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hopelove

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Reply with quote  #1 
Hi all,

 So our d was fully weight restored July 2016 after 3 1/2 months of intense refeeding at home and then 1 month Day Program at an Eating Disorder treatment center. As she was still probably growing, however, she was supposed to continue to gain weight over the following year. Well, in spite of our best efforts, she lost 2 pounds and then maintained that new weight all year. This all while my husband and I continued to work very hard to keep her from losing any more weight. We continued to take her to dr. appointments, counselling, serve her meals and snacks, etc. that whole year. Eventually, the doctors decided that she needed the Day Program again to help her gain the needed weight, even though she was eating every day at home...just not quite enough. By the way, we tried to get her to start taking some responsibility for feeding herself, but she just never would do enough.

  This year, unlike last year, our D decided that she was not going to eat at the program in protest (she wanted to stay home); so by the end of the first day, the doc said she had to (with our permission) have an NG tube feeding. Well, she resisted, 3 people had to hold her down, she fought so much that the doc could not get the tube in. The doc said we should try the next day when her trained helper (nurse practitioner) could help, instead of mom and dad and a nurse holding our D down. D refused to eat the next day as well, so with more Ativan given than the first time, trained nurse practitioner and nurse and mom all holding our D still, the tube was placed, but before we could get the supplement in our D managed to pull the tube out. So D was "sucessful"--she avoided the tube feeding which she says she thought of as equivalent to rape, and she immediately started eating again at home, but again just barely maintaining her weight. 

  The doc then recommended her for residential treatment, not willing to continue trying the day program. My h and I have spent a month researching places, refeeding at home, doing our best to decide what to do. We picked an out of state residential program. D still says she might refuse to eat at the program--she still wants to eat at home instead--and she might stage a hunger strike to avoid having to stay there. This place does not do compulsory tube feedings, but if vitals are bad they send you to a hospital that does. 

Our question is basically second guessing--maybe we should let her stay home and keep trying to get her to gain a little, but likely see her mostly maintain her weight, at a level which is "healthy" according to the average for her age, but dangerous according to ED doctors who know her history, on the chance that she might be a rare case that does better at home in the long run than in a program she has decided to hate. Or, try for a big change by going to the program and hoping that she gives in and cooperates this time, gaining quickly and beating it once and for all. The risk is that she takes a "moral" stand and ends up losing weight at the program, coming home with another bad experience of forced feeding that she considers torture.  Any thoughts are appreciated!

 

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Hopelove 
toothfairy

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Reply with quote  #2 
Hi there,
Your D is around 13 right?
quote
"This year, unlike last year, our D decided that she was not going to eat at the program in protest (she wanted to stay home); so by the end of the first day, the doc said she had to (with our permission) have an NG tube feeding. "

This is not your daughter deciding, this is the illness - anorexia that has taken over and hijacked her brain.

quote
"D still says she might refuse to eat at the program--she still wants to eat at home instead--and she might stage a hunger strike to avoid having to stay there. This place does not do compulsory tube feedings, but if vitals are bad they send you to a hospital that does. "

I would not tell her or give her a choice as it is feeding into the anorexia, and this is all anorexia talk.
If you decide to put her into residential, then it is a requirement that she goes, not a choice that her illness gets.

quote
"The risk is that she takes a "moral" stand and ends up losing weight at the program, "

This is not a moral stand, it is a potentially life threatening illness that she cannot control.

So my advice to you, is make your decision, do not negotiate with her anorexia.The bottom like is getting the weight back on, to full weight restoration plus 10% as she will be growing,and she should be gaining right up until her 20's.
So if you cannot get her weight right back up to get her to a good state at home, then it needs to be done in a good evidence based ED facility.
Best wishes

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
toothfairy

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
toothfairy

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
Kali

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Reply with quote  #5 
Hi hopelove,

Sorry you are in this situation with your d. How underweight and how tall is your d? Is she in medical danger? Also how old is she? How much does she need to gain? 

IF she is not in medical danger perhaps you could reframe the situation like this:
She can stay home IF she agrees to eat 3 meals and 2-3 snacks a day and agrees to be fully nourished and weight restored at home. And agrees to increase the amount of food she is eating. If she will not agree to this, then you would want her in residential treatment. You could even set a time limit, if you are comfortable with that. So for example maybe she has one month at home to show that she can make progress, and if she doesn't gain during that month you will want to her go to residential. It sounds to me as though she is not ready to do this on her own and will need meal support at all meals and snacks.

At one point I gave my d. a choice when she had lost some weight after her initial weight restoration in a treatment setting. I let her know that either I and her team could help her at home, or she could go back to a program. She chose to stay home and I think that she at first thought that she could continue to not eat enough....but I cranked up the calories and made it clear that she had to eat all meals at home, and that she would not be able to return to college until she was at an acceptable, weight restored, weight and could eat independently. At first, I was only able to get 4lbs a month on her (1 a week) which didn't seem that great, however later on, I was able to help her gain 2lbs a week.

So you could let her know that at home someone will be eating all her meals with her and that there will be weigh-ins (we did blind weigh-ins during that time since the weight gain was distressing for her) so that you can see that she is making progress. There is a great high-calorie thread that you can get some ideas from. Smoothies are also really helpful:

https://www.aroundthedinnertable.org/post/high-calorie-suggestions-696425#gsc.tab=0 

Compassion, support, good conversation at the dinner table, a clear expectation that she would eat, encouragement, and reminders that she will not be able to get well or live the life she would like to have if she did not eat enough were all helpful during refeeding.

What kind of outpatient support team can you put together?

Kali



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hopelove

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Reply with quote  #6 
Thank you both for your timely replies! As is always the case, it's hard to include all of the details of one's story without making a post too long. The docs say D needs about 6 more pounds, but right now her vitals are usually ok, not in immediate danger. However, we have already given our D several ultimatums to give her a chance to change her behavior at home and avoid going to the day program earlier this year and then to avoid going to the residential program. She would not agree. She only kept saying things like, "I'm in charge of what I eat. I only eat what I want to." etc.  It is unusual in that she has a great attitude about most of life, laughs and hangs out with friends and siblings, seems to be in good spirits. She even finishes a couple meals a day most days--she just stops, usually at dinner, and says "that's all for me." It means that her weight is flat--again at what would be for an average person an ok healthy weight but all the docs say no, for an ED person, she needs to gain until she stops restricting and grows a little more to match her height curve from when she was 9,10,11. Right now she is 13.5 yrs old, 5'4''. 

  We are scheduled to leave tomorrow morning for the out of state residential place. I think we're just going to go for it. Anybody praying out there, please pray that this helps and doesn't set her back. We're only afraid that it will set her back in that she has come around to being so much more pleasant to be around. We feel like we've mostly gotten our d back, except for the fact that she doesn't want to feed herself enough to gain any weight. :0(

I suppose one more chance to promise to gain weight at home as per doctors instructions? Probably won't be agreed to...

Thanks,

hopelove

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Hopelove 
toothfairy

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Reply with quote  #7 
Hi there, good luck tomorrow, I hope it works out.Keep in touch.
Remember that even when she comes out she will need the same supervision and help at home for a long time, often years.
Use this time to re-charge your own batteries.

__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
Foodsupport_AUS

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Reply with quote  #8 
Best of luck with your trip for residential. 

It sounds like your D is has been stuck for sometime not able to eat enough to gain, and not losing weight either. It sounds as though her eating disorder remains very strong. Getting over the stuck point can be very difficult. Hopefully the unit she is going to can help her move forward.

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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  #9 
Dear hopelove,

I will keep you and your family in my prayers.

FWIW, I think you are doing the right thing.  The situation where everything in life is great except for eating is classic ED.  She is not well if she can't eat enough to keep herself healthy.  Her ED is happy because it is strong.  Weird, I know.

From what I can see you have several things going for you.  Your team sounds amazing.  They are insisting on appropriate weight gain, and that is so rare!  D is young.You have time to get that weight up and, most importantly, support her in keeping it up for years before she moves out.

Have a safe trip tomorrow.

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]
hopelove

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Reply with quote  #10 
Thank you everyone! We so appreciate your taking the time to reply. Thank you for prayers. We leave in a few hours. ...will keep you posted.

Sincerely,
Hopelove

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Hopelove 
JustFlippinEatItNZ

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Reply with quote  #11 
I reckon you're doing the right thing. You've tried the home thing for a long time now, with little movement. Time to try something new. 
Sometimes these things don't work the way you intend - with my d when we finally got her a placement she refused to stay and self-discharged, but then when she got home she started eating, after a year of being stalled - so it worked, just not how we'd expected! It isn't a straight road and there are no easy answers.
I hope the journey and checking in goes smoothly, and that it helps your d get her life back.

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17yo D, AN since Sept 2014. BMI 19.
Onward and upward - a gram at a time.
Torie

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Reply with quote  #12 
How is it going, hopelove?  Please stay in touch with us as this forum offers so much knowledge and support.  Since it is a marathon and not a sprint, it is a taxing journey.  All the best.  xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
hopelove

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Reply with quote  #13 
Hi everyone! So sorry for the delayed response. As you can imagine, it is quite taxing and all consuming when you travel/drive hundreds of miles from home, and check your child in to a new residential specialty hospital and have to figure out where you yourself are going to stay night after night, etc.

  Things have gone much better than my husband and I thought they would, so far. Of course our d is not happy and wants to come home, but thank goodness, she is eating there now. For the first week she restricted a lot, but still ate some. This was one hundred percent better than eating nothing and needing a feeding tube right away. After a week, she has started to try to earn her way out of there by eating 100% of what she is given. We pray she will continue and not give up.

-hopelove


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Hopelove 
iHateED

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Reply with quote  #14 
Good for you on getting to this point.  Right now, all that matters is that she is eating and gaining weight.  Don't worry about what she says she will do, like coming home, it's all talk right now.  She is there and she is safe.  My D did a few months in a PHP and IOP and driving her back and forth each day was so hard.  We were late almost every day because my D threatened she was not going almost every day and cried on the way there.   For this reason I think doing residential is a little easier than a day program.  Hang in there!

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