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leahkana64

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Reply with quote  #1 
Hello to all, I have a Daughter who have been sick for the last year with anorexia and bulimia, we had put her in 3 diferent hospitals for 8 months and she always find a way to leave ( she is 22 years old). This last time we brought her back home and in 4 days I found a team of doctors for her. She also had been batling bipolar for 10 years. She came back home last wednesday and oru lifes are upside down, she have been eating very little 3 times a day, and today she trow some of her food on the trash on a moment I was not looking at her. We made an agreement and she had broke it and all my family is a mess now with this situation. I dont know how to survive her been here with us and really help her, im exausted, depress and with anxiety and panic attacks. i dont know what more to do, been trying to help her all these years and I dont know what more to do. What to spect having her here? Any one in this situation¿ please help,somebody talk to me, my husband no even talk to me. My son is always in his room . My mother is always having an opinion and my daughter is always a mistery to me. Thanks
seaglass

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Reply with quote  #2 
Oh goodness. You sound very lost.

It's such a hard hard illness to fight.

I'm battling it with my much younger daughter and am not sure I can help but wanted to reach out.

The people here are very supportive and wise and I know you'll get advice.

It sounds very positive that you've got a team of doctors in place. It's hard. Your daughter sounds very ill and entrenched in her ED. Try to separate your wonderful girl from this awful illness which makes her act in ways which hurt you.

That very advice used to annoy me but it did help. Your d is overtaken by her eating disorder and scared and doesn't want to get better. And she will push against you but if you can stay strong and keep reassuring her you love her and will fight to keep her safe and well then you put up a safe front in all her anxiety and fear.

She's eating small meals. That's good.

You sound like you need support. Have you got any family or friends who can rally round to support you? The lovely folks here will.

Have you read Eva musbys books and watched her videos? They give great tips and advice.

It's easy to feel alone in this fight. But here we all get it.

I'm not sure I've helped at all. I just want you to know you've found a great place here. I hope others reply with more practical support and advice.

When things are at their toughest I've always taken each day by day (or hour by hour). Some meals will go well, others won't. But there's always hope and a way forward.

It sounds like you need a supportive team around you. Have you got appointments in place? Is there any possibility of inpatient care where she is secure?

Right now though try to take a breath. I hope others with more wisdom will give you better help.

Just know we are all here for you.

It's hard right now. You sound like a wonderful mother who is fighting to get the best care for her daughter. That counts an awful lot.
leahkana64

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Reply with quote  #3 
Thanks very much seaglass for your answer, I really need company and somebody to listen to me, you are righ, Im lost, Im in pain emotionally and my soul is broken in hundred pieces. Your kind words help me a lot. I can tell you that is very dificult for others to understand and accept this ilness and having to fight for her life and also trying to make others understand the danger of this situation ( even inside home) is exuasting and some times even humiliating, She dont want ti go back to inpatient, we are given her time to try to get better with the team of doctors or we will have to force her ( she sign a medical power of attornery ) but I dont know how afective that paper can be, but we are given her this last opportunity . I really dont have a support group here were I live, trying to find one near home but is very dificult. I feel so alone in this and my mind and body are giving up on me. my psyquiatric want to send me to the hospital for a week but I cant leave my son ,he is 14 and very attach to me because of all this mess. god bless you.
toothfairy

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Reply with quote  #4 
Hi there,
Welcome to the forum.
Delighted you are here, & I hope we can help you.
Feel free to post as often as you like, there are people here from all over the world, so generally somebody is always up!
You have done a great job getting the medical
Power of attorney - Well done Mom!
This illness us really awful, nobody would believe us...only us!!!
It is great that she does not want to go back to IP. This gives you leverage.
Do you mind me asking where in the world you are so we can get an idea of the treatment/ support you have.
Do you have a contract after the last IP stay?
Best wishes
TF

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
leahkana64

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Reply with quote  #5 
Dear Toothfairy, we live in Texas USA. Thanks for welcome me both of you that had answer.
I want to ask you what you mean that is good that she dont want to go back to IP and that gives me leverage??

What do you know about the medical power of attornery? Is really worth something in case we need to use it?

And also what is a contract after the last IP?

Is so good to have somebody to talk to that understand our situation. sometimes I dont even understand myself, and the panic, sadness and madness in my head.

God bless you
toothfairy

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Reply with quote  #6 
Hi there,
Yes this is complicated. To start with, where has your Daughter been in treatment ?
Have they ever at any facility, given you training on how to deal with your D & this illness at home?
How did you end up getting the medical power of attourney?
Was it not something you instigated?
Do you have her on a meal plan & can she comply?
Do you know her current bmi?
The idea of having leverage is that you can get her to eat to avoid IP again, if she really does not want to go back.to hospital she will eat! So thats great.
A contract is an agreement that the person will adhere to at home, like a set of ground rules with consequences.
Best wishes

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
Foodsupport_AUS

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Reply with quote  #7 
leahkana64 welcome to the forum. Sorry that your daughter has been so ill for so long, with multiple mental health issues. 

We are an international forum so posters come from all over the world. Hopefully someone from Texas will come along and be able to tell you how useful a medical power of attorney is. 

Your family sounds like it is already at its wits end. This illness takes its toll on everyone. Family included. Learning ways to care for everyone as well as the person with the illness is essential. You don't say what treatment your D has specifically tried. Many people with anorexia ( does your D have binge purge anorexia rather than anorexia and bulimia?) are reluctant to have treatment. Keeping them in treatment can be difficult, but regaining weight, regular meals and stopping any eating disorder related behaviours are the first steps to recovery. 

There is lots of information on this site. You can go to the learning center here and download lots of information about eating disorders and treatments. I would recommend reading through the Essential reading section. 



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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.
leahkana64

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Reply with quote  #8 
toothfairy my daughter was in Dallas for 3 months in an ED center, she was kick out without reason and I brought her home for ECT that didn't worked becuase she lost 21 pound during the treatment. After that we have to put her back in Dallas but she stay only 10 days ( she said the nurses and changes made there with doctors and bad treatment ) and then I move her to ERC in Denver colorado, things got worse because the doctors didn't listen to my advice on her medications and the bipolar disorder become a big problem and she started cutting and finally said she will kill herself then they didn't want to care for the situation and send her to a psychiatric hospital for a week where she didn't eat again, finally I was able to take her out from there and put her in a more strict ERC also in Denver, after 2 1/2 months that she was doing almost ok, one day she decided to leave and no matter the doctors send me in big dark letters a reassurance that they will keep her there at the end they let her leave last week.
I don't have any training for helping her at home and all the family is so affected that the environment is very difficult to control emotionally.
She signed the medical power of attorney as a condition to be able to come back home and let us help her.
what you mean by this "Was it not something you instigated? " ????
she have a nutritionist but they are supposed to start a meal plan this friday , if she will be compliant I don't know.
We don't have any idea of her BMI or weight, she don't let any doctor weight her, only the nutritionist have been able to measure her and do some test.
We have rules and consequences but she see them as a threat ,and she is compliant in some degree. 

PLEASE if anybody had used a medical power of attorney , can please explain that to me? how it works? the notary person who validate it told her many things that she asume she can cancel that anytime, even when the paper say is irrevocable, with complete decision power for us and with not date of end.
Torie

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Reply with quote  #9 
Quote:
Originally Posted by leahkana64
PLEASE if anybody had used a medical power of attorney , can please explain that to me? how it works? the notary person who validate it told her many things that she asume she can cancel that anytime, even when the paper say is irrevocable, with complete decision power for us and with not date of end.


I don't live in Texas so I only know what I found from googling, but (so sorry to say) it doesn't sound like much help at all.

Excerpts:

"What is a Medical Power of Attorney? 
It is a document, signed by a competent adult, i.e., “principal,” designating a person who the principal trusts to make health care decisions on the principal’s behalf should the principal be unable to make such decisions. The individual chosen to act on the principal’s behalf is referred to as an “agent.”

"Can the agent make a health care decision if the principal objects? 
No. Treatment may not be given to or withheld from the principal if the principal objects. This is true whether or not the principal is incompetent. §166.152(c)"

There's a lot more here - hopefully I'm misunderstanding the intent, but it seems it is more for situations where a person (the principal) is in a coma or otherwise unable to communicate.

https://www.texmed.org/Template.aspx?id=65a

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
leahkana64

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Reply with quote  #10 
Thanks Torie for looking into this. No much hope in that but the notary person told us that we can call the police and they evaluate de situation and decide if we can take charge and force her into treatment, also the doctors always get surprise when I give them this paper.

Now is 4 am and I cant sleep, but after this info i think my anxiety will get worse. No matter was a recomendation from a lawyer from my husband company to do that document first.


I have another question that maybe somebody can answer for me:

My daughter have serious digestive problems, one of them is that the food she eat takes a lot of time to procces and digest, this means that she can eat and then trow up ( purge) like 2 hours after eating?
Generally I stay with her 30-40 minutes after she eat but a dont know if that is enough?.

Now I have a panic attack, she was in the bathroom at 4 am changing pijamas and woke me up ( everything. Woke me up) I went and check but didnt find anythig, but my anxiety dont let me sleep anymore.
Felling like trowing up too because of the anxiety but I cant do that .
tina72

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Reply with quote  #11 
Hi leahkana64,
I hope that you signed off means you are sleeping a bit. You have to care for yourself because YOU are your d´s only hope. Try to find somebody who can stay some time with her (maybe a neighbor?) so you can sleep an hour or two. There is no help for anybody if you have a break down.

Digestive problems with weight recovery are normal, I think. The metabolism has to get used to do his work again. But I think its enough to stay with her for 30-45 min after meals. Did she ever purge? Or are you only afraid she could do it? I don´t think purging is possible 2 hours after meals.

Please care for yourself. Calm down. You are doing the right thing. It´s exhausting and you need to reset and find new power. It´s a long run and you need to fight a lot of battles to win the war. There are not many things you can do really "wrong". You will learn how to manage this. You will make mistakes and you will learn how to improve things. You can do this. Try to get some help. It´s important that you can take some time off.

Tina72
leahkana64

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Reply with quote  #12 
Thanks Tina but I cant sleep anymore, another spell of tears and panic. i know that getting sick myself will not help anybody but having a child sick for almost 10 years ( she is also bipolar) and been the only one that had take care of every situation,hospital, emengencies, siucidal attemps, and anorexia at 12 and now at 22 for a year is too much for my soul. seen my family destroy and disfuncional, not having support or understanding from the world is like too much. scare to death that my 14 years old son end in the same situation is another cause of panic for me. i think I see too many ghost and monsters arround me and this situation that everything and anything scare me and bring me to tears. Thanks for writting.
sk8r31

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Reply with quote  #13 
Hi Leahkana64

I can only imagine the kind of stress and worry you are under at the moment.  From your posts, I think the most critical thing is to get support for yourself as soon as possible, in order to build up the physical and emotional resiliency that you will need to get yourself through these challenging times.

Can you make an emergency appt for yourself, to get support?  Sometimes some medication for the short-term can help with sleep and anxiety.  You do not want to end up in hospital yourself if it can be avoided...

Having a trusted friend or family member to vent to can help, and certainly, this forum can provide some support from those who really can understand what you are going through.

Sending you a virtual hug, and warm support from afar.  Please do all you can right now to take the best possible care of yourself.  It will help both your d and your s if you can take the time now to ensure your own health is as strong as it can be under such trying circumstances.

Warmly,
sk8r31

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Torie

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Reply with quote  #14 
Hi again - I wonder how your d is doing with respect to the bipolar symptoms.  Is she compliant with the treatment for that and, if so, do you feel it is relatively well under control?  If she is taking meds for that (or anything else) it's important to control any purging because that can wreak havoc with the medication.  In general, most here try to stay with our ed-kids for at least an hour after each meal / snack because that is the commonest time frame for purging.  But once purging is established, it can take place even longer after a meal.  If your d is on meds for bipolar, I would call that doc and ask how long meds have to stay in for full effect.  If they don't want to tell you, you could either point out you have med power of atty or you could say you aren't asking about your daughter in particular - no personal info requested - you are asking instead about THE MEDICATION.  As I'm sure you know, it's also important to make sure she is actually taking the meds and not just pretending to.  Some here have had to watch their d take the med and then have them open up to inspect the mouth for a hidden pill.  

I wonder if we could help get your h on board.  Sounds like you and your d both need him.  There are a few dads here who often offer to speak with someone's h - do you think something like that might help?  Or, would he read some articles?  Watch some videos?  Do you think he understands that if you have a breakdown, he is the one left holding the bag to care for everyone, including you?

So sorry we are at such a distance.  I just want to give you a hug.

Hang in there!  xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
leahkana64

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Reply with quote  #15 
Thanks for your kind words sk8r31 , yes I have my psyquiatric help and medications, one of them dont work at all but the other give me at lesat 2-3 hours a day of calm. You are right, I cant end in a hospital at this moment. Trying my best. family and friends have a very dificult time understanding the ilness and my exaustation , they think all this is as simle as to force her to eat. I also send you a virtual hug, thanks for writting.
leahkana64

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Reply with quote  #16 
Torie at this moment she is having electorconvulsie therapy and also taking her meds. that is exactly what happens the 3 times she was in the hospital, becuase of the weight loss she got intoxicaded with lithium 3 times and they remove that medication ( the best for her) and then they have to reduce the dose of the other meds because of the weight loss too, finally she got so sick with the bipolar that the ED become part af all the mess, and all those months where lost because she didnt got well.

She is taking her meds, today started a new one hoping that will help, her psyquiatric knows her for 7 years and is a wonderful doctor, he is the one doing the ECT now. We decide today to rent a wheelchair for those places she want to go but is a big long walk.

My husband have his ups and downs, I really wsh he was more understanding of the ilnnes and the stress causing in me these to many years,but Im sure he is terribly scare of all this and he tried to protect himself working and been busy all the time.

God bless you all for sharing your time and expiriences with me, is wonderful to have somebody to talk to when you feel so alone, lost, with a body and soul in pain always.
tina72

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Reply with quote  #17 
Hi leahkana64,
the problem with medication is that most of them don´t work well as long as you are underweight.
Try to get her to drink some smoothies. I make them with fruit and vegetable only and they look and smell very light and healthy. You add oil to it (best is rapeseed oil, that doesn´t taste), you can add up to 100 ml to a 500 ml smoothie so you get about 900-1000 calories with that one drink. She will not taste it. Try to serve it 3 times a day, I told my d its good for her metabolism. You will see progress after a week or two.
Try to give your family and friends more information about the illness. They must learn that its not as easy as just start to eat. And try to talk to your husband. I´m sure he is scared, who is not. Maybe he could read a book like Brave girl eating by Harriet Brown to understand whats going on in your family. There is also available an audio version so he might listen to it on his way to work.
We are all here for you. Don´t give up. Write as often as you like. We all know what you are going through and what you feel. This is nothing you can stand when you are alone.
Tina72
leahkana64

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Reply with quote  #18 
unable to sleep 3 nights in a row, my daughter wakes up every nigth and go to the bathroom and that wakes me up too and then I cant back to sleep. Tonight finally I decided to check all my bathroom and closet but I didnt find anything, but what surprise me is why I cant hear the toilet but I can feel that she is awake in the bathroom. Having a little more clam 2 hours a day ( only in the afternoon the meds work for me, I dont kmow why), trying to be patient and understanding, scare to dead about her, we rent yesterday a wheelchair and she is not so happy about that but is the only way she can go with us for long walks. I can see she is loosing wieght no matter she is eating small amounts of the same food every day ( is that ok?????). Praying to God to help me and to save her , feeling how all my body trembles day and night.😔😔😔
toothfairy

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Reply with quote  #19 
Hi there
I think that you need some more support for yourself first as the priority.
Do you have any family member, neighbour or member of your church community , or your childrens school that can help you?

Can you call up a group for example NEDA & see if there are any support groups that you can join?

http://www.mhatexas.org/eating-disorders/
https://www.nationaleatingdisorders.org//

Can you call the hospital & explain the current situation & get set up for another admission as a plan B.
Can your GP help you?
Best wishes

__________________
Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
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Reply with quote  #20 
Hi leahkana64,
if she is only eating small amounts of the same food every day, its not o.k. Its not enough to gain weight. You have to make her eat more. She has to eat everything you will present her (magic plate). She should not be in charge for her meals. She should not decide what and how much to eat. You need a plan to get there.

Try to read Eva Musbys book "Anorexia and other eating disorders. How to help your child eat well and be well" as soon as possible. You will find a lot of tips for every situation you might be confronted with. Its not important how old your d is to help her, she acts like a little child about eating.

If she goes to the bathroom every night and don´t use the toilet, there is something wrong. You must check what she is doing in there. Does she lock the door? Can you hide the key or hang out the bathroom door for 1 or 2 nights? It sounds strange, but strange illnesses need strange enemies... Try to get in. Maybe she is purging into the sink? Or out of the window? Everything is possible. Are you shure she is awake and not sleepwalking?
Tina72
Kali

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Reply with quote  #21 
Dear Leahkana64,

I am praying that you find some effective help for both you and your daughter and am so sorry you and she are suffering like this.

Quote:
I can see she is losing weight no matter she is eating small amounts of the same food every day ( is that ok?????). Praying to God to help me and to save her 


We all know firsthand how distressing it is when our beloved children are becoming critically ill and we are feeling helpless to help them. There are many parents on this board who have been in that situation who have been able to turn things around and help their children. I have several close friends with children who have been diagnosed with bipolar and they are leading good lives with the illness under control. It is possible. The complication of the ED and the bipolar certainly make it more complex and difficult but your d. can get well again.

It seems to me, as others have suggested, that it could be beneficial and helpful for you to get yourself support, either with a therapist or by having family and friends support you if possible. And we are always here 24/7 if you find it unbearable. Please keep asking questions and we will try and help you. And the other very very important piece of this puzzle is to figure out how to weight restore and feed your d more food than she is currently eating. That can happen at home under your guidance or it can happen in the hospital. When you are supported it will help you support your daughter. When you see you are able to help turn this around you will be able to feel more empowered and become stronger.

Is your daughter under the regular care (weekly) of a doctor (GP) who is knowledgeable about eating disorders and is her heart rate, electrolytes, and orthostatic blood pressure being monitored? It is very important if her weight is low. If she is in the bathroom at night and the toilet is not flushing she could be self harming or cutting. The GP can also check for any evidence of self harm.

There are some helpful posts in the hall of fame about refeeding and treatment. 

http://atdthalloffame.feast-ed.org/

I found the post called "How to feed a stubborn Anorexic" particularly helpful.

How are mealtimes in your home? What and how much and how often is your d. eating? Many of us found that we needed to make some very practical changes at home, regarding food, before things improved. For example, since your d. is purging, some parents have found that spending time with their kid after eating and insisting that they visit the bathroom before the meal and not after, can help interrupt that behavior. My d. was not allowed to go to the bathroom after eating for 3 months and it helped. So for example, if you serve meals and then take your d. for a walk in the wheelchair afterward she will not be able to purge the food. If you let us know perhaps we can make some suggestions to help you increase your d's caloric intake. Smoothies are great, as Tina says, here is the recipe I use: grind half a handful of almonds, add banana, strawberries, full-fat yoghurt, heavy cream, a dash of vanilla and a couple of tablespoons of honey, top it off with some full-fat milk and a couple of ice cubes and blend again. Also keeping to a schedule, 3 meals a day with 2 or 3 snacks, can help. 

Have you watched this video? It has some good suggestions about how to support someone with an eating disorder at mealtimes.




warmly,

Kali

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leahkana64

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Reply with quote  #22 
Dear Kali, thanks for all your advise and kind words, I keep her next to meafter every meal for 40 min, and thanks to God she is not harming herslef, She sleeps with me for now. My big problem is that she is a 22 years old , very dificult situacion, Yes she have a internist, psyquiatric doctor, nutricionist and therapist. We satrted all that last week, took me 4 days to assemble the team, she also is in a online group for ED, she is doing the 12 steps with them. She will not receive the smoties, she prepare her own food and she have very small sancks. Today have been a very hard day for her and for me,we went to a shopping mall with her in the wheelchair and she got really upset of been like that, also because of the excesive malnutrition in the last year she developed Gastroparesis and that is affecting her big time with the eating.
Thanks to all, is so good to have a place were I can share my fears and worries and been understan and listen to. God bless you all.
toothfairy

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Reply with quote  #23 
Hi there.
Can you take over the meal preperation & keep her out of the kitchen while you prepare meals.
Can you tell her that in order to stay out of hospital she will need to conform to this.
She will need to eat 3 meals & 3 snacks that you provide her with - no negotiation, & suoervise the eating.
This is what needs to be done. She needs foods with lots of butter & cream to help her recover.

__________________
Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
toothfairy

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Reply with quote  #24 
This video is very good.
This video may help your H & your Mother to understand more


__________________
Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
tina72

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Reply with quote  #25 
Hi leahkana64,
you will not make any progress if she prepares her own food, because AN is preparing the food and it will ALWAYS be too less to survive.
You must get her to eat what YOU prepare wether she is 22 or 12 thats no difference because she cannot act like a healthy adult (a healthy adult would be able to feed herself enough food). She cannot get well by eating that small amounts. Thats impossible and will take another precious time.
Tina72
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