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rose08

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Reply with quote  #1 
We are seeing a definate improvement in my D's (12) mood / behavior along with steady weight gain. Compared to a few weeks ago (dangerous behavior, fighting every mouthful, etc) it's like we almost have her back with us. She is laughing, interacting with family members, wanting to go out and see friends.... It's almost too good to be true! She is on a very low dose of risperidol, the minimum, so I'm not sure if credit can be given to this?? We are 4 months in from diagnosis with solid refeeding happening from day 1 and about 3kgs from WR.... is this what happens the closer we get?? I feel like I need to be on guard, but her weight is climbing.... what should I be looking out for now? I don't want to be complacent as I know how this illness can shape change! But the peace in our home is a real respite after a hellish few months.
EC_Mom

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Reply with quote  #2 
Rose, congratulations and well done on all the progress! It is thanks to your consistent, firm, compassionate refeeding (and maybe the medicine) that your daughter is returning to you.

What to watch out for? My two cents:

1. Extinction burst: Sometimes as kids get close to WR the awful behaviors return with a vengeance. Remain firm, compassionate and consistent.
2. WR--higher than you think: Many (maybe even all) of us who have gotten our kids back from this horrible illness have ended up with weights far higher than any professional had considered WR. Just because some doctor says you are WR, don't necessarily stop pushing for more. Kids who recover seem to do better when they are MORE than "WR".
3. Enjoy the respite and get rest and recharge as much as you possibly can; in case there is some harder patches ahead, you need as much energy as you can get. 

But you have gained HOPE with all of this improvement, and it's wonderful for everyone out there in the refeeding trenches to see your story of improvement.
OneToughMomma

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Reply with quote  #3 
Dear rose08,

In my opinion, this positive mood could be one of two things.

GOOD--She's responding well to the increased nutrition, at least right now.  When my d was younger she was like that.  As she got towards WR her mood went up and she was 'cured' relatively easily, without an extinction burst.

BAD-- She's found a new way of restricting or compensating. So she might be ditching, purging, exercising, etc.  Sometimes this relieves the anxiety of weight gain so that they appear calmer.

So, my question would be, 'Is she continuing to gain?'  If so, then, like EC_Mom says, enjoy having your girl back and keep doing what you are doing.

Either way, I am here to say from many years of experience, please don't let your guard down.  Enjoy the respite and take a deep breath, but remember that a girl that age will need to gain weight steadily for the next decade.  She has to fuel puberty, growth and maturity.

Our d went through about 10 years of growth, illness, gain, wellness, growth, illness.... In retrospect we didn't understand that she needed constant support and monitoring for years. It sounds grim, but steady habits and routines would have been so much better than lurching from one medical crises to another.

You're doing great.  Stay the course.

xoOTM


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D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
ed_newbie

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Reply with quote  #4 
Had a very similar experience with my d. After several months of refeeding her personality returned, more smiles, etc. These are very good signs, but you can't let your guard down for a minute because you have no idea what might trigger the urge to restrict again.

Keep going - you're doing great!

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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.
rose08

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Reply with quote  #5 
Hi OneToughMomma, EdNewbie and EC-Mom
I feel like I have hawk eyes at the moment, terrible, but I keep waiting for something to happen to burst the bubble. Sometimes I feel like I might have a small dose a post traumatic stress syndrome from the beginning stages of this thing, does it ever leave you? Our family really needed a break, we had got to the point where her sibling was so traumatized and my H and I were living like stunned strangers in the same home... I am so aware that this is super early in this illness and we have a long road ahead of us, with meals and snacks coming as if on a conveyor belt in our home.  In the beginning this made me bone weary, but now its sort-of our "new normal" I guess. 

My biggest worry right now is her doctor and the issue of "target weight" - right at the beginning before she was blind weighed a number was mentioned that I knew even then as a complete novice, was too low. It placed her on about the 15th percentile, and even though we didn't have a real recent baseline to work with, I am certain she was closer to the 50th judging from her appearance prior to the illness and in comparison to her peers.  I sent her a message right after explaining how I wasn't happy with target weights being spoken about out loud (I am sure that weight was burnt into my daughters brain that moment) and we agreed to blind weigh from then on, but it gave me a clear idea that we weren't on the same page.  I have gone through a few posts here and copied down links to relevant articles which I am going to send to her as I know in every cell we need to keep going for a good few kg's more... and then keep on going to enable proper developmental growth for puberty to kick in again. 
Thank you for the words of support, this forum has been amazing and kept me sane in the crazy times and lifted my spirits when things were really bleak xx
EC_Mom

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Reply with quote  #6 
Your d's doctors should NOT be discussing weight in front of her. They can say vague things like "going in the right direction", or "doing fine", but should NEVER say in front of her "she has reached her target weight. If everyone is agreed that non-blind weighing is happening, they can say the number but with no evaluation attached.

Can you let them know this? If you don't have total buy-in or they fail, it's time to get a new doctor--or if she is doing well (once you are more certain this is not a matter of secret restricting making her happier) and the doctors agree there is no medical danger zone at hand, you could reduce the role of the doctor.

If the doctors are telling YOU (and not in front of your daughter) that she is done gaining and "has reached target weight", you can tell them directly that you will not rush to consider target achieved. Or, and this is what we did, you can nod and then keep doing what you are doing and think is best.

The doctors, apart from acute medical danger, are your consultants. You are in charge. Trust yourself--and NO ONE on here that I can think of has ever regretted refeeding past target weight.
meadow

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Reply with quote  #7 
Hi Rose

Congratulations on the progress so far!  What you've described sounds just like our experience.  We almost couldn't believe it when we started to get our old daughter (8) back.  I'm happy to say she has carried on recovering and it's only now (9 months from WR) that we realise how long she hadn't been herself for.  We went WAY above her previous weight for height, though.  I never weighed her before she started to get ill, but she was always petite and one of the slimmer girls in her group.  Now at about WFH 105 she is happy, confident, the OCD behaviours and anxieties have gone, and she shows no signs of having any body image issues at all.  I know things are likely to be a bit different in our situation because our D is still very much a child, but my point is that I would definitely be going for more kgs - as it sounds as though you plan to.

It's so nice when the pressure begins to ease a bit.  I'm really happy for you x
Torie

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Reply with quote  #8 
So happy for you!  Your d is really lucky to have you watching out for her and making sure she gets to a proper weight. I love reading posts from people who are having a good day / week / life.  xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
tina72

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Reply with quote  #9 
Hi rose,
congratulations from me too! I hope you can breathe a bit until the next step is coming. It is good that you are aware. Maybe you won the first round of that war! It can take a lot of time when round 2 starts. Maybe it never starts (I would really wish that!). But what I heard from other families was that round 2 starts when you expect it the least. Hawk eyes are necessary. But you will not go crazy about that. You will calm down with this by time. We all have post traumatic stress symtoms, I think. That seem to be in the package [frown]. In our family it is better now. We are aware, yes, but we have a little trust again in our d. But in our case it is easier because she never lied to us or hid food or manipulated anything. She is a really bad liar [biggrin].
Use this break to get power again. Have some nice family time. Have some nice couple time. Get your body ready for round 2. If it never happens - great. If it happens - o.k., you know what to do. Get your warm clothes on, ED! (This is a german proverb, I hope it works in english)
Tina72
Mamaroo

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Reply with quote  #10 
Hi Rose, this is great news 😁. Thanks for sharing!
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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11 in March 2017. Challenging fear foods and behaviours now.
mjkz

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Reply with quote  #11 
Rose, trust your gut and congrats. You have done such a great job getting her where she is.  As long as you are sure that purging in any form is not happening, enjoy the break but plan for the next bad spell.  You will get kick back as you get closer to target weight but blind weighing and not talking about it other than vaguely is great advice.

One thing to keep in mind is not to back off on the calories even when she does reach her target weight range (not target weight but weight range).  These kids need higher than "normal" calories for up to six months on average to maintain that target range and some kids need it a lot longer.  Because you are chasing growth and normal development, you will have to be very vigilant about keeping the calories at a higher level especially when you add back in things like more physical activity.
rose08

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Reply with quote  #12 
Thank you for all the messages of support and advice, I think our constant challenge is finding ways to keep the calories up. She gains and then plateaus, we up calories again and she gains until leveling out again... this week we are at a plateau again! Her diet is varied but excludes the "easy" calories like ice-cream, chocolate, cake, chips etc but she is comfortable with a variety of whole foods and so we work with those and try to get as inventive as possible, obviously adding as much cream, butter and canola oil as possible! Growing girl equals moving target, and then some. Re the purging, I have checked outside her window, under her bed in old toy boxes, looked in our bins and pretty much had my hawk eyes peeled after meals especially.... I know never to say never, but so far I am almost certain that she is not... the excersing is still there, more subtle but there. We have a no closed door rule now for her bedroom, which she hates but it's gone a long way in stomping it down. Inch by inch we will catch this thing xx
Foodsupport_AUS

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Reply with quote  #13 
You are doing an amazing job. Yes it can be hard to keep up with the need for increases. You need those calorie dense foods at the moment, otherwise they need to eat even more volume wise.  
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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
EC_Mom

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Reply with quote  #14 
Also excellent that you recognize the subtle ways that she is still in partial thrall to the ED. Sometime you will need to break the barriers to eating anything--ice cream, cake, etc. ED might get ugly again then, but as Colleen used to say (something like) "Everything ED dragged in, has to be dragged back out."
toothfairy

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Reply with quote  #15 
Hi there, 
The exercise sounds like a problem and can be a form of purging.
Personally I would not permit any exercise until at least a year into solid recovery...
If it is an issue for her to stop then you kind of have your answer that ED is running the show...

I stopped all excercise for my kid ,and in recovery he was very grateful that I dis, and when in solid recovery he could go back to PE etc, he chose not to.....here are a few articles...

http://tabithafarrar.com/2017/05/exercise-anorexia-case-cold-turkey/

http://tabithafarrar.com/2017/05/anorexia-exercise-2-lower-level-movement-trap/

https://www.kartiniclinic.com/blog/post/hard-news-about-exercise-and-recovery/

https://www.edinstitute.org/paper/2013/2/26/exercise-ii-insidious-activity

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

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Reply with quote  #16 
https://www.youtube.com/watch?annotation_id=annotation_3787605951&feature=iv&src_vid=4_hn934hXto&v=WykMa4A-U5Y
__________________
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.
rose08

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Reply with quote  #17 
Thanks Toothfairy, as always, great resources. A the moment it's 1 hour a week supervised school sport which was agreed on with us and her doctors pending on her wellness aka weight gain. In the very beginning there was exercise going on in her room which we have stopped with the open door rule, and pretty much supvised all the time - But, I am not naive enough to believe that its the end of the story just because we say so... constant vigilance seems to be the new normal I guess.... xx
toothfairy

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Reply with quote  #18 
You got this!
We are in strong recovery, into year 3 of this and vigilance is still a key part of the process.
It takes a long time.
You are doing just great!

__________________
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.
tdm13

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Reply with quote  #19 
Hi there,
Regarding exercising, we have not prevented it with our d (except the first 5 months ) as we saw that it was rather helping our daughter face the challenge of referring. Specifically she might dance in front of us after eating for a couple minutes and then stop: at this stage we find it ok to let the pressure down this way. Then she is exercising in a club with friends several hours a week which is important for her social integration + well being (she has been in this club for 8years). What seems important to me is that we compensate with extra calories when she does sport, + we have and will prevent her to go to practice if meals don t go well + we are careful that she is not compensating this way.

Regarding (over) target weight, we are struggling maintaining her weight oscillating above her historical BMI (we know it)
as she is growing a lot (1cm per month) and rather oscillates below that value. Although she eats well at home with us, she is struggling to do it on her own when we are not there and keeps many ED thoughts (i am fat, i don t want to maintain my BMI,...). I want to talk about that with our therapist as it is seems not important to them as long as she is in a healthy BMI range (whatever it means?). Many parents here share their good experience with higher target weight: is there any evidence based data behind that to show my therapist? Did some parents saw their children get better by simply sticking close to historical BMI?
Cheers


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tdm13
___________________________.
parents of 11 yrs d who started to restrict food Aug2015, diagnosed as AN. Hospital resident mid-Dec to mid-Apr2016 under traditional treatment (isolation+weight contract). Plain failure made us  switched successfully to FBT at home. WR in Aug 2016. Pursuing on growth & bmi percentile in Jun2017
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