what she needs and summon your inner resolve. It also never hurts to have a sense of humor and to keep a cheerful and matter of fact attitude and try to laugh with your daughter when you can and if possible, plan some fun things to do together.

Also I'm not sure where you are located but you might want to look into the possibility of seeing an FBT therapist if you are going to refeed at home. There is a part of the board which has reviews about providers. Also here is a link to a website which has a list of trained providers.

http://train2treat4ed.com/certified-therapists-list/

warmly,

Kali


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pjdj

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Reply with quote  #7 
Thanks to both of you and for this wonderful forum. She is 13, we are in the US, in New Jersey. To recap, 3 weeks of FBT, a month of inpatient eating disorder hospitalization hasnt done much for her mindset. I have managed to keep herweight to about 98 lbs but the last week she is misbehaving. I dont think she wants to gain weight. Does not want to do any program and negotiates portions as well as the type of food. She is highly resistant and has massive control issues by her own admission. I am just concentrating on bringing her weight up by hook or by crook and hoping that weight restoration will bring more mindfulness.
pjdj

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Reply with quote  #8 
A clarification please: so this does not taste okay in smoothies but okay in yoghurt? Thanks.
Kali

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Reply with quote  #9 
Hi pjdj,

A good breakfast yoghurt recipe I used was a yoghurt parfait.
I never tried using the benecalorie in yoghurt so don't know how it tastes but you could always try it. 

But for yoghurt parfait:

Full fat vanilla yogurt with a teaspoon of honey mixed in High-calorie granola and some cut up fruit. You could also try whipping some heavy cream up with a little vanilla and adding it to the yoghurt, there are 52 calories per teaspoon and I think you could easily add 3-4 teaspoons or so and it would still taste good and not look too different although I haven't tried it. Raisins and/or dried fruit also can add some calories to it.

Granola has sort of a reputation of being "healthy" even though it can pack a really good caloric punch. 

pjdj, there are a couple of families from the northern new jersey area on the ATDT board if you are in that part of the state.

Kali

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Foodsupport_AUS

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Reply with quote  #10 
Quote:
I dont think she wants to gain weight. 


I would go so far as to say she is terrified of gaining weight. This is one of the core problems in typical AN. She may want to get better, but only if it doesn't involve gaining weight! My D was stuck in this mindset for the first 7 years of her illness. Every bit of weight gained was against her will, and increased her anxiety levels further. We got to a point around 3.5 years in where she recognised that losing weight made things worse. It is typical with AN for the person with the illness to be a reluctant patient, that does not mean we don't offer treatment, but it does mean that we as parents need to decide what has to be done and do it. Set up the boundaries. Negotiating control, also not worth it. 

Benecalorie sounds like great stuff. We don't have it here. 

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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.
tina72

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Reply with quote  #11 
Hi Kali,
I have a question about benecalorie. It seem to be not available in Europe and I can order it by shipment from US but it seem to be very expensive to me. They want 160 € for 24 portions which is 6,66 € each portion. Is this the normal price in US?
Tina72
deenl

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Reply with quote  #12 
Hi Tina,

We used it a lot and ordered it from the US for delivery in The Netherlands. My husband ordered it so I will ask him this evening for a link.

Warm wishes,

D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Kali

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Reply with quote  #13 
Hi Tina72

I ordered it online from Walgreens which is a pharmacy/drugstore in the US. It was 36.99 for 24 containers which is roughly $1.50 per container which I think works out to 1.22 euros (?). Then there was probably some shipping and tax. I'm not sure why it seems to be so expensive in Germany. Do you think there might be a product produced in Europe which is comparable? My impression is that it is used in nursing homes and hospitals and other places when people have a compromised ability to eat due to illness. Here is the link I ordered it from:

https://www.walgreens.com/store/c/benecalorie-calorie-and-protein-food-enhancer/ID=prod6148714-product?ext=gooPLA_-_Home_Medical&pla&adtype=pla&kpid=sku6132158&sst=5a06b28b-e512-48b3-9427-99bd4e29444b&reactjs=true

It says on the site that they cannot ship to Europe though...but Deenl seems to have been able to get it sent to the Netherlands, so let's see what she says. If you want it and are not able to get it for a more reasonable price, I would be willing to order it for you and send it over and we can work out the money.

warmly,

Kali

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pjdj

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Reply with quote  #14 
I ordered it from Amazon at $36.99 for 24 packs. Thanks Kali for the tip.
tina72

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Reply with quote  #15 
Hi there,
Thanks deenl, I will wait what your husband says. If they could send it to the Netherlands, that must be possible to Germany, too.
Thanks Kali. My only possibility is amazon.de and they want 192 dollars or 160 Euros for 24 pieces. This is about nearly 6 times what you paid.

There is no equal here, I phoned up Nestle this morning. The only have the normal boost drinks and they are flawoured with vanilla or strawberry. And that is only 200 calories per 100 ml so I think benecalorie would be heavier.
I would like to use it to be able to add just to my ds food and not to all of us [wink] Hubby and I gained some kg which are not that healthy for us...
Why do we gain weight so easily and the kids so hard???

Kali, thank you very much for your offer to buy it for me if I can´t get it here. I hope that will not be necessary, but I appriciate that a lot.
Can you tell me how long it is normally durable?
Tina72
tina72

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Reply with quote  #16 
Hi deenl,
did your husband remember where he ordered the benecalorie?
Tina72
deenl

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Reply with quote  #17 
Hi tina,

Sorry for the delay. He ordered it from ebay, usually a different supplier each time based on who was the cheapest and who would ship to the EU.

Best of luck,

D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
deenl

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Posts: 969
Reply with quote  #18 
One other thing. In the beginning I would just add one teaspoon, then 2, then a tablespoon and so on. There is a change in taste and texture so I just added it gradually and up to the point where the change was notices. Therefore, some meals would have one tablespoon added and others 1.5 containers of benecalorie.

Warm wishes,

D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
tina72

Caregiver
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Posts: 926
Reply with quote  #19 
Thanks deenl,
for the ebay link and for the tipps with addition.
I am not that great ebay fan but I will try that.
I got in contact with Nestle about it and they really think there is no market for that in Europe. ???
Tina72
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