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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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lorpat
Hello - so, things had been going really well.  Life seemed normal.  My daughter's weight sort of maintained at a weight that is probably normal for her and we started a program of "intuitive eating." But, sadly, she lost a lot of weight and the doctors and therapist and nutritionist were all (and still are) saying she needs to do this on her own.  But, it is clearly not working.  She is eating three meals and about 2 snacks a day - and sometimes it seems good - but it is clearly not enough to maintain her weight and her mood and her life are going better and she seems happier - so it is really hard to think about going back to controlling her food again.  This talk of control has come from the therapists...  so, I am just a) venting b) knowing what I need to do c) feeling like a fool because we have been here before d) knowing I need my "big girl pants" and just wanting some support.  There are two weeks of school left and I am so not wanting to ruin the end of what has been such a hard year for her.  she is not recovered, just that she is somewhat more normal than before and anyway - I know what I need to do.  I am just not wanting to go there again.....  part of me is doubting myself because the docs/therapists are telling me she "needs to be in control" and that this is a disorder of control.  I think there is something to that - and I have been going to al-anon (for family members of alcoholics - but they let me come since this is a lot like an addiction) and they are like "focus on yourself" - but she is my daughter and she is starting to evaporate again and I am just not sure what the right advice is anymore.  If we go back to magic plate type thing, when does she ever eat on her own again?  Am I just in denial - is this a forever problem???  UGH.  Sorry to be such a whiner.  I know that is what this sounds like - I am just so tired and I have other kids and I have work and I have my own health issues and it just gets to be too much at times and I am so sick of this.  thanks for letting me just state what I'm thinking and feeling.
One day at a time...

daughter diagnosed 8/15 when she was 16,
wr through maudesly method 1/16,
currently in potential first relapse
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mamabear
I know how tired you are of it all... I totally get it... And vent away...

But here is the hard truth: your daughter was diagnosed 9 months ago and " weight restored" 4/5 months ago. You are not even a year in. In my experience and opinion your daughter may have been rushed far too quickly into independent eating.

You are right - this is about control- the control the eating disorder has over her. She has an illness. She needs help and support and may for a long time. In my 5.5 years in this world honestly I can tell you that it just takes a long time. It can take years.

You have a couple more years with her at home. Now is your best shot. Now is when you have more leverage. She needs you to step in. Go back to making sure she is getting what she needs. Making sure her weight STAYS where it needs to be. Your team sounds like they don't get it. Maybe time to shake things up.
Persistent, consistent vigilance!
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kas_US
Feeling the same feelings. My biggest advice is go at it hard now...18 comes sooner than you think! You don't want to end up where we are now, I promise!
Weight restored/Phase II
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Colleen
it doesn't take forever, but it does take a long time. If mamabear's timeline is correct, she really is in early days...too early to manage eating on her own, as you have found out.  That doesn't mean that she'll NEVER eat on her own.  It takes a broken bone about 18 months to fully mend; a brain is far more complicated.  So it takes time.  Luckily, your d is young enough that you do have it!

I'm a little concerned that you are getting such Old School messages from your team.  First of all, that they were in such a rush to hand control back to your d, and that your d was allowed to lose a lot of weight.  They should have had you step in right away when the weight started to drop if they are practicing evidence-based treatment. It's hard on the brain (and recovery) to have this kind of yo-yo-ing with the weight.  Secondly, the comments about "this is a disorder of control."  That may be Old School speak for "this kid has so little control over her life that she uses food as the one thing she can control."  This is a really outdated and dangerous and WRONG paradigm.  If they mean that "this is a disorder of control" because there is one part of her brain that is overactive while the rest of her brain is in sleep mode, that's different--that's what the neuroscience indicates (see Stefan Erlich's work here.  In that case, the treatment involves someone else (you, probably) taking control until that part of her brain simmers down.

The great news is that you know what to do!!

Here are a pair of virtual gonads--use them unsparingly.

You can do this!  It won't be forever!  You are your d's best hope of a full recovery!  Go lorpat!!
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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lorpat
Thank you so much - need those virtual gonads.  I'm so tired and that was the boost (and laugh) I needed this morning.  All of you guys are so helpful.  It is hard to not have a team or the "official" people telling me these things too.  That would really help if I had that going on.  If the doctor thinks her weight is ok, it is hard to be alone against ED and a doctor and the nutritionist too.  Feeling a little outnumbered.  This site is such a blessing - thanks.
One day at a time...

daughter diagnosed 8/15 when she was 16,
wr through maudesly method 1/16,
currently in potential first relapse
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mnmomUSA
I agree with others about it being far too soon to expect fully independent eating.  Phase two is NOT a linear process.  You give back a little control, see how it goes, and retake the reins if there is weight loss...we adopted the "if you lose weight more than 1 week in a row, then we we are back in control" method.  We weigh weekly.  One week of a small loss is fine.  She gets one week to get things back under control.  Second week another loss?  Nope.  So sorry, we are back to determining and plating everything.  

If giving back a little control (one snack per day for example) goes well, let her control a second snack too....then a snack and a meal, and so on.  Phase two, literally, took us 18+ months.  A long time.  A long, frustrating time.

Even now, after declaring victory, we are still on the path.  She is in a great place mentally and physically, but we still weigh weekly to guard against any weight loss.  She knows to step up eating if she is below her target weight zone more than one week in a row.  She knows to ask for help if she can't do it alone.
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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Sammie
Hi Lorpat- I totally understand where you are coming from. You are not whining. This illness drags on and on and it takes a toll on the caregiver in so many ways. Just when you think things are better, you realize that they are not quite as good as you had thought. We are on the same timeline, I think. My D was WR in December and she is doing very well. But it took me a while to realize that she is doing well because I am still providing support and gradually giving her back control-- not because she is fully recovered. True recovery is so slow. She is eating both mechanically and intuitively. Three meals and three snacks-- because it is working, not because that is what she would choose to do. Just this week, she told me that she "doesn't want to be treated like a kid" -- which means that she wants me to stop asking if she had a snack. She also wants to get rid of her morning smoothie because she is "so tired of them". And "normal teens don't eat the way she does". Handing back control is so hard. Especially when she is doing well but I KNOW it is still early days in recovery (even though it feels like forever). I had to tell my D that she was not a "normal teen" (sorry) and she has a chronic illness. Much like a diabetic has to watch their diet and take meds, she needs to be vigilant about eating her meals and snacks because that is her medicine. She can never diet and she can never lose weight. Again, sorry, but the smoothie works, so we are not messing with it right now. FYI: we tried it for a few days and she was unable to eat enough other foods to make up the difference in calories for breakfast. It is hard to tell sometimes whether this is ED, or a typical teen wanting to be independent. Refeeding was pure hell for our family and I will do whatever I can to prevent a relapse. I cannot bear the thought of going down the RAN path again, even though I know that relapse is likely. My d just turned 17, so I also feel like I am running out of time before she leaves high school and moves on to university. I think for full recovery, they have to BELIEVE that this new way of eating is the right way. If they don't buy into the fact that eating enough and regularly works better than restriction, then true recovery will never take place. It sounds like your D is doing well and she may need a bit more support for now. I don't think these kids are choosing to be ill. I don't believe the idea that these kids have no control over anything in their lives so they try to control food. It is the ED that has powerful control over them right now and they are unable to make smart choices. Once they are well into the recovery process, I think they have more control over their choices. You may have to go with your gut instinct here and take back more control of meals -- against the health professionals' advice. Your d will hate it. But you know your d best and what works best for you.
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lorpat
You are all right.  I will go into a little more detail in case it prevents someone else from the same faulty thinking I was under.  My daughter had really bad GI issues in the middle of refeeding and she claimed that was the reason for restricting in the first place (which may be true).  We got a diagnosis of an intestinal infection and it was pretty bad actually.  So, I think I confused the issue a little by thinking that maybe it wasn't "REAL" anorexia. . . maybe it was just this infection.  She still has other new medical issues as well and she just also got tested for lyme disease - she has neurological abnomalities that occurred at the same time. 

What I am learning here though is that it doesn't matter what may have originally caused the problem, once you drop weight to a certain point, it messes up your ability to accurately judge hunger/full signals and your own sense of what is "too thin" or not.  I may never fully unravel what caused it or how it started - but I think we were thinking it was possibly medically/infection initiated - and therefore, once that infection cleared, she should be "all done" with that.  She also feels that way too - which doesn't help.  Our professional team thinks it is family dysfunction, I'm overcontrolling, and my daughter has serious mental issues (even though her whole life and just a year ago, she did not seem to have such serious mental issues).   So, confusion all around and I'm afraid I let that cloud my judgement about the reality that food is medicine and she simply needs more calories and weight - period.   And, she needs to maintain that weight for a really long time. Thanks for being here and for all of you understanding this.
One day at a time...

daughter diagnosed 8/15 when she was 16,
wr through maudesly method 1/16,
currently in potential first relapse
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EC_Mom
If the team thinks it is family dysfunction they are a BAD team. Can you get a new team?? It's BRAIN dysfunction, not family dysfunction. No wonder you feel confused and bad, they are telling you things that would make anyone feel that way. But they are WRONG.
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lorpat
So, the doctor just wrote to me that I need to not panic and control food because she is "nowhere near" in trouble.  But, she is 5'6" and weighs 117 pounds.  She weighed 115 last year at this time before she started restricting and she has grown an inch since then.  She has always been very thin and her bmi was always 19.5 ish since puberty and it is now like 19.1 or something.  But, I had her up to 130 at one point.  The doc thought I was feeding too much and concerned that weight was too high and she was very depressed at that weight -.  I feel she probably is naturally somewhere in between.  But, I think she was at her physically healthiest around 128 (which did seem too high for her - but she seemed more physically stable there).  So, not sure what to shoot for again - but it is clear that we allowed her to slowly lose ground here under the ideas of "natural weight," "intutitive eating" and "control"........

She is eating as much as my other kids and seems to eat as much as I eat and so that is confusing too - but I told her she likely just needs more because of the need to catch up from the past.  I think for her it is just hard when there are no other "experts" saying the same thing I am.....  Do you guys know of any articles or anything related to this issue that may be helpful for her to read just to give me some backup??  I have struggled to maintain a healthy relationship with her through this and we have one and I do want to encourage her more than "control" her - having some outside info. besides just me may help back me up?? 
One day at a time...

daughter diagnosed 8/15 when she was 16,
wr through maudesly method 1/16,
currently in potential first relapse
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Torie
Agree with EC_Mom - Grab your d and RUN! Head for the hills!

Seriously, it sounds like they're operating with way too outdated information. 

I'm sure that you know your d might have been gradually restricting for much longer than it appears at first blush. Have you/they reviewed her historical height/weight all the way back to birth? 117 pounds is not enough weight for most at 5'6".

At the very least, I urge you to get a second opinion. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Colleen
Hey lorpat, you might want to get a little more personalized with her target weight/BMI.  If you're using BMI, be aware that it's really flawed in general, but especially for children.  BMI numbers are really weird for growing kids, who have outsized heads and scrawny little bodies until they start to shoot up.

Can you get any of her weight/height records?  If you're in the US, you can get them from your ped, as they weigh and measure pretty much every visit.  You can plot them at mygrowthcharts.  Or you can hand draw them in on this CDC growth chart.  If you look at the BMI-for-age graph, you can see how BMI changes as the kid grows.  So if your d was healthy at BMI 19.5 at age 15, then it needs to be closer to 20 now.

Setting the target weight too low is the #1 mistake that professionals make.  Getting to the appropriate weight FOR HER is not a cure for ED usually--but it is the most important step.  Recovery can't really happen without it.

Also, most sufferers need a loooong time at elevated calorie levels post w/r (and I'd argue that your d may not be w/r yet even)--think at least 6 months before going back to a 'normal' level...maybe even longer.  It takes time for the metabolism to reset itself.

And this?

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It is hard to not have a team or the "official" people telling me these things too.  That would really help if I had that going on.  If the doctor thinks her weight is ok, it is hard to be alone against ED and a doctor and the nutritionist too.  Feeling a little outnumbered.  


I totally get that!  I would have paid big bucks to have our professionals back me up instead of 'giving their honest (uneducated) professional opinion'.  That landed me in Poopville as far as my d was concerned.  We had to fire our first team and find a doctor who could work WITH us instead of against us.  Have you asked your team if they are familiar with FBT (Family Based Therapy)?  Be sure to clarify that you are talking about a specific treatment protocol, and not 'family systems' therapy.  If they demur, you might want to look for people who are more up-to-date with ED research.


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Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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Psycho_Mom

Hi,

I have written about four responses to you regarding my opinion of your "team". Due to my massive and admirable restraint (and the very sensible censor function of this site), I deleted every one.


HMMMMPPPHHHHH!!!!


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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