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mamabear

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Reply with quote  #26 
Upping this again.
I keep seeing posts asking " how long" will this take etc...

A long time unfortunately.

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ed_newbie

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Reply with quote  #27 
Mamabear your timing is amazing. We are back in phase 1 again after just a few weeks of semi normal eating post WR.

Progress is non linear. The process is long and frustrating.

I'm learning how important self care is because the challenges along the way can be overwhelming. This is harder than I ever imagined.

But I'm a fighter and ED is going to be sorry he ever met me!

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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.
Torie

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Reply with quote  #28 
Quote:
Originally Posted by ed_newbie
But I'm a fighter and ED is going to be sorry he ever met me!


LOVE that!!! xx

-Torie

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Playball40

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Reply with quote  #29 
What an excellent post. 

Sometimes I think it is hard for the parents/caregivers to keep up.  For me, there are times I want to run away and hide as I'm so tired of preparing meals, thinking about calories, watching my daughter eat......it's time consuming and emotionally draining (especially when the results are so slow).  In everything that is trying, people need time outs - but then the guilt of realizing that my daughter doesn't get a time out.  She doesn't get a break just because she's tired or stressed often shakes me back in to reality.  But treating ourselves with compassion and forgiveness is important too and I truly think it helps in the long run.

My now 12 year old daughter (and she started showing symptoms somewhere between 9 and 10 but wasn't hospitalized until just after she turned 11) recently started eating lunch in the cafeteria.  I am not able to take off from work and eat with her (something it took me a long time to forgive myself for) so she ate with the nurse.  But the nurse didn't actually DO anything (like encourage her to eat) so we let her eat.  Some days she does great, others not so much.  This past week she brought her whole lunch home (she doesn't hide it or throw it away).  Her ED behavior and actions have increased and I can see the anxiety on her face.  I spot weighed her and she actually gained weight (I suspect she's grown so it may not be as good as we would like) BUT, on my way to school I saw the sign......  FSA testing, 6th grade, Week of April 11-15.  BOOM there it is.  EVERY YEAR AT THIS TIME.  The standardized testing sends my daughters anxiety into a frenzy, which sends her ED behaviors into a frenzy.  Next year, I'm opting her out on medical basis. 

I no longer think this will be just get her to a good weight and I no longer believe just a  "little behavior" is acceptable.  I am in this for the long haul and together, we will WIN. 

And posts like Mamabear's just help reinforce (and many others too....way too many to mention).  I hope that I will be able to be a help and inspiration to others at some point too.


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Caroline
mamabear

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Reply with quote  #30 
Upping this thread again as I see lots of " stage" based questions.
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mamabear

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Reply with quote  #31 
Time to up this post.

Don't get hung up on the " stage" thing.....

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sahmmy

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Reply with quote  #32 
Yep. Don't get falsely lulled into complacency by achieving WR.
Keep weighing every week.
Jump back in to increased support if/when the weight drops.
Keep feeding.

Been there, done that. 

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d=18, R-AN, Generalized Anxiety Disorder. Refed at home with information gathered from this forum and lots of books. Relapsed. Refed. Relapsed. Refed. 17 sessions with an excellent individual therapist. 19 sessions with unhelpful dietician. 3 sessions of DBT (didn't like it). Psychiatrist available if needed. Prozac - fail. Lexapro - fail. 5HTP - fail. Clorazepam/Klonopin = major improvement, only used when necessary. Genomind SLC6A4 short/short - not able to process SSRI's.
d=15, lost 14 lbs in 8 months, Ped [nono]diagnosed as a crystal on a hair in the ear canal
Francie

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Reply with quote  #33 
Good post,  mamabear!
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Francie

puma8

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Reply with quote  #34 
Wow! I love this post mamabear. So inspiring. I am going to read and re-read it in the days and months ahead. So much of what you say and how you have struggled resonates with me. Thank you xx
mamabear

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Reply with quote  #35 
Bumping for Spicer
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mamabear

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Reply with quote  #36 
Upping for Steve and missy
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meadow

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Reply with quote  #37 
Thank you mamabear...super-relevant for me too x
outdoor

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Reply with quote  #38 
Thanks you mamabear, this is great info for me. My d is in recovery, but yes, she still has many little un-normal things. Thanks remind me, I will need to address them.
mamabear

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Reply with quote  #39 
Quote:
Originally Posted by mamabear
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. 










Addendum- Now D is 16 years 8 months and every word of this is still true. We have not seen ANY ed behaviors now in several years.

Keep going! Never give up hope!

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AUSSIEedfamily

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Reply with quote  #40 
Dear mamabear,

Thanks for this post & so wonderful that your D is where she is today.

I can remember your situation & posts when I first joined this forum.

Well done to mamabear challenging ed & challenging the triangulation by the clinician!!!

mamabear ROCKS!!!!

Thanks for hanging around here when your D is doing so well!!

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mamabear

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Reply with quote  #41 
Upping for tdm13
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Playball40

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Reply with quote  #42 
I love this post and refer back to it often.  My now 13 yr old is just past year two (although we probably lost a good 6 months in the beginning due to bad advice/help).  She's still ill - it's there even with her compliant eating and 40+ lb weight gain.  Her anxiety has taken an uptick lately - seems to be school related.  But at the doctor, YUP, a five lb loss.  She admitted not eating at school (and the nurse even had to go look for her as she was hiding out during lunch).  She, like her twin brother and 14 year old sister, enjoy sleeping in on the weekends.  Well guess what, it was costing me a full meal and snack every weekend (and school holiday) letter her do it.  I feel for her, but if I had to wake her for insulin, I would.  She's come SO far, it's like night and day.  But she still has a ways to go sadly.  It's so hard and I'm so sick of it.....went from loving cooking and meal times to resenting the heck out of it - and I admit I rely on fast food way too much.   So, the things that are better -

1.  She is no longer a vegetarian
2.  She has gained 40 lbs and got her period
3.  She will eat a muffin or cookie(s) even without prompting
4.  She eats what I give her without fuss (occasional roll of the eyes but that's it).

Things I still see that are ED -

1.  Still wants to look at labels (I often see her trying not to and can only imagine what's going on in her head)
2.  Won't eat if I don't feed her - she will ALWAYS wait for me (it's annoying because Dad won't help in this department)
3.  Will not do shakes - no way no how.  Even home made ones - big fear food
4.  Anxiety and occasional cutting
5.  Hates the idea of getting taller - she is 1/2 inch from her sister now and it bugs the heck out of her.  She likes being the youngest AND the smallest.

I don't know if anyone else sees these behaviors in their child, but figured I would share just in case. 

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Caroline
Torie

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Reply with quote  #43 
Hi Caroline - I don't know if you are already doing this or not, but some have had good luck presenting ED-kid with breakfast by waking them up with meal in hand "Eat this, and then you can go back to sleep."

Sucks that it takes so long to grind this vile illness into the ground, but you're making great progress!  Keep up the good work.  xx

-Torie

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mamabear

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Reply with quote  #44 
Upped for Hopeful 2017
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toothfairy

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Reply with quote  #45 
Bump
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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.
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