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mamabear

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Reply with quote  #1 
Hello all of you warrior people.

I have noticed the past few days that there are a lot of posts here asking about the time frame of the "stages" and of recovery in general. There are people asking if more time is the answer and others who say time is not helping. So I have been thinking about all of this and wanted to just give my 2 cents after 5 years of this and a daughter who is now in a very solid recovery from AN. She is now approaching 16 and was 10.5 when diagnosed. 

Time: This takes a LONG TIME. WAY longer than any of us initially anticipated or wanted. You read the books and they talk about the "3 stages" and give these timelines . IT IS UNREALISTIC AND NOT TRULY HOW ANY OF THIS WORKS. It does a grave disservice to everyone battling this. It sets us up to feel like failures. It sets our loved ones up TO FAIL. Why do you think that treatment centers are viewed as having "revolving doors" with people there for 4th admissions? In my opinion and experience, it is because of these artificial timelines and stages. It took us 3 years to get back to my daughter being able to eat independently and intuitively. 3 years of consistent, persistent, vigilance. That has become my mantra. 

Our loved ones will go in and out of the different stages many many times. We start to let out the rope and bit and allow a few choices. Allow them to plate dinner. Allow them to pick a snack. Allow them to state their preferences. Allow them to eat on their own at school. Allow them to eat at a party and out with friends etc. We see how it goes. Sometimes they pass with flying colors and many times they don't. That is where the "feedback not failure" mantra comes into play. We had to step back in and eat lunch with my daughter at least 5 times over the course of the first 2.5 school years during her battle. She would say "I am ready" and we would assess and give it a shot, weight would be lost, food would be found or we would find out it was thrown….and back to eating at school with her we went. It is the nature of the beast.

Weight restoration: getting back to a good weight is the first step. It is critical for sure- but it is just the first step. The important part is that the weight is STABILIZED and remains there and creeping up up up with growing kids and with age. I think that pretty much everyone has fallen victim in the beginning to thinking that the ED will be "cured" once our kid is back to a good weight. We all know that this is completely false.  

So no- time and weight restoration are not the only factors. The other factors involve facing the beast head on. 

Challenging ED behaviors:

Another huge piece to the puzzle is challenging ed behaviors. These behaviors are very daunting and intimidating. For example: Fear foods. Sometimes people are in situations where attacking fear foods feels detrimental to weight gain and progress. In those situations people still can attain weight gain and weight restoration without hitting the fear foods, but sooner or later they MUST be attacked. We chose to "rip the bandaid off" from the beginning with fear foods, but I realize not everyone feels the same way and is in different situations. BUT to get to a FULL recovery- fear foods must become a thing of the past. This means exposure. This means requiring that fear foods are eaten. This means that if your kid is 1.5 years in and "stuck" then the next step is attacking whatever ED behaviors and rules still exist. And it sucks- because it pretty much means that the loved one's ED will fight back again and we are all tired and exhausted. Or let's say the ed person has gained weight and is doing relatively well over all but HAS to run every day or do some sort of work out. Again- that is ED behavior that needs to be tackled. This means saying NO. We have to weed out what is disordered. 

All of this is way easier in the beginning when our loved ones are super physically ill. It becomes much more foggy and difficult to figure it out when they have gained a bunch of weight and are back to some normalcy in their lives. From the outside others may look at our kids and say "They look great, are back in school, have friends, boyfriends" etc. so that must be "good enough". We all know the truth. Looks can be deceiving. It is much harder to fight the ED beast in some ways when your ED kid is saying "Oh my God, I am fine. I am at a good weight. I can run every day. It is healthy. I can't just sit around. You are overreacting." or "Why does it matter if I never eat pizza again in my entire life? I am eating enough to stay at a good weight. Leave me alone." But we know in our guts that it is NOT normal to obsess over exercise. They need to be ok with missing a day or a weekend or even not exercising at all for a week say on a vacation. It is not normal to never eat a slice of pizza or a piece of cake at a party or an ice cream cone on a hot summer day. If your loved one hated pizza their whole life pre-ed that is one thing…..but most often not the case. It is hard to tackle these behaviors when there may be a very large part of our kids that have "come back to us" If you have waited a year to get a real hug and a real "I love you"- it is terrifying to tackle behaviors because we feel like we will "lose" them again. 

A lot of my daughters OCD behaviors and exercise compulsion etc did dissipate with weight and time BUT we also worked HARD at extinguishing behaviors. For example: She had to touch heating vents with her big toe a number of times every time she went by one. So when we would walk through our house I would put myself between her and the vents. She would try to dodge around me or run back to do it and I would say "Nope. We are not going to do that. That is not normal. Normal people do not touch heating vents. Now breathe with me. Let's go watch tv, play a game, pet the cat, paint…etc."The anxiety would peak and then after repetition of this scene, she realized that the world was not going to end and she was not going to die or blow up if she did not touch the vents. She had many many many behaviors like this and each one we had to tackle. Each one we had to intervene. If a muffin was on the plate and she started to tear it all apart, then a new one was put on the plate, If she did it again then a new one was put on the plate. And repeat. Bottom line: we are stronger than ED. We can outlast ED. We can be as relentless if not more relentless than ED. 

Kicking the can, so to speak means just that. The longer we wait to tackle all ED behaviors the harder it is to break them. And believe me- I know how HARD it is to push when things are finally calmer. A few months ago after more than 2 years of full independent eating and normalcy my D was starting to kind of pick apart her food. It made my H and my hair stand up on our necks. I DID NOT WANT TO DEAL WITH IT. I was terrified. All of the past came rushing back and I was convinced that either I was overreacting or this was going to be just the tip of the iceberg. It was neither. We talked to her, she turned her back sitting in her room ( like a stubborn 15 year old) , but she listened. The next day she ate normally and has again ever since…because she is far enough down the recovery path now that she can reverse the behavior on her own. So this is a perfect example of how ridiculous it is to expect that someone who is only 6 months in, 1 year in, 18 months in (again we are ALL different) can just "eat" or can just "stop" a behavior without our support and intervention when needed. 

I hope this makes sense. I guess I just wanted to let all of you out there know that you and your loved one are on your own unique time line. It will be different for everyone….but I guarantee it will take longer and take a lot more than any book you will ever read will lay out. I am not saying this to be negative or pessimistic- rather to alleviate the pressure on you from professionals who may be pushing too hard in the beginning and then not hard enough at a later date. I once had an argument with a very well known psychiatrist about her triangulation with my daughter's ED. She had talked openly in front of my daughter about things that only gave my daughters ed ammunition against me. I told her I was unhappy and felt undermined and she said (with massive sass) "Well you know that in true Maudsley there in nothing that is not talked about with the child." I looked at her and said "Well we are doing the Mamabear method." (I actually said my last name). That was literally my Ah-ha moment. The moment that I realized I was the captain of this ship. 

So keep going and follow your own gut and intuition. It is perfectly ok to "question authority". It is perfectly ok to ask questions and to offer up your own ideas. The best team is one that listens to YOU and also that pushes you when you need pushing. The best professionals "get the get it" that the stages and the timeline are a general guide- not something chiseled in stone. They are the ones who realize that people go in and out of the stages of grief  just like ED people go in and out of the stages of recovery. Not a straight line. No black and white. No one size fits all.

Love to you all. 









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Torie

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Reply with quote  #2 
Great post, mamabear! Thanks.

I'm heartened by your 3-year experience. We're two years in, and all is almost well Ed-wise, but I can just sense "him" lurking slightly below the surface. Sometimes I see the Ed-look in her eyes when she's eating so I'm pretty sure she's still being beat up. The progress is s-o-o-o-o slow! So it's encouraging to read that a 3-year timeline is not surprising.

I agree that the stages idea is for the birds.

One foot in front of the other, one step at a time, keeping on keeping on. Where are we right now? One day past yesterday.

So tired of this.

Sigh. xx

-Torie

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skechers

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Reply with quote  #3 
Very well said Mamabear. I think one thing to remember when we feel like everything is taking so long is that things do gradually get better. It's not like being stuck at the very horrible beginning. Progress can be very slow but at least you can look back and see how far you've come even if you still have a ways to go.
NELLY_UK

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Reply with quote  #4 
And as a mum of a bulimic i can say WR is nothing as my d has never been severely underweight. She binges and purges twice a day nearly every day. There are no stages to this, just her and ed growing older together.
I am five years in and not much further forward. Stage WTF!

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
hopefulyetscared

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Reply with quote  #5 
Thank you for such in-depth advice. I truly value the things I read on this site. It has been more helpful than anything I have read or heard from the numerous health care professionals who have beeb "helping" us.

I am still struggling what, if anything, can be done to assist the recovery of the mental issue at the heart of the ED, which is the fear of eating. Is it necessary for my D to talk about the ED and why she fears food in order to get better?

I guess I'm asking is therapy necessary? She does see a therapist but I'm not sure how much of this she is getting out of it. I've looked around to find other therapists in my city but I haven't found anyone else. 

My D will not talk about her ED with me. I'm just concerned that she needs to address the ED with someone who can help her in order to heal. Am I wrong?
ed_newbie

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Reply with quote  #6 
Thanks for sharing this mamabear.  

I'm only a couple months into this and I guess you could say I'm pretty much doing my own method based on the information on this forum plus the books I've read and internet research I continue to do on my own.  

There are no FBT trained therapists accepting new patients as young as my d close by.  My d has recently started to see a non-FBT therapist to help with anxiety which existed before her ed set in.  

So instead of "true" FBT therapy I rely on my d's nutritionist who has some training in FBT. I guess you could say she is doing some version of FBT-based nutritional counseling.  There is no talk of phases or timelines as she stresses to us that it is normal for weight to increase throughout her teens and into her 20's because her body is growing.  The most important thing aside from weight restoration and continued weight gain during this growth period is to work on changing her ed behaviors and thoughts.  However long that takes.  I really like her approach and the way she explains these ideas to my d. There are no "goals" or lofty expectations set for her at these sessions.  No timelines or deadlines to meet. If there were, I think her anxiety would be a whole lot worse than it already is!

My d asked me today on the ride to her nutritionist appointment how long she will need to see her nutritionist and her therapist.  My answer:  For however long you need help coping with your anxiety and for however long you need support with eating normally.  It could be months, years, or it could be forever - who knows?  

She smiled at this answer. I think she appreciates the support and guidance and encouragement she gets from these sessions. I know I certainly do.  It's what we all need. Not just today or tomorrow or next week or next year but for a lifetime.

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"Lineage, personality and environment may shape you, but they do not define your full potential."    Mollie Marti  

ed_newbie

14 yr old d diagnosed with AN late December 2015 at the age of 12 after a 23 lb weight loss during prior 3 months. Started FBT/Maudsley at home on Christmas Eve with support from amazing local nutritionist specializing in ED and trained in FBT. WR Feb 2016 and now chasing growth and taking one meal at a time.
m1p1m5

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Reply with quote  #7 
Good and advice and thoughts, mamabear. I forget that my son has tackled and won over some aspects of ED. He is willing to try tactics to change behaviors. So, while it seems like this is a long process-and it is- there are also many mini-steps that show progress along the way. Maybe we can start fresh from each progress point.

I have two questions I need help with...1) how do I post a new question? And 2) has anyone had their child eat a bar of butter? I am not sure what behavior that comes under and what ED does with that.

Torie

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Reply with quote  #8 
Quote:
Originally Posted by hopefulyetscared
I am still struggling what, if anything, can be done to assist the recovery of the mental issue at the heart of the ED, which is the fear of eating. Is it necessary for my D to talk about the ED and why she fears food in order to get better?

I guess I'm asking is therapy necessary? She does see a therapist but I'm not sure how much of this she is getting out of it. I've looked around to find other therapists in my city but I haven't found anyone else. 

My D will not talk about her ED with me. I'm just concerned that she needs to address the ED with someone who can help her in order to heal. Am I wrong?


She fears eating because she has a brain-based disorder called anorexia. End of. Her brain isn't working right at the moment. I really wanted to understand it too, but we. just. can't. It's like asking why someone on the autistic spectrum processes things differently - they just do.

Feed your d. Make sure she gets plenty of extra fats. Monitor and make sure she doesn't start any compensatory behaviors. Once she has been wr for a while, if there are issues remaining, that is the time to tackle them.

You can do this. Keep swimming.

xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
berry75

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Reply with quote  #9 
Wow thanks for this amazing post.We are 7 months in and I feel emotionally drained. I have cried at least once every day.Its a combination of fear and worry.It is the first thing that comes into my mind when I open my eyes in the morning and the last thing I think about each night.I know this is a marathon and not a race but it is reassuring to hear it from someone who has been there for the long haul.
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Reply with quote  #10 
There is so much wisdom in your post, mamabear. Our experience was that "stages" were very nebulous, they took longer than expected, they bled into one another, they went backwards at time....

I could not agree more that addressing behaviors early is extremely important. The longer a behavior is tolerated, the more entrenched it becomes. The longer the battle goes on, the more exhausted the caregivers become making it less likely they will have the energy or the will to address it down the road.  

We were very fortunate that our battle with AN was not nearly as long or protracted as those fought by many others here. Our D's illness was relatively new when we discovered it and we got good advice early on about making appropriate treatment decisions. Even so, it was an excruciating, exhausting experience. Our experience wasn't nearly as extreme as that of many others, but mamabear's advice is exactly the advice I would give to anyone in the early stages of this battle.

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Daughter dx Dec 2012 at age 14 with AN and depression. Currently 18, fully WR, without any ED behaviors and managing life and college with minimal support.
K63

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Reply with quote  #11 
Hi mamabear, thanks for your post I find it very helpful we are 10 months post discharge from ip and fully supervising all meals with my almost 19 year old d . There is no way she is ready for phase 2 and I was beginning to go crazy about it as when you think phase one we are at it so long we need to be moving faster. In the last week we are challenging more behaviours and it's going well. Thanks post we don't have any support from FBT there is nothing like that available here.
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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
Psycho_Mom

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Reply with quote  #12 
Dear mamabear,

Hey. You know I have come on here every 3-4 months for the past 2 1/2 years and said Whattheheckthisistakingforever!! And you always respond and tell me that it takes as long as it takes, and it takes a long time, and that no my d is not particularly doofus-like, the illness is just tenacious.

Thank you.

Thank you so much, and I think I would like to meet you some day and give you a hug. 

I recently spoke with our d's t, who we haven't seen regularly for at least six months. I gave her an update, and she said she thought that d was taking a long time, longer than normal, to completely recover, and that sufferers with preexisting anxiety often took longer. Hmmmm. Are there studies? I should have asked her. Frankly, I don't think there are. How long does it take to recover? I don't think any study has accurately been able to quantify what is meant by "recovery." I know that by recovery I DON'T mean "stay alive for a year and then relapse," or "maintain a BMI of 18."  I mean ABSOLUTELY NO SYMPTOMS IN SIGHT AND NEVER EVER SEE THEM AGAIN. 

There are no studies that measure this, are there?

I recently posted on the Stories of Hope thread, and while I do think that my d is doing great and is almost there and that her story can give hope to others, I do also find that there are STILL things to work on, and still hidden pockets of ed residue left to eradicate.

1. My d simply hates to talk about ed, although she will do it (because I require it). She has never said the words "I have an ed" to anyone. As she becomes and adult, and will need to be able to tell people what she needs, I am communicating to her that being able to talk about ed and her health history is a requirement. She is resistant.

2. She very very rarely has seconds of anything. We have been talking about it, and I have off and on required it, but it still isn't a natural behavior for her. I am upping the priority of changing this behavior. Stay tuned.

3. Over the past holiday, when her schedule was very irregular, she lost five pounds in two weeks. When we discovered this she was surprised, said she hadn't intended to lose weight, understood that it wasn't a good thing, and admitted that, if she eats less than usual her appetite gets smaller very quickly. We talked about what to do about this, and decided that for the time being, if there was a day or a time that was "unstructured", she would need to plan out and think about her eating in advance, and be exra aware, and perhaps set a timer to remind herself to eat. Feedback, not failure, I guess, but...man, when are we gonna be past this?

3. If she has a VitaminWater to drink (this was a fear food) she still will drink exactly a tiny bit less than half of it. Every single time, a tiny bit less than half. She is very flexible about all other foods, taking variable portions, and I see no OCD in any of her other behaviors. All normal. But...Vitamin Water. Stupid, stupid, Vitamin Water. The calories are negligible, so I've let it go, but... I am more and more irritated by the exactly less than half of a bottle of Vitamin water. 

Anyway, I've gotten off topic perhaps. The point is, YES. IF you want to thoroughly get rid of ed, it may take Forever Plus Sixty. And I know you are all with me, in wanting to thoroughly get rid of ed!!

best wishes and good night,


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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.
30BT

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Reply with quote  #13 
It's funny- we have been doing stage 1 FBT for 18mths as my D keeps growing and her minimum weight keeps rising!
She does some things independently but mostly we are stuck in stage 1. I think the important thing is having a therapist who is flexible- we have done DBT in the middle, multi family therapy, and do not conform to the model, my d has had 3 admissions to hospital and during these has been unable to do any therapy at all. My husband and I have done FBT without my daughter.
Having flexibility around therapy is what has worked for us- we go every week but the type of therapy changes!

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Mum to 16yr old girl with AN. Fighting hard for recovery since she was 13.
NELLY_UK

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Reply with quote  #14 
I think i have been upstaged by bulimia sent back stage while ed has a party to which i have no stage pass.
Me, i am suffering stage fright and have been rendered useless.

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
alwaysvigilantCAN

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Reply with quote  #15 
I agree with mambear completely. We chased growth for years and years and went back to stage 1 more times than I can count. The positive spin of that is that my D knows that her dad and I are there-safety net ready. The net goes out slowly giving her more opportunity to succeed, but if need be the slack is pulled in and we are there. Exhausting, but with time and more time and nutrition and maturation of a well-nourished brain that has been consistently practising normal, non-ED behaviours it gets easier for everyone. 
The ED pathways can still show up with new challenges though-going away to school, entrance exams, illness, family issues, working, romances....  That's why parents cannot sit back and turn a blind eye. As your child gets further away from ED and the brain continues to mature you become more partners in keeping the ED vulnerability at bay. 

I remember thinking, get her to weight restoration and hallelujah we are almost DONE! [frown]  (despite what I read here).  It's a long long journey but stay the course.
And remember that in order for studies to be done on treatments, there needs to be protocols that need to  be followed. The stages of FBT give some structure.

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5 years in active recovery; With many, many days of full nutrition and closed loopholes, insight, life experiences and brain maturity we are slowly loosening the safety net
mamabear

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Reply with quote  #16 
Interesting that you said the part about needing protocol for structure for studies.

I was pondering what the " stats" really are and what the terms " remission" and " relapse" mean in those studies. One I just looked at said that 70 percent were in remission in a year and only 10 percent of those had " relapsed" within the following year using FBT. What are the definitions? We have had the discussion on here many times about " remission" verses " recovery" and what it all means. A year into FBT I would not have called my d nor pretty much the majority of anyone I knows kid in " remission". Again hitting a solid weight does not equal remission in my mind. And what do the studies define as a relapse? To me my kid never has " relapsed" but we had a zillion bumps...so what does it all mean?

I guess I would really love to pick the brains of them all. I'm sure they do hear from " us" how absurd the timelines set out are. Reading the studies and how the term " parent support" sounds just oh so simple is annoying to me.

Anyway- just babbling.

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rm53

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Reply with quote  #17 
It's so reassuring to know that everyone's progress is so different.  We've been at this since my D was 12.  Back and forth doing it ourselves, one hospitalization, therapists, nutritionists... and then about 6 weeks ago she asked for more help.  She's 17 now so it's been 5 years.  But she's in a residential program and I am seeing real progress.  I know it won't be over when she comes home, but I think she was ready to tackle it and that has made a huge difference.  Hang in there everyone.
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Reply with quote  #18 
Of course, I completely agree with mama bear!  The stages are very nebulous at best, and the timelines in manualized Maudsley are just completely unrealistic for most patients.

I also wanted to weigh in on "remission" and "relapse."  I'm pretty certain my D's treating team reported her in "remission" within the manualized Maudsley timeframes.  She was weight restored, eating everything required, etc.  However, while they may have called it "remission", she certainly was not "cured" of her ED!  She was not eating freely. She still worried about every little calorie that went into her body.  She never ate a bite more than we required her to eat.  Sigh.  She still had many entrenched ED behaviors (which I can see now ONLY in retrospect).  You've got to root out every last one of those suckers, systematically, and kill it.  Not just push it back into the closet.  But, you need to kill it.

Now, relapse.  We had a full on relapse in January where the ED returned in full awful force, and she ate virtually nothing for an entire week until we began to claw our way back out of the abyss.  It came out of absolutely nowhere!  Just bam.  One day, everything ok.  The next not.  Really.  We know now, having teased it out in therapy, that it was caused by us booking a family vacation where (a) she would have to fly (hates to fly, always has), and (b) she knew nothing about the restaurants she would have to eat in.  So, my friends, if (b) is an issue, she isn't recovered (or, I would argue, even in a good remission), despite being at a good, healthy weight for a long period of time.  

That all being said, I still do believe full recovery is possible.  I will keep working the system, bit by bit, until I can get her eating freely.  The good news about her recent relapse is that she was able to identify a trigger, AND do a lot of the work on her own to get herself out of the weight loss spiral she was in.  That was entirely different than the first go around.  :-)  



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D, age 17, 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.  :-)
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Reply with quote  #19 
Thank you for your post. It is very reassuring to read that it isn't just us and our d that is taking so long to move from 'stage 2' to 'stage 3'. I think you are bang on with what you say about stages and timelines not being helpful or grossly exaggerated in books.

I could have almost written your post myself. Our d is approaching 17 and was 12 when diagnosed. Whilst I know there are others on this forum with similar experiences to ours I can feel concerned that our d is more extreme that anyone else when I read things in books that say that stage 2 takes about a year and things like that.

In many ways she is doing well but still has quite a way to go to independence. I won't give up until we have tackled every last behaviour and you are right that this can be hard to face especially when things are 'comfortable' and you know you will incur ed wrath by pushing on. We are currently seeking some private help to try and help her tackle some of her anxieties. She hates talking to us about ed but has agreed that she will talk to someone else (an experienced ed therapist) This is a major break through in many ways for her.

Thanks again and maybe your post should be in the hall of fame? I think it would be helpful to read for anyone concerned about times lines or stages of recovery?

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Mum of recovering 16 year old daughter. 4 years into recovery.
mamabear

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Reply with quote  #20 
Bumped up for Berry 75.
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Psycho_Mom

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Reply with quote  #21 
Hi,

OK, since this is bumped, it may be useful to some if I update from my last post on this thread. To show that 1. recovery is a marathon, not a sprint, and 2. consistent, gentle pressure works (although its very, very trying on the patience of everyone involved.) 3. Whoever gives you a set timeline or mentions the word "stages" or "should" is talking about the wrong things and reading too many manuals. Recovery in 12 weeks in an orderly fashion is about as reasonable as saying, "OK it's Tuesday, you should grow an inch now."

The question that matters, and that will keep you sane, is: do you see progress?

Which are the most important things to fix? Start work on those first.


LAst post I said d was doing great, but there were some minor bullet points that bugged me. Here's where we are one month later:

1. D still hates talking about ed. I still plan very carefully what I need to talk with her about, because if I talk about ed more than one minute every couple of days, she thinks that's all I talk or care about!! BUT she has taken the major step of telling bf. Super proud of her.

2. I required her to take seconds once a day (even if it's just another inch of milk.) She did, and the behavior is becoming more natural/normal.

3. Don't know how she'll do when totally away from me for a few weeks, but I guess we'll find out--she's going on a three week trip next week. Cross your fingers.

4. I talked to her about the Vitamin water. She said that was a negligible thing to fuss about. She is probably right. But I have called her attention to the possible OCD remnant, so she now will be better able to decide what if anything to do about it.

And now that some of these items are resolving, I'm noticing more (smaller) things to work on....it's like a house renovation, and we're down to the punchlist.....

best wishes,


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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.
HateEDwithApassion

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Reply with quote  #22 
Psycho mom,

How do you compel your girl to take seconds or to do the things you've shared with us through your posts? Does she ever fight you on it, and if so, what do you do to compel her to eat? What leverage works with her? 

I ask because my D is WR, but is exhibiting some push-back to me when I ask her about her snacks, etc. I'm watching carefully - but to be honest, I'm not sure there's anything to take away from her that would encourage her to eat except maybe her phone, but that leads to isolation, depression. You get the circle of pain in the ass it causes... ha. I've also thought about incentivising her positively, but again, she doesn't care much about much. We can't use school or even extracurriculars. 

Hope I didn't hijack this, but wondered how you've been so successful and if your child is usually compliant or you have a strategy when she's not.  You really are amazing. Your child is so lucky. I'm not as strong as you are. Thanks!



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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
mamabear

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Reply with quote  #23 
One thing I did was to start putting out jars of snacks: M&Ms, peanuts, trail mix, bowls of fruit etc. I just had them all over the house and my family would walk by and grab a handful. We modeled normal eating. On occasion I would offer my D a jar. She would say " no thanks" and I would just say " Watch the rest of us. We grab a handful of candy it nuts. That's what normal people do. "

We also made it clear that the only way D was going to be able to eat more independently was if she could show us she could feed herself and follow her hunger cues. And we would be able to back off on amounts during meals if she could show us she could snack on her own and maintain her weight.

Also when she had friends over I would have snacks and remind her to watch how her friends ate and encourage her to eat like them. That normal teen girls eat pizza rolls at 10 pm.

It took A LONG time. It was a very long process. 3 years for any fully independent eating to occur.

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Persistent, consistent vigilance!
Psycho_Mom

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Reply with quote  #24 
Quote:
Originally Posted by HateEDwithApassion
Psycho mom,

How do you compel your girl to take seconds or to do the things you've shared with us through your posts? Does she ever fight you on it, and if so, what do you do to compel her to eat? What leverage works with her? 

I ask because my D is WR, but is exhibiting some push-back to me when I ask her about her snacks, etc. I'm watching carefully - but to be honest, I'm not sure there's anything to take away from her that would encourage her to eat except maybe her phone, but that leads to isolation, depression. You get the circle of pain in the ass it causes... ha. I've also thought about incentivising her positively, but again, she doesn't care much about much. We can't use school or even extracurriculars. 

Hope I didn't hijack this, but wondered how you've been so successful and if your child is usually compliant or you have a strategy when she's not.  You really are amazing. Your child is so lucky. I'm not as strong as you are. Thanks!



Hmmm, well, remember, my d has been wr for 2 1/2 years. Right after wr, my d was still impossible: resisting, arguing, negotiating, throwing pancakes, swearing etc. The ed fits very very gradually became more infrequent. I had to track them so I could see progress. First it was every day, six times a day, then a few meals would be fairly quiet, then we'd go a day without ed. For a long time there would be a fit every three days or so. Then five, then 7, then 12. 

I think after active resistance comes a sort of passive compliance, (punctuated by smaller fits). The sufferer knows you're gonna make him or her eat, so they just skip the fit, but they still need the implicit understanding that they are eating because you are requiring it. For at least a year after my d stopped activily resisting, she woulnd't eat a THING, not a sip not a crumb, unless I put it in front of her and it was understood that that was what she was SUPPOSED to eat. IT was SO maddening.

Anyway it's a long process. And please remember I don't post all the mess-ups I made, all the failures, all the things I said and did that didn't help d at all.

I guess I'd say, why are you asking about her snacks? Either she's in charge of them (because she's shown she can get herself a reasonable snack) or you are. IF she's having snacks unsupervised by you, then it doesn't help anything to ask about them afterwards. Either she had a good snack, in which case you don't need to ask about it, or she didn't, in which case you're putting her in a position of having to lie or admit she isn't able to be independent yet, and that would make anyone very grumpy.

If you're trying to teach her how to serve herself a snack, then again, don't ask questions. Just give her a chance to serve herself a snack, correct her gently if it's not big enough, and if there's pushback then say, "you can try again next time" and take over serving.

I don't think "encouragement" is an idea that works. Encouragement implies that you are hoping she'll eat but not expecting or requiring it. Encouragement implies that she's in charge, not you, and that you are OK with there maybe not being full nutrition. Expect full nutrition, teach and help her to do it herself in small doable steps that set her up for success, and be right there to help her if she can't yet feed herself enough. 

Does that make sense?

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.
PuddleduckNZ

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Reply with quote  #25 
Timelines should not be a thing.

We were told FBT would 'take 12mths'.

Yeah right.

We have had a relatively short illness and recovery compared to many others, but it has still been 2yrs since things getting bad and knowing something was wrong, weight loss and 18mths of treatment.

I am only recently confident to  say that things are ok, yes he is in recovery, that doesn't mean we can forget about it, I still have to remind him and be vigilant and occasionally ED pops up but it is nothing like before.

FBT (or any treatment) is for the long haul, closing potential ED gaps and loopholes for years to come I imagine.

__________________
Son 9yrs when he became unwell 2013, ED slide from April 2014, dx at 10yrs July 2014, 2 hospitalisations - dx so many times Behavioural Anorexia, EDNOS, ARFID. FBT from August 2014. Anxiety, Emetophobia. 12.5yrs old now! In recovery, gets better every day with constant vigilance, life returns.
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