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

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Lovemygirl

Hello all.  So my D was hospitalised in October 2019 for a week.  She was orthostatic, blood was all over the place.  It was a trying ordeal to get her there.  We had to call police and EMT and have her driven to ER.  


Back ground 

Prior to this she was a healthy weight , then gained a bunch of weight over puberty, prob felt badly as many of her peers were slim 12 - 14 year olds.  

We noticed that she was starting to skip breakfast at home, but we weren’t too worried as she ate lunch and then had a really good heavy snack when she came home and had dinner and ate throughout the evening after that. Fast forward to the summer when we spent a lot of time with her and then she would only really eat afternoon snack and dinner. We spoke with her at length about the proper nutrition, and caring for her body properly.  You guys know the drill ! 

so anyway she started high school in September, meals totally dropped off, we continued the nutrition talk but she really wasn’t eating anything at all. And plus ended up being hospitalised in October. All throughout this she refused to believe that she had a problem. After the week in the hospital, which she fully complied with every single meal she had gained a good amount of weight, and was WR around November / December which is fantastic work on her part.  
She has dipped up and down a few pounds and they want her holding steady   

The problems we are now facing : 

She wants more freedom to eat with friends ( she eats snack in nurses office and lunch in an alternative lunch room that has monitoring.) 
She wants to be able to pick what she eats 
She wants to do more exercise ( she’s currently doing Track 2 times a week, more for social aspect than getting fit to be honest ) 
She is isolating herself , locking herself in her room all the time. 
 

She’s not accepting that she has an ED   She said that she was doing something that felt ok at the time , was eating what made her feel good and went to far and got sick   She has thrown around the vegetarian/ vegan thoughts to us .... we shut them down by saying that’s not what a growing person needs  

She’s very angry , won’t talk with us unless pushed to do so.  This is not how she was prior.  She was very angry for 4 days in Hospital, but then came around.
She is just a seething bag of explosives...
this is not our daughter.  She was so carefree and happy go lucky. Full of corny jokes and fun last year.   

Here is the KICKER !!!

She has found herself a boyfriend who is 17 !!!😱 He’s a senior in HS.  We gathered this info from older D who told us.  My husband and I are not comfortable with this.  We would not be ok with her having any aged boyfriend.  AN D denies it.  

My Mama Bear signal is going OFF!  
I think that my D had low self esteem, bad body image , wanted to fit in , and lost weight in order to feel better about herself   She gained attention for it .... some negative, some
of her friends told her that she was AN back in September/ October and that pissed her off.  But I’m sure she had a lot of positive attention which felt good.  

So now onto yet another poor self image / bad choice.  This 17 year old.  


Please let me know your thoughts and strategies with coping with this.  I’m sorry it’s long and all over the place. 

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Torie
Hello, and welcome.  It sounds like you have done a good job getting your d into treatment and helping her regain the weight she needs.  Good progress!

I wonder how it was determined how much weight she needed.  Underestimating the amount of weight needed is the most common error made by clinicians.  Generally, when they are at a proper weight - for that particular individual, not based on some chart of averages - you will s-l-o-o-o-o-w-l-y see progress in mental state.

If you are starting to see more glimpses of your real girl, she probably just needs more time.  If you are not seeing gradual improvements, she may need more weight as well.

Please feel free to ask all the questions you like. xx

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

Thank you for your reply Torie.  

how it was explained to me that they calculated goal weight was via her birth weight and subsequent growth chart through her childhood years.   She is currently at around 112 lbs and about 4’11”.  I think her lowest in admission to hospital was 98lbs  

To be honest she has never been as angry as she is right now.  She’s just a seething bag of hate towards me , not so much her father.  She has zero relationship with her older sister and younger brother.  

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ValentinaGermania
It is totally normal that they are angry and hate you and that they isolate themselves as long as AN is powerful and they are not recovered. This disease troes to seperate the patient from the family. And it is perfect in that. You fight the disease so you are the perfect enemy at the moment, that is why you get the most anger. Here a punching bag helped to cope with that (for both of us!).

"The problems we are now facing : 

She wants more freedom to eat with friends ( she eats snack in nurses office and lunch in an alternative lunch room that has monitoring.) 
She wants to be able to pick what she eats 
She wants to do more exercise ( she’s currently doing Track 2 times a week, more for social aspect than getting fit to be honest ) 
She is isolating herself , locking herself in her room all the time."

At that state of recovery I would not allow any of that. It is too early.
If she says she wants to eat with friends and at the same time is isoating herself you can imagine that the only friend she wants to "eat" with is AN.
If she wants to eat with friends in reality she can invite those friends to come to your home at any time and you can serve them food 🙂.

She is not able to make good food decisions I suppose but you could give that a try and ask her to decide between 2 options. If you see AN decide for the lower caloric item it is too soon for that.

NO exercise in this state. She can do exercise when she is able to maintain her weight and when she is able to eat extra for this. My d goes to the dancing club once a week and she knows she has to eat double snack before she can leave. That works but we are in year 3 of recovery...

"She has found herself a boyfriend who is 17 !!!😱 He’s a senior in HS.  We gathered this info from older D who told us.  My husband and I are not comfortable with this.  We would not be ok with her having any aged boyfriend.  AN D denies it. "

I forgot how old is your d? Is that probably a legal problem?
If not, you might not be able to do something against it but you can control how often and where she meets him. Supervision is important in that state.
I personally would have a talk about that with her and although she might deny it think about taking her to a gynecologist for some contraceptiva (I hate that in AN recovery because it makes false periods but better than unexpected pregnancy in addition to AN).

"she had gained a good amount of weight, and was WR around November / December which is fantastic work on her part.  
She has dipped up and down a few pounds and they want her holding steady"

Normally if there is still ED behaviour left I personally would think that maybe she did not gain enough and was not really WR.
And it takes some months after WR until brain recovery starts. You are still VERY early days...
For a teenager that is not grown out there is no fix target weight and no maintainance. They must gain until their mid 20s.

Keep feeding. There is light at the end of the tunnel.
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Lovemygirl

Thank you Valentina.  All good points , and good things to bring up at clinic next week.  

I’m curious as to trying to figure out her “ goal weight “ myself    

Would you use a regular BMI chart ? I actually do t even have a scale in the house so I’d have to get a clinic weight.  

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Torie
You can plot her growth on mygrowthcharts.com and see if she is tracking on her historical line. 

I agree with ValentinaGermania that her meals need to be supervised and she is not ready to make her own meal choices.  We had to go really slowly with that - starting with letting her try to pour her own milk for example. xx

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

Thanks Torie.  

Just to clarify .... she is not making own meal choices , nor sitting with friends in regular cafeteria ... these are things that she wants to be in place for her    Her frustrations really , and her want for normalcy   

Our clinic puts one small positive in place for her at a time.  This first one was 2 days of Track that are monitored closely.  She doesn’t compete nor does she really do much of anything there.  

She’s feeling stifled and cornered.  I know this is normal.  I know this is hard.  Harder that she absolutely cannot stand me right now.  


Thanks for the growth chart link Torie.  

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Torie
[QUOTE username=Lovemygirl userid=6967110 postid=1310488161]

"Just to clarify .... she is not making own meal choices , nor sitting with friends in regular cafeteria ... these are things that she wants to be in place for her    Her frustrations really , and her want for normalcy "

Good that she wants normalcy.  That makes a good motivator.  

"Our clinic puts one small positive in place for her at a time.  This first one was 2 days of Track that are monitored closely.  She doesn’t compete nor does she really do much of anything there."

Still, TWO days is more than I would call "one small."    

"She’s feeling stifled and cornered.  I know this is normal.  I know this is hard.  Harder that she absolutely cannot stand me right now."  

Aww, this vile illness really sucks.  I hate ED more than I can say. xx

-Torie

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

I get what you’re saying Torie.  So maybe too fast too soon ? 

I’m also reading about WR and the goal weight that clinic have for her.  It just seems strange that she has this prolonged of a  negative attitude towards myself and the family , and is so close to a good healthy weight.  


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Foodsupport_AUS
Sorry that your D is continuing to struggle. You have done a great job getting her to where you have. These sort of things sound pretty normal for where she is in recovery. I would tend to agree with Torie that it is highly possible that she is not quite where she needs to be yet. It sounds like that she may not yet be close to her previous highest weight? If so her body is sending her signals that she still needs to gain weight, and it may be if she is maintaining weight that she is also suffering because her body needs more food physically. 

There is good evidence that weight suppression - being below a previous highest weight - is a risk factor for ED thoughts.

As for now, if she is truly weight restored the most important thing is that the nutrition is maintained. It is not unusual or our children to struggle to continue to nourish themselves for some time. Nor is it that unusual for them to deny they have a problem. To her she doesn't have a problem. She has thoughts that tell her to be a certain weight and appearance and she is just trying to fit in. I think it is even more common in those who have been ill at a higher weight. "Logically" to them they are just trying to fit in with everyone else in a diet and weight obsessed world. It is likely that a fear of further weight gain may be driving some of her behaviours and anger. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Enn
I have a few thoughts:
She started high school in Sept and so I guess she is about 14 years old?  She will need to keep gaining as a young woman. You also mentioned she had lost weight recently that should not happen. Transitions are stressful for our kids. High school is a big one for sure. As for eating with friends, I wonder if you could layer it, like having a few friends over or take the kids out for meal and see how she does. We did give our d a choice but very limited when well after WR plus ++ Kg, She knew what a good snack or meal was if she were to go out. But we did "practise" that many times before.
She may or may never accept she has ED and it is soooo early at this time. 

I think at about 14 years old some of the upset with the family could be considered normal. I think the best strategy is to  have consequences for unacceptable behaviours like you would with any other child and KEEP feeding her up. 
You have done so well with her! Great job!!

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Lovemygirl

Thank you all for your suggestions and support.  

Yes I do think that much of her anger may come from the usual teenaged emotions , that also get intensified by all the restrictions being placed upon her by us and the clinic.  

 

As far as the suggestion that weight should be restored to her prior weight before ED set in , I know that she was at an unhealthy weight for her height.  If I can guess it was approx around the 146/150 lbs mark.  Which for a 12 year old at around 4’4/5/6” is definitely on the heavier side.  What do you guys think about that ?  Is it recommended that she weight restore to her highest weight even if it was 2 years prior to ED? 

I am going to ask them at clinic what they think.  


The problem that I have with discipline unwanted behaviours is that normally I’m the kind of person that will give everyone an out.  I’m quick to see and feel the other persons side and emotions and I can take a lot of crap. This is not a positive attribute of my personality!  I do have to take away privileges , namely that dang phone.  Oh how I dislike them !  But anyway all great advice.  Thank you !   

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ValentinaGermania
Transition to phase 2 and more freedom is very slow and most professionals start that too early. It is a bumpy road and you need a lot of time to get them into a good state to be able to make good decision. It took more than a year here.

Goal weight:
Do you have any historical weight/growth chart from her?
If she was 75% percentile her whole life before she needs to go back there (and overshoot that maybe for some time).
If she was 50% that is the goal.
If she was 75% percentil for high and only 25% for weight she maybe was too low in weight her whole life before. Weight and high should normally be closer together.

BMI itself says nothing, it is just a number. Nobody would expect all women have size 38 in shoes.
Most parents here go for state, not weight. We refed my d up to a weight when we recognized changes in behaviour. That was here in fact 2 kg more than what the professionals thought was needed. If we would have kept her on that lower weight I am convinced we would deal with AN up to now.

You will recognize when she is on a good weight.
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
We can't really say how high your D's weight would need to go, but there have been some children who have been in larger bodies, who truly had to get to those larger bodies to recover. You may be interested to read this blog  There are some other links on the same site which talk about deciding where your D needs to go. Trying to maintain a weight that she is not meant to maintain though may help keep her trapped in her illness. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Torie
I agree with the others - there is no way to know in advance how much weight will be enough.  It's a good bet she will need to be at least a little heavier than the average for her height - when you get to the weight you think might be enough, you should start to see improvements in state after a few weeks or months.  Nothing drastic, but enough to know you are seeing small improvements.  That seems to be the only way to know for sure how much weight she needs. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Enn
This podcast is really good.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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atdt31_US
 Saw this post from you in another thread:

Here is our journey thus far.  

D was around 140 lbs Feb 2019 at regular dr check up.   We went on a trip April 2019 for 2 weeks.  She was sick with a heavy cold for much of the 2 weeks.  When we came back she was out of school for approx 5 days recovering.  She wasn’t eating as usual due to the illness   

This is when I suspect it started in full force.  Although I think she had negative body thoughts prior to that.  


We noticed a huge decline in food consumption over the summer   We talked about nutrition, and how important it is for her growing body to get everything that it needs in order to be healthy. She was really receptive to our talks, and would “try “ to eat more variety of foods, but then would just slip back.essentially she was not eating breakfast, not eating lunch, going a full day at school without any food, brewing a lot of green tea and water which in hindsight was definitely filling her up. She would come home from school and cut up to apples and stay in a big bowl of green beans and take them up to her room and eat them. Then for dinner she would have veggies and a small piece of chicken. That was it for the day. Mind you that was right at the end prior to hospitalisation. 

We met with ED clinic on a Tuesday which ENRAGED D so much that she  got out of car after appt when we were trying to get some food and drink and walked off.  Wouldn’t come back to the car and was running around vacant lots for an hour.  I called police.  
ED clinic said 2 refusals of food in 24 hrs bring her to ER.  So I had that set in my mind.  There was no way that home was a good place for my D.  


We got home and I prepped food for D , she came down and ripped it up and threw it across the room.  

Then made her usual veggie plate.  

Dinner was veggies and chicken , a tiny piece. 

Next morning D walked out of house in dark and rain , and I had to
call police to
bring her back.  My son was asleep so couldn’t leave him as he’s young.  

D locked me out of house and threw a massive tantrum , ripping curtains off wall and throwing stuff.  My son was in house with her and he tackled her and pushed her to the ground and let me in.  

I got son off to school and called EMT who took her to ER.  

She was admitted hours later ( take food and drink with you! They will give you nothing!) 
and was orthostatic and had crazy blood work. Her levels showed really high inflammation, they were thinking lupus or something auto immune too.  

D was fully compliant with all food in hospital and gained a really good amount of weight. But it took her 4 days to come around to talking to me and Dad.  She was seething with  anger.


Prior to ED she was just a fantastical sweet girl  who was just so wacky and fun.  Now she is so angry.  

 It she is still just as compliant with eating.  We have to tackle her fear foods! 
—end of quote

Piecing together your posts, I wanted to ask if you have heard of/considered PANS/pandas fad a contributor to your d’s medical picture?  

Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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Lovemygirl

thank you !  I enjoyed listening to it.  Resonated with me.   I will educate myself more on state not weight and then talk to clinic.  
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Lovemygirl
atdt31_US wrote:
 Saw this post from you in another thread:

Here is our journey thus far.  

D was around 140 lbs Feb 2019 at regular dr check up.   We went on a trip April 2019 for 2 weeks.  She was sick with a heavy cold for much of the 2 weeks.  When we came back she was out of school for approx 5 days recovering.  She wasn’t eating as usual due to the illness   

This is when I suspect it started in full force.  Although I think she had negative body thoughts prior to that.  


We noticed a huge decline in food consumption over the summer   We talked about nutrition, and how important it is for her growing body to get everything that it needs in order to be healthy. She was really receptive to our talks, and would “try “ to eat more variety of foods, but then would just slip back.essentially she was not eating breakfast, not eating lunch, going a full day at school without any food, brewing a lot of green tea and water which in hindsight was definitely filling her up. She would come home from school and cut up to apples and stay in a big bowl of green beans and take them up to her room and eat them. Then for dinner she would have veggies and a small piece of chicken. That was it for the day. Mind you that was right at the end prior to hospitalisation. 

We met with ED clinic on a Tuesday which ENRAGED D so much that she  got out of car after appt when we were trying to get some food and drink and walked off.  Wouldn’t come back to the car and was running around vacant lots for an hour.  I called police.  
ED clinic said 2 refusals of food in 24 hrs bring her to ER.  So I had that set in my mind.  There was no way that home was a good place for my D.  


We got home and I prepped food for D , she came down and ripped it up and threw it across the room.  

Then made her usual veggie plate.  

Dinner was veggies and chicken , a tiny piece. 

Next morning D walked out of house in dark and rain , and I had to
call police to
bring her back.  My son was asleep so couldn’t leave him as he’s young.  

D locked me out of house and threw a massive tantrum , ripping curtains off wall and throwing stuff.  My son was in house with her and he tackled her and pushed her to the ground and let me in.  

I got son off to school and called EMT who took her to ER.  

She was admitted hours later ( take food and drink with you! They will give you nothing!) 
and was orthostatic and had crazy blood work. Her levels showed really high inflammation, they were thinking lupus or something auto immune too.  

D was fully compliant with all food in hospital and gained a really good amount of weight. But it took her 4 days to come around to talking to me and Dad.  She was seething with  anger.


Prior to ED she was just a fantastical sweet girl  who was just so wacky and fun.  Now she is so angry.  

 It she is still just as compliant with eating.  We have to tackle her fear foods! 
—end of quote

Piecing together your posts, I wanted to ask if you have heard of/considered PANS/pandas fad a contributor to your d’s medical picture?  



Hi.  How would I go about finding out more information about PANS?  What is the criteria / and what questions should I ask at clinic ?
Are you able to test for it ? 
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atdt31_US
I am at work on phone ... can link more late. Search my posts (click my name) or search site for pandas in meantime ... I would just link to YouTube’s already on my other posts. It is a long shot. But the anger, odd autoimmune blood labs, and food restriction relative to illness make it worth a look. Might quickly decide to not spin wheels on it tho ...not meaning to distract, but it leapt out at me as a subway when I read your post. No, not one specific determinative test. Gotta run now... sorry. Search my posts for YouTube o go as good starting point that might make you k is “no pandas” it might make you think keeping looking into it is not a waste of time and energy. 
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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Lovemygirl

atdt31_US wrote:
I am at work on phone ... can link more late. Search my posts (click my name) or search site for pandas in meantime ... I would just link to YouTube’s already on my other posts. It is a long shot. But the anger, odd autoimmune blood labs, and food restriction relative to illness make it worth a look. Might quickly decide to not spin wheels on it tho ...not meaning to distract, but it leapt out at me as a subway when I read your post. No, not one specific determinative test. Gotta run now... sorry. Search my posts for YouTube o go as good starting point that might make you k is “no pandas” it might make you think keeping looking into it is not a waste of time and energy. 
.  


Thank you ! I did a quick search and read a little abt it.  Currently at therapy with D ... will
look more later.  Can I just say , I’m so very happy that I’ve found this forum.  Not happy , bad choice of words , but you all know what I mean ! You are all so supportive 🥰
  

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atdt31_US
Hi ... I do not want to leave you hanging and also don’t want to distract with talk of PANS/PANDAS if you read/watched enough to know it is not applicable. Post here if you want more info in this thread, otherwise I will assume you found the YouTube videos I have mentioned in other recent threads. Hope all is well! 
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
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Torie
Lovemygirl wrote:
The problems we are now facing : 

She wants more freedom to eat with friends ( she eats snack in nurses office and lunch in an alternative lunch room that has monitoring.) 
She wants to be able to pick what she eats 
She wants to do more exercise ( she’s currently doing Track 2 times a week, more for social aspect than getting fit to be honest ) 
She is isolating herself , locking herself in her room all the time.


Sorry to be blunt, but it doesn't matter what she wants, in any area where ED is concerned.  Most here have developed the habit of acknowledging her request and changing the subject.  ("It sounds like you feel strongly about that; how do you like my new socks?")  Unless your family is a rare exception, rational arguments will get you nowhere.  (This is so weird, coming from our formerly rational kids who continue to be rational about almost everything else.)

Almost all of them "want" the things she wants.  Those decisions are to be made by you, with little if any input from her.  Of course, we consider what we think our "real" d cares about, while keeping in mind that we are often hearing from the sneaky, despicable ED.  xx

-Torie

"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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ValentinaGermania
I see that the same. If she would want to do something really dangerous like visiting somebody from the darknet or taking heroin you would stop her and say NO to that. This is needed here too. AN is a life threatening disease and her biggest enemy at the moment and she wants to stick to that. You are the parent in charge and responsible and you can say NO.
Keep feeding. There is light at the end of the tunnel.
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