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scaredmom

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Reply with quote  #1 
Hi all,

D is now WR for the last 2 months and still gaining. She is happier and there is less strife overall.

She is eating all that I give her with no or very little fuss. Still a few food challenges we need to overcome, but in the past few weeks she has tackled (easily) some difficult foods ( potato chips and Halloween candies).

So now I need to know what more I need to do. I keep feeding. It is the same schedule and high calories. I will not let that go. I don't feel she can really feed herself at this time. So I am still in charge.  We are trying to work on intuitive eating (like a sweet or two outside of the routines- so that she has "extra"). She sees the therapist every 2 weeks and pediatrician every two weeks, alternately.  I am not sure what comes next.
She has less anxiety overall and she seems like the happy, loving child she was pre-ED.
Any suggestion? I feel I am missing something that I need to work on.
Thanks for your expertise.

Torie

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Reply with quote  #2 
Wow - You and your d are doing great!!  Love reading about her progress.

One thing you could work on is s-l-o-w-l-y helping her choose and plate her food.  By slowly, I mean starting with something like pouring her own milk.  But the main thing is to keep up your guard.  Stay vigilant.  And keep up the good work! xx

-Torie

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

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Reply with quote  #3 
Great, great news! I would work on some really peripheral stuff. Like can she choose between sour cream flavor chips vs. salt and vinegar; or would she like strawberry or vanilla ice cream. The goal is to have her experience mild discomfort and then get through it. 
tina72

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Reply with quote  #4 
Hi scaredmom,
great news, congratulations! You are a fighter!
We (4 months in WR now) did it that way:
1) Give her back some decisions: What kind of joghurt taste. What kind of fruit. At the beginning offer two different things to choose.
2) Let her do something on her own: Put some cheese on a bread. Fill milk into a glass. Plating a whole plate is very difficult at the beginning, my d didn´t get that up to now.
3) Try to work on the rest of the fear food. Do the "pizza test".
Do that all very slowly, as Torie said. I found phase 2 was a 2 step forward 1 step backwards thing.
Intuitive eating and extras will take a long time. I don´t see that up to now. My d still has problems to choose the right amount. I try to ask her to plate for us sometimes now so she can learn what will be a good amount for me and than hopefully can mirror that.
Just wait. Time will heal it. You have nothing to win and much to lose. So waiting "too long" with this or that is not the problem, but "starting too early".
Tina72
iHateED

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Reply with quote  #5 
Great to read of your progress!  You've come a long way.  The above suggestions are great and another suggestion I have for you came from here years ago.  Put small foods such as m&m's or nuts out in small candy dishes (either just in the kitchen or around the house).   Let your D see that you and other members of your family can walk by and take a few without giving it a second thought.  The main goal is to normalize eating and to show your D it is very normal to eat something that just looks good! 

Keep up the good work [smile]
scaredmom

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Reply with quote  #6 
Thank you all
I will try these things. I will go slowly as you all suggested. I do not want to go backwards. She poured her own juice for supper last night. She was nervous, I could tell but she did it with me supporting her. I think she was so brave and I think she was proud of herself.
tina72

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Reply with quote  #7 
I can really imagine what that ment to her: pouring your own soup. Sure she was nervous, but great that you could support her and she did it. You can both be proud of yourself! It takes time and this are really baby steps but she will get more freedom with that. And now she is at a point where she might like that smell of freedom and you can use it to keep her on path.
I wish we all could have a little glimpse of how it is now in the dark times. I would never have believed this could happen again. Last year we had such a sad christmas and this year is totally different. So grateful that I found you all here. You saved my and my ds life.
Tina72
scaredmom

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Reply with quote  #8 
Oh Tina,
You help everyone here everyday. Your loving support and experience helps me and others to save our children's lives! I am so grateful to all on this forum and hope I, in time, can help others like you all have helped me!
It always gets me... what we do everyday, 24-7, the arduous task and how horrific it can be and yet we persevere... and it is the hope of the future a bright future for our children that propels us forward. How such a simple thing to others, that a plain old glass of juice, brings me to tears!
Love xxx
tina72

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Reply with quote  #9 
Hi scaredmom,
just saw your nice post, I just didn´t see it until now. Thank you for your nice words. My "experience" is very low compared to others but I get so much help here and I feel comforted by you all. You sure can help others here and you do right now by asking good questions and sharing the situation you are in right now. So many people new here or just lurking around can see what other families do and what their problems are and the most helpful: that we all are not alone in this f...ED world and that gave me the best support of all. I first thought I cannot do this and nobody knows anything about FBT in Germany and there is no help for us and my beloved d will die. Finding you all here gave me support and hope 24/7 and is a real help until now. Our situation is much much better than 10 months ago but every time she steps back a little or we discover new problems I´m not thinking any more "oh my god, how can I get that" but "let´s have a look into ATDT and see what the others say and suggest".
That changed my life, really, and I´m just trying to spend some time to help as far as I can because I cannot help with money at the moment.
Keep posting how you are doing, we are in the same situation (phase 2-3) and would like to share experiences with introducing fear food and getting her back to more freedom in life.
Tina72
toothfairy

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Reply with quote  #10 
Hi scaredmom,
Such good news!
This is worth a read x

http://www.aroundthedinnertable.org/post/stages-and-timelines-and-how-they-set-us-all-up-to-fail-7917698?highlight=stages+timelines&trail=25#gsc.tab=0

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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.
toothfairy

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Reply with quote  #11 
This is a good article too, it explains how this is a long term situation
https://www.kartiniclinic.com/blog/post/avoiding-negative-energy-balance/

__________________
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  #12 
https://uncexchanges.org/2014/12/01/negative-energy-balance-a-biological-trap-for-people-prone-to-anorexia-nervosa/amp/
__________________
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.
scaredmom

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Reply with quote  #13 
Thanks TF
These are great!
toothfairy

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Reply with quote  #14 
https://www.kartiniclinic.com/blog/post/relapse/?utm_source=mailchimp&utm_medium=paid&utm_campaign=relapse&mc_cid=d9b8bfdd02&mc_eid=04bbe38f90
__________________
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.
scaredmom

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Reply with quote  #15 

Ok I know she is doing well, and I am trying to really "finish" all the challenges (ie fear foods- I keep adding new foods every week and she does them, then I do them again a few days later). Now where I am a bit stuck is:
1) Do I keep pushing for a lot of weight gain? I have kept the nutrition up and she is 3 kg over first goal. I am too scared to decrease the intake at all as I will not let ED get a strong hold on her again. Is this the right thing to do?

2) I have let her pour her own juice at times. She does get anxious when I have suggested plating her own food, so I continue to do this. When do I know when she can do more? Do I just suggest and see what she says?

3) She is in grade 7 (12.5 yo)  and I know I cannot protect her from "weight and thinness talk" by others at school, so what do I say to her? I have said that "all bodies are beautiful" and that "we don't talk like that in our home". Any other suggestions? She had two friends over for sleep over last night and the two girls were talking about one girl at school that was so thin (I was freaking out inside!!) she could put her hands very tightly around her own waist!! I watched my D and she looked at me and shrugged. We talked a bit about how that was not acceptable and she agreed. These girls are new friend to my D this last two months and they really are good lovely girls, but they do not know about D and ED. 
She does NOT participate in health classes and the teacher always has to OK certain curriculum items with me first.

4) Please tell me that I will get better with my mood. I am so sad. Normal everyday things like Christmas shopping or going to movies etc... give me no pleasure. I look at others that are laughing and think "you do not know my awful story-how could they be so happy". How do you get through this for yourselves so that you can enjoy things again? What we have been through feels so "outside" that I can't relate to worrying about what to buy for gifts, what to wear etc... Some of the ordinary things seem so small with all we have been through. I have only one friend who really gets it. With other people I just say that everything is OK. I cannot talk to many about the horrific experience.

Toothfairy has bumped a thread on "stages" from mamabear, and I know that there is no real timeline and that is fine. We are so much better than before, but this part feels a bit harder as I don't really know what the next goals are.  Looking to learn from all of your experience.
XOXO

toothfairy

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Reply with quote  #16 
1 - We are into year 3 now , my kid got sick at 13 is now 16, in strong recovery....We have never decreased the calories...he has to have more than 4000 cals per day to stay in recovery, allow for growth etc....this is common..
2- Personally, there is no way I would allow my AN  kid ,2 months after WR age 12 plate their own food....not for a  VERY loooong time. This is a marathon . not a sprint.
3-The best thing that I did was tell the school, the friends and their parents, our neighbours,friends and family. I am told immediately if something is amiss at school or out with pal's, it has been a lifesaver. Everybody looks out for him. 
I would not entertain that fat talk from ANYBODY in my home. 
4- I was Christmas shopping in a beautiful street in our city on Friday. I had tears streaming down my face, I realised I had not been anywhere near this street (that I had frequented before ED ), since Christmas 2014... I could not even go to a movie, let alone enjoy it in the last few years. I did not do any Christmas cards or gifts outside my immediate family in my house for 2 years.I could not face it.
I am just getting slowly back into the groove now...
This is a terrible, terrible illness, nobody except us could understand. 
The answer is YES - It does get better, it will take time, be kind to yourself.
The next goals are to keep feeding and keep going. You will be chasing growth over the next few years.
Here is an extract from one of Dr Julie O'Toole's blogs from Kartini Clinic that I think is very important information.
 
"Parents in charge: anorexia nervosa is a brain disorder; one with high morbidity and mortality that quite simply must be brought under control in order for a child or young person to grow and develop normally. At Kartini Clinic we put the parents in charge of food until a child is old enough to begin planning for college -- and I do not mean at age 13. Parents are in charge of cooking family meals for our patients until about age 17 when the patient, if doing well, can shift focus to learning independent living skills. As I and others have written about extensively, this is a cultural shift for many modern parents who are often interested in divesting themselves of cooking for the family or sitting down to family meals as soon as they can.
 
It is a mistake, in our experience, to shift responsibility for their own food to a child or young person if they are not in good remission: both physical and psychological. Parents need to stay in charge until this important transition can be safely effected. And we strongly advise not below age 17, barring very unusual circumstances. After all, it is a privilege to cook for and eat with our families! We should all enjoy it while we can. Too soon our children will be grown and gone and you will be staring at an empty place."
Best Wishes 
TF

__________________
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.
scaredmom

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Reply with quote  #17 
Thanks TF,
This is so helpful. It will keep me on track. I guess I was hoping that all of a sudden things would be "Normal". [frown] I do agree she is too young to plate. So I will just hold off. Thanks again. Your videos are great too!!
XOXO
tina72

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Reply with quote  #18 
Hi sacredmom,
nobody can tell you how much you have to push her over target weight. As she is very young and still growing, I would not decrease the intake. She might grow a bit and wham! you are deep in there again.
Plating is difficult. Mine is not able too (17, and 5 months in WR) at the moment. There is no harm with waiting. You cannot make mistakes with waiting too long but with doing it too soon. Try to let her pour her juice or for example choose 2 cookies out of a bowl. That is enough at that stage. Like TF said, it is not necessary. She can get that later.
Weight and thinness talk: I am holding my breath every evening when we watch TV together and even in the funny soaps like "Two and a half men" or "Big bang theorie" there is thinness talk. You cannot avoid that. But in my own house as TF said I would not accept that. If that happens again and you hear that, I would say something like "we don´t talk this way in our house and this girl who is that thin is in a very dangerous situation and I don´t like that you talk about people who are not here, that is not nice."
Your mood will get better but that needs time. I too was so sad and I hated all the people with healthy kids on the playground near our house...
You will enjoy all that again, I´m sure. Take your time.
Tina72
tina72

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Reply with quote  #19 
How do we get to enjoy ordinary things again? How can we allow ourself to get pleasure from anything again?
I think that is one point: we think "How could I laugh and have fun when my little girl is suffering so much?" "How can I dare to think about having some sex when my little girl is in IP?" We must allow ourself to have fun again. We must allow ourself to get pleasure.

Try to think about your function in your family and for your d at the moment. You are her mirror and her rock. You should be her role model. If you think you are not allowed to have fun again how can she allow herself to live a normal and enjoyable life? She has gone through something really hard and threatening. She also has to learn to live a normal life again. If you do something nice to yourself and enjoy something, she sees that life after ED is possible.
I cannot imagine that there is nothing that could give you pleasure. You just have forgotten what that is and how to do it. You have a meal plan and an appointment plan in your house. Let´s have a nice-things-for-me-plan. Have an appointment with the bathroom and take a long bath. Have an appoitment with the hairdresser. I nearly cried when I first found time to get to the hairdresser after 6 months. Nobody would understand what that meant to me. If you show your d that life is good and worth fighting for, she can do that for herself, too. Life has to go on. And there will be happy times again, if you let them be.

I too miss the social contacts and I too have only one friend who understands what has happened to us. That is sad. But you have us. We have each other here and that is a great gift. We can come and vent and tell somebody who really knows all what we are sad about. So please come and vent if needed [wink]

Send you a huge hug from Germany,
Tina72
kazi67

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Reply with quote  #20 
Our GP gave our d control of food too early and things went pair shaped then and she is nearly 19
Specialised clinic confirmed this at assesment and gave us "control" over dinner
D had other 5 meals, this has now progressed to us generally discussing days eating "normally" withbus still in control of dinner
So my suggestion is for you to be in control for as long as you can
Socially my d had gone from isolating herself, being depressed and totally withdrawn, and with no will to live, to now inviting friends over and organising social outings [smile] [smile]
This is SO good to see!
My social life?? Non existent I'm Too busy cooking [frown]
But to see the improvement in my d, my social life can wait
I also struggled with seeing friends kids thriving, new jobs, travel, uni and my gorgeous d just "stuck" [frown]
I would say oh that's great, and be dying on the inside
But it does get better, there is hope!
Keep on feeding
Hope this helps
I know reading everyone else's posts has helped us SO much x
Torie

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Reply with quote  #21 
Quote:
Originally Posted by scaredmom
 3) She is in grade 7 (12.5 yo)  and I know I cannot protect her from "weight and thinness talk" by others at school, so what do I say to her? I have said that "all bodies are beautiful" and that "we don't talk like that in our home". Any other suggestions? 

I'm not sure if it made any difference, but I have pointed out to my d that it is really a shame that our society makes EVERYONE dissatisfied with our bodies.  Even models and movie stars.  No one is perfect so we need to learn to be content with what we are, in all kinds of different ways.

Quote:
Originally Posted by scaredmom
  4) Please tell me that I will get better with my mood. I am so sad.


It does get better.  Really.  And tina is right that you are a role model for your d (her most important role model, actually) so you need to keep doing the normal (and fun) things until they start feeling normal (and fun) again.

It's kinda like having a toddler.  It seems like forever to get done with the diaper stage, but in retrospect it wasn't really all that long.

You're doing great.  Keep swimming.  xx

-Torie


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

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Reply with quote  #22 
ScaredMom, can I point out that you are now more sad than scared (or so it seems)? You have done amazing things--fear foods introduced on a regular basis, your d seeming to get it that all that thin-talk is a bad thing, you are inching back to normal but it is hard to see in the moment.

It is totally normal that as the hellishness of refeeding recedes, a different kind of anxiety and sadness intensify. It is, in a strange way, harder to sloooooowly work back to normal eating patterns after being in the thick of COMPLETELY abnormal. You have been through hell, and kept going. No kidding that you don't feel celebratory but more like shell shock.

In some way the singleminded focus on weight gain makes us more intent, more directed, and there is no ambiguity. Once you consider even attempting to give your d any kind of autonomy at all, it's scary. With the teeny-tiny inching back to giving your d a tad more control, and the backslides that will happen, all the ambiguity is a different kind of exhaustion and fear. 

So yeah, you get to give yourself a pass on holiday joy this year. It's ok to be sad and shell shocked. It's also great to get EMDR or other therapy for yourself, plus medication (raising my hand). It will get better, really it will. Your d is in SUCH a great place--thanks to YOU. You have done a really, really hard thing, and continue to. Big hugs and a hankie!!
scaredmom

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Reply with quote  #23 
Tina, Kazi, Torie and EC_Mom,
Thank you for your advice.
Kazi,
thanks for telling me your story. I will be in control for a long time. Yes we are so busy cooking that there is no time for much else [smile]

Tina and Torie, Yes I am her role model (a sad one right now) I have been so stressed this past week( fighting with the bank, the school, work etc....) A lot on my plate so  I think it really got to me. I try to  get everyone out and doing things. I ensure D has nice things to do and she likes to have her friends over a lot. Last weekend she had two girls over for a sleepover and they said that I am the only parent that really feeds them ( I got a good chuckle out of that one!!).  Well after I read your replies, I have booked a spa treatments for me and both my D's this weekend! 


Tina, I do believe you are right. I have forgotten what I enjoy! I have a few books and love reading even if just half hour a day, so I will do that. Thank you! I can relate to your hairdresser story. A hot bath would be soooo nice. Great suggestion. The social isolation is hard and you are right - the people here really understand what we are going through and you are all my life line! I get so much support, information, kindness, understanding , courage and caring here. I wish I could tell you all in person how much you all mean to me!

EC_Mom
Yes Yes Yes I am so sad!!  After the refeeding there is a different anxiety. It is exactly as you say. Shell shocked- great word. I will look into EMDR and meds too
. Thank you for giving me permission to let this holiday season go a bit. The pressure of making it all perfect is too much right now. We have a few plans to look forward to but I purposely am keeping it calm this year. 

Thank you all for your replies. They keep me strong and focussed and less isolated and part of a wonderful community.
Big hugs to you all!

tina72

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Reply with quote  #24 
Yes! Spa treatment! Go for it!!!
TIna72
mjkz

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Reply with quote  #25 
scaredmom, I found the need to simplify things a lot during our struggle.   One year the Christmas tree never came down.  I just pushed it into the corner and covered it with a sheet.[cool]  My "normal" was so different than it was prior to ED and in some ways it was a relief!!  No more trying to make it perfect for everyone and killing myself in the process.  I think the whole process actually gave me the freedom to do things my own way and save my own sanity. 
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