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

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ally2016
Oh what a rollercoaster; after 3 months in PHP "they" have decided that D has lost too much weight (which I was afraid of) and they had set her weight too low. The meal plan she sticks to like glue needs to be upgraded and D just CAN'T wrap her head around it. Recommending residential.

She was always at 90th percentile for weight, 75% for height. Is there any in between? I think her pediatrican and dietician were almost being too nice and allowed her to stay at a weight that was too low for her, because they didn't want to push her over. Does she HAVE to go all the way back to 90% to be healthy?? I'm so afraid of how she'd react to that.

AND I am heartbroken that after 3 months at PHP, they are deciding on residential NOW.

And I KNOW I should be able to do it at home, and I just don't think it would work for us. It might have in the beginning, but now, with her SO STUCK I don't think it's possible.

Any tips on telling her she's going? She thinks she going to step down to IOP and go back to school in 2 weeks.

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Psycho_Mom
Hi,

While I have not been in your situation, I DO have tips on telling ed something ed doesn't want to hear, having done it quite a few times:

1. Remember that your d is afflicted with an illness that impairs  her judgement, and that she NEEDS you to make decisions for her, no matter how extreme a reaction she has or how much it appears she doesn't like it.

2. Remember that extreme reactions ALWAYS, always, always, come down over time. And there are things you can do to help your d handle her distress (see: Tamar Chansky Freeing Your Child from Anxiety or DBT Distress Tolerance module).

3. But it does not help your d to try to AVOID her distress by not providing her the care she needs. Ie YOU ARE DOING THE RIGHT THING. 

4. Choose a calm (or relatively calm) time, with no food in sight.

5. Have a distraction (small nice activity) ready for after you tell her.

6. Explain the reasons for your decision, but do not give her any reason to think there is wiggle room in the decision (or else you will get a lot of bargaining and argument.) Stay calm and firm while also being compassionate.


As for setting weight range..."push her over" what? Is somebody afraid that if she's an ounce over the absolute minimum she'll be FAT? Yow, being five or ten pounds over the minimum required for health would be lovely!!!Don't listen to ed, don't collude with ed. 

"Does she HAVE to go all the way back to 90% to be healthy??"

When she's at the right weight her symptoms will lessen. Sometimes it's hard to know exactly what that weight is, but if you don't get there you'll never know. And she will never, ever be well. And obviously you haven't gotten there yet.
She needs to weigh what she needs to weigh.

"I'm so afraid of how she'd react to that."

I know. I do understand. 
But hey. Notice your fear. And remember that your d feels that fear a hundred fold. Be strong and face your fear, and require that she do what she could never do on her own.
(Or, if it seems that her knowing the goal weight will hurt her ability to eat, you don't have to tell her, and you can blind weigh. Right now, do whatever works best.)

"AND I am heartbroken that after 3 months at PHP, they are deciding on residential NOW."

Yeah, that sucks.
But it is also awesome. They made a mistake, they learned from it, they upped her weight goal. The higher the weight, the better chance she has at recovery.

best wishes,


D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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ally2016
Psycho-Mom, you are amazing, thank you for all of that.

Also, she just got her period for the first time in a YEAR.  She THINKS that means she's fine. She has NO CLUE about residential. Should getting her period mean relooking at that idea?

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Psycho_Mom
Hi again,

Menses are excellent, and a major indication of returning physical health. However, not the only indication, and often not an indication that weight is high enough for MENTAL health. Historic growth charts are better for that, and reduction of symptoms until they are absent is the best indication. Kartini website has good info on menses and target weight, and you can also search on this site. And your question would be a good thing to discuss with you health care providers (not with your d!)

My d at her sickest weighed 109, got her period back at 122, was wr at 138, now weighs 145. Some sufferers never lose their period, even at very low weight. 

best wishes,
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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deenl
Hi ally2016,

I really like these blog posts from the Kartini Clinic about setting weights too low. They have other posts about target weights and return of menses so it might be worth reading around their blog.

https://www.kartiniclinic.com/blog/post/appeasing-the-monster/

https://www.kartiniclinic.com/blog/post/determining-ideal-body-weight/

This illness sucks big time and any and all methods to get your kid well are valid. Home is great but only for some kids, for others professional help is better and everything in between or switching from one to the other. There is no 'right' way to support your daughter to health so no 'shoulds', please. We all do what our kids need, end of story.

StubbyUSA had a very poignant post just after I joined the forum which brought me to tears but showed me what I was fighting for and motivated me. I find his tag line runs though my head very often to give me courage. He says 'Parenting is not for cowards' It is one of my mantras and has helped me immensely.

Wishing you strength and courage and remember what you are fighting for; a life worth living (without ED) for your daughter.

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

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • 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.
  • We cannot control the wind but we can direct the sail.
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ooKoo
What Psycho-Mum said. 

Also the return of menses is a great start, but the professionals only take regard of three consecutive periods, 28 days apart (ie a regular cycle for 3 consecutive months) but as others have said, this isn't always an indicator that WR has been achieved.  It is a positive sign, but no real indicator.

I really do get how frightening it is having to give your D the news about IP.  The potential reactionis scary and I do remember being terrified of upsetting my D, in case it made things worse.  Here the pinch - actually things can't get much worse.  I wasted several weeks this year after my D relapsed, because I was scared of my D's reaction and also scared of doing/say the wrong thing.  Silly me, she was really quite poorly and I was dithering.  Luckily, I eventually sought help and treatment, and you know what, my D actually seemed relieved to finally have the help that she clearly needed.

Good luck, let us know how you get on. x
UK - South East

19 yo D

Dx AN Feb 2015 (Aged 15). Pre-existing low self-esteen and high anxiety. 

2015: 3 x medical hospital admissions. 1 month in IP which she self discharged from [eek].
2016: 3 x hospital admissions. 
2017: CAMHS CBT. WR, dropped out of 2 different colleges and started an apprenticeship.  Started having grand mal seizures and was diagnosed with epilepsy in Nov 2017. Sacked from job because of this.  Tribunal ensued.
2018 - doing a Psychology degree through Open University and working in retail to pay her way in life. Relapses with eating disorder in June 18 and Nov 18 😢. 

On particularly rough days when I am sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good. [Author Unknown]
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Torie
ally2016 wrote:
Does she HAVE to go all the way back to 90% to be healthy?? I'm so afraid of how she'd react to that.

 
It sounds like she does need to go back to 90%, at least. Sorry.

NO ONE wanted to restore my d to her previous weight, no one. Surely I didn't want to either. But after listing to the sage advice from the FEASTIE warriors, I insisted on pushing her through. And more. 

And you know what? She was much more accepting of her weight/size/self once she got to that higher weight. 

It makes no sense. 

Ed makes no sense. Ever.

AN breaks their brains. They can't think right, and they hate their size/shape/self. That's just ED, though. Once her brain is healed, she will be OK with her size/shape/self. Like most teen girls, she probably won't be THRILLED with her weight, but again, like most teen girls, it won't be the end ot the world, either.

Keep going. You will get your d back. xx

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

You have already received great advice, but I thought I would chime in and share our experience.

My d had tracked at 75th percentile her whole life, until anorexia set in. Even at her lowest weight she was just below a "healthy" weight per the arbitrary weight charts. Because of this and perhaps because of my own nonsensical ideas about weight before my d got sick, I begged her first treatment team to not make her get back to 75th percentile. My d spent a year in hell at 50th percentile.  She looked great, but was super sick.  It was not the right weight for HER! We never saw true brain healing until she got back to (or in fact above) that 75th percentile.  That was almost 3 years ago.  She has now settled in right about 75th percentile and seems to maintain her weight effortlessly. She is free from ED in every way.

As Torie says, my d also is way more accepting of her body at 75th percentile than she ever was at 50th percentile.  It makes no sense I know, but it is true. My d was suicidal at the thought of going a pound above 50th percentile, but now normal weight fluctuations above 75th percentile are no big deal to her. She doesn't even weigh herself.

I must admit that when I first came on this forum, I thought some of the parents were a little crazy and seemed obsessed with weight and making their kids gain too much! I have seen the evidence in my own d and now feel very strongly that is the only way out.  Are you familiar with the Minnesota Starvation Study.  it really helped me to read that study that showed similar proof of the need to restore to pre starvation weight.

As for dealing with your d's distress about gaining more and going residential, yes I get it.  My stomach does flips just thinking about it for you.  In DBT (a type of therapy that my d engaged in that was very helpful for ehr and for our whole family) there is a skill called coping ahead.  You could google DBT and cope ahead and some of the specific strategies will come up.  Basically, you want to practice in your head how it is going to go when you talk to your d and come up with a response.  I would then practice it in my head.  I would even come up with verbiage for responses to my d.  I would say them over and over again.  I may not have even believed they were true (things like "I know this is the only way out for you", etc.) It helped me when I realized that there was not really any way to minimize my d's distress AND get her well.  The only way out was through.

Enjoying my 23 year-old daughter's achievement of active recovery that was made possible by the resources and education I found on this forum.

Don't give up hope!
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mnmomUSA
You've gotten great advice.  Just to add my two cents.  My D always tracked at the sub 30th percentile for weight for her height.  We've had to bring her WELL above that (she's at the 50th percentile at the moment) to get her "state" right.  Her state NOW is loads better than it was even 10 pounds ago.  She is FAR more accepting of her current weight (which is over 135) than she was when her weight was 120 and told she needed to be 130....you'd have thought the world was ending.  Now, it's just "eh" and she gets on the scale and sees the weight with not so much as a whimper.  It's bizarre.  

You should also know that my D got her period back when she weighed just 96 pounds!  Obviously, 96 pounds wasn't anywhere CLOSE to her true WR weight.  I always say it's a "necessary, but not sufficient" indicator of health.
D, age 18, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)  D at college and doing great!
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Foodsupport_AUS
If you have a start date, then I think the kindest thing is to tell her as soon as is reasonable. Sit her down at a non anxious time and tell her what needs to happen. Be firm, clear and resolute. She is almost certainly going to be very upset, and the more firm you are about what needs to happen, and the calmer you can be, the sooner she is going to wrap her head around it. 

My daughter would always stop eating if she knew she was at risk of admission, she was always admitted for medical instability and would of course be more unstable as a result. If you think there is a risk of this sort of thing happen I would give her warning but would reduce this to a few days notice.
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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