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Foodsupport_AUS

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Reply with quote  #26 
Has horrible as it is, it is great that she is doing this. It sounds like she is getting good support at the program and she is trying hard. It sounds like she has been struggling for a long time. Thinking of you and your D. Keep it going. 
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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.
mjkz

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Reply with quote  #27 
Isn't it amazing what they struggle with and through?  I remember holding my daughter once as she cried and begged for whatever next was coming to kill her rather than making her any stronger.  She needed no more character building experiences (she has a whopping dose of character!!).  Lot of times I would sneak off into my walk in closet and cry myself after assuring her that she could do it and that we would support her in any way possible.  It does get easier (maybe more routine would be a better word) as they form new habits and learn how to eat no matter what.  It is possible and she is doing everything she can right now to break into recovery.

Something I did with my daughter was plan out things for the future.  Your daughter wants to travel in her gap year.  Maybe now would be a good time to start talking about where and what she wants to see during those travels.  My daughter and I planned a cruise in the Caribbean.  I went along but she had a lot of freedom on the boat and knew I was there if she needed me.  She even handled the casino well (better than me to be honest) [biggrin]
Torie

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Reply with quote  #28 
So glad to hear the positives in your report!  Sucks that this is happening, but you are both doing so well.

Keep swimming.  xx

-Torie

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Francie

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Reply with quote  #29 
Hi HateED, I'm so glad for you that your daughter is in treatment and is willing to try and fight the disease. Continued good wishes and progress to you! XO
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HateEDwithApassion

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Reply with quote  #30 
Hi all,
Thank you for your kind words. Wanted to give you a quick update. My daughter tried to quit the PHP program after a hard day on Monday. Said she was done, didn't care if she never got well, wasn't going back, and went for a run. Had a bad shouting match with my H, self-harmed, and my H finally realized how bad this truly was. They had a heart-to-heart, she agreed to try, but when the morning came, she refused to go. 

I let her drive to the program so she could tell them in person she was quitting. She didn't want to go in. I told her she had to give them that courtesy, so she went to the locked door. Refused to go in worried they would lock her in.  They did talk her into coming in because she had to talk to the doctor about it directly. The goal -in my mind - was to just get her in there, and I hoped they could talk her into staying.

They did that and more - she agreed to inpatient care. The doctor said it would help her stabilize, reset, get the meds adjusted so she would get some relief and just give her a break from worrying about getting meals in at home on her own. So she stayed there last night. She cried and said she wanted to go home, but also said it was a relief too because she can't exercise or skip meals or snacks, even if she wants to. It takes that off her shoulders for a few days.

The doctor there is very good - very unflappable. He has a very calm demeanor and is kind of grandfatherly. He also swears a lot which I think makes him seem human. So, that's where we are at. I'm grateful she's still in treatment. Praise God for the team that got her in there. I'm also mad at myself that I didn't see how entrenched this is again. This is going to be a very hard battle.

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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
mjkz

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Reply with quote  #31 
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I'm also mad at myself that I didn't see how entrenched this is again.


You did see it happening but there wasn't much she was letting you do.  I'm glad they got her inpatient since she was refusing to go to the PHP on a daily basis.  I hope this helps.
HateEDwithApassion

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Reply with quote  #32 
Hi all,
Quick update. D is still inpatient but may be coming home today or on Monday. The PHP program has less meeting time and meal support on weekends, so the doctor thinks it would be wise to stay the weekend, get the meal support and then return to PHP on Monday when meal support is more robust, making the transition easier for my D. We meet today for a family session.

There are some very sick girls on her wing now - and it made me sad to hear her say that while she doesn't want to be as thin as they are, it also triggers her to think she's so big. Instead of it scaring her that someone could get that sickly, it makes her feel guilty. Gosh - this disease is seriously evil.

My question is this -- I feel like I need to have a plan B, C, D in my mind in case she comes out of inpatient and then balks again at partial. She has said it's going to be very difficult for her. I'm thinking more about the UCSD or Center for Balanced Living one-week intensives as options, but how do they intertwine with PHP or are they in place of or after PHP or when PHP isn't working or ?  Probably not a one-size fits all, but looking for others' thoughts. 

Anyone who has done the one-week intensives, could you share when and at what stage of treatment you decided to go that route? Thanks for continued encouragement. I have to admit - I'm nervous about her coming home too.

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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
Torie

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Reply with quote  #33 
Quote:
Originally Posted by HateEDwithApassion
 I'm thinking more about the UCSD or Center for Balanced Living one-week intensives as options, but how do they intertwine with PHP or are they in place of or after PHP or when PHP isn't working or ? .


Sorry, I don't know, but I think others have said they are very helpful about answering questions if you call them.  Best of luck and please keep us posted.  xx

-Torie

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mjkz

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Reply with quote  #34 
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Center for Balanced Living one-week intensives


If I had to do things all over again, this would be my plan right out of inpatient.  I've heard mixed experiences at UCSD with YA so I would got to the place in Ohio which is set up for YA/adults specifically.  I really think it would be an eye opener for both your daughter and your hubby.  You work together to do a contract that fits your situation so no one size fits all and from what I have heard, they work collaboratively with the sufferer and the support people on the contract.  If you want her to go back to PHP, I'd keep this option as Plan B, C, and D.
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Reply with quote  #35 
Thanks, mjkz. She is going back to partial after today. She seems to have bonded with and trusts the therapist and the medical director/psychiatrist, so I'm going to use CBL as plan B if partial falls apart and maybe even in if/when she is ready to step-down from partial. I think she would be open to it especially since it's just a week.

As for the contract, we have not yet done a contract because she will still be in partial but I am working on adapting yours. I'm nervous today about if she refuses or has a meltdown and won't go back like she did last week, but I am praying, trying to mentally prepare myself for the ambivalence and frustration so I can manage my own distress like you said. So wise - because that is something I can control. 

The one very good thing that I can say about this experience of inpatient is that it has definitely changed the perspective of my husband, hearing my D say some of the things that go on in her head about herself and the distress and sadness she feels, and how overpowering the ED thoughts are. I think he finally understands that this is not mainly willfullness or defiance, but a serious mental illness that can't be rationalized with right now. 

Thank you for all of your wisdom. I'm going to need it.

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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
HateEDwithApassion

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Reply with quote  #36 
Update: My D was discharged from inpatient last night and returned to partial treatment today, preceded by a visit with her DBT individual therapist. Lots of talking and crying. She shared a lot last night with me, cried a lot, expressed a lot of emotion, which has typically been something she has avoided. So the transition was positive. She ate and is feeling positive at the moment. I am taking everything day by day, knowing that she will struggle again but grateful that this first transition in step-down care has been smooth.

She is back on meds, and that is likely helping too, and as much as we did not want to do hospitalization, I think it has given her some insights that maybe would have come no other way. We will see....

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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
Torie

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Reply with quote  #37 
Still trying to catch up on all the threads ... I wanted to belatedly commend you for your stroke of genius in requiring your d to go to the cebter in person to tell them she was quitting.  Yay for you both!

I'm so glad the initial step-down went so well - a good reminder that brighter days are coming.

Keep swimming xx

-Torie

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mjkz

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Reply with quote  #38 
How is the first week in partial going?
HateEDwithApassion

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Reply with quote  #39 

Thanks for checking in. Yesterday morning, I would have said step-down was going quite well. She has been eating her snacks and breakfast well, very open to talking and emotional. Talking her plans for this fall and spring and college next year. Feeling good about things, but quick to tell us she's got a long way to go... all great news.

After a family session yesterday, something - and none of us know what - set her off. Her big concern during that session was that she really wants to try and do this without me asking her about meals and even make some of her own. We talked about the pros and cons and our worries about it. But I said I would give it a try while she's being monitored daily in partial. 

Whatever hit her wrong, she clammed up and left the meeting shut down. She had asked for the car but due to miscommunication she would have to drop me off first and would have been a little late meeting friends, so she freaked out and refused to go out with them at all. Was furious. Wanted me to find another way home.

Then refused to eat last night or take her antidepressant and then no breakfast this am before partial. Back to giving me crap answers and snarky responses like "Oh well, I guess I'm not eating then."

She's looking at me again like she hates me. It's crazy. How bad things go in just 24 hours. There is no middle ground. None. Anything at all goes wrong and she completely shuts down and regresses back to food refusal and no meds. It's like the ED wants to fight so she has an excuse not to eat. 

She did go to partial this morning, and they weigh and ask her about her night and morning. Will she be honest? Who knows. I honestly don't know what to do with this kid. I can't fix this. In the real world, she has to be able to stand up to feelings and not regress immediately into the ED. 

I'm so sick of this disease, sick of my life, sick of lots of things in my life right now. I'm sick of being the one who is running around trying to help her and then getting the brunt of the ED evil. I know it's not her, but I'm beaten down and it still hurts. I didn't react - just let her walk out the door. 

We'll see how she comes back after the program today, but the past two times this has happened, she has not come out of it herself. The first time, she was admitted to partial. The second, to inpatient. Maybe she does need residential. I just don't know anymore. 

Combine that with tough stuff with my husband, and it's just a hard morning. I want to take off for an island by myself and never come back. 



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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
EC_Mom

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Reply with quote  #40 
I'm so sorry. When my d was sick I remember feeling like my life had become a surreal nightmare and I wanted to just be removed to a faraway place. I have no advice but know that you have my admiration for your continuing efforts and I am rooting for you.
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Reply with quote  #41 
I hear you.  She is repeating the same pattern that got her where she is today.  She wants to do it all herself, takes a step forward towards doing that and then it is like hey, I don't have to do any of this because no one is watching.  So she refuses to sign releases and stops taking her meds.  Kind of an "I want to prove myself" and then goes out of her way to sabotage herself.  It is awful having to live through that again and again so I guess the question now is are you going to make yourself live through it again? 

At this point with my daughter, I'd be calling partial to have them evaluate her for a higher level of care based on her refusal to eat and take her meds.  You gave her the chance and she is showing you she can't handle it.  If partial didn't readmit her, I'd give her the weekend to be eating 100% of everything and taking her meds faithfully or pull her out and going to plan B.  My daughter did the same kinds of things and while it may seem premature to pull her at this point, something has to change this pattern and stop it from repeating again and again.

I'm so sorry that what started out so promising went to hell in hand basket so soon.  I know my daughter had the same pattern there too.  She would share and then it was like something in her head punished her for opening up and she would regress.  I hope you can take time this weekend just for you.  Part of learning to deal with a YA in my experience at least has been learning that I can't fix her and I can kill myself trying but that is not fair to her or me.  One day I said to my daughter that I wasn't her punching bag and she needed to use her other resources to get herself back on level ground.  Then I took a weekend off.  It was a huge leap of faith and scared the heck out of me but it also showed her that she had to start using the resources she had other than me and also what it would be like if I was not there and available all the time.  Total game changer and wake up call for her.
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Reply with quote  #42 
Mjkz,

Thank you for taking the time to share your insights and experience. I am going to reach out to partial tomorrow. What I am figuring out is that when she has less hospital support on weekends, I think she gets anxious and melts down, which does seem to indicate needing a higher level of care. She did eat yesterday and took her meds, but only did a small breakfast today so far. She's complaining about her stomach, blah, blah, blah. Doesn't want to be hovered over, but clearly needs to be hovered over.

Yesterday, my H and I went golfing while she was at partial. It was fun, and I'm glad we did it because our marriage is very frayed by the ED. We talked about the fact that if she's going to stop eating and stop taking meds and not stick with basic behaviors to help her get well, then maybe it's time for her to move out. She treats everyone terribly when in the midst of ED, and her sister is starting to be affected more and more. It breaks my heart because she would have nowhere to go, so of course I worry about what else worse she would get into. I know she really does want to be well in moments of clarity and she feels guilty and sad about hurting us. She was very emotional about that while inpatient, but she must not be strong enough on her own to fight the ED. 

It's the hardest when you see your child excited to get well, but very quickly see it eclipsed by the ED personality, like within days - and then there's very little chance of talking with her rationally. 

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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
Torie

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Reply with quote  #43 
Hi IHEWaP, I went back and re-read some of your old posts to see if they might some some ideas to suggest.  But what I found, of course, is that you know your d, you know this vile illness, you've done the DBT and the meds and the various treatment levels, and of course you know your d so very much better than I do.  

So I can only say that I think your instincts are very finely honed at this point.  You brought her through once, and you will bring her through again.  But I'm so, so very sorry for what your family has to endure in the meantime.  As you said, it does sound like she needs a higher level of care.  And then the CBL (?) weeklong program might be useful for your family as a whole.

As a side note, it is extremely sobering to read how strongly, how suddenly relapse can happen.  Yikes.  Thank you for sharing your story as a reminder that we need to keep on keeping on with the vigilance for years and years - and even then, keep our fingers crossed because in the end relapse seems to be mostly the luck of the draw.  

Glad you were able to go golfing with your h.  Best of luck with that, too.  xx

-Torie

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HateEDwithApassion

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Reply with quote  #44 
Hi everyone, 
Update - she is asking to be discharged from partial treatment today. Says she doesn't care about anything anymore. Wants to die. Is depressed. 

I have texted back, encouraging her - we believe in you. The depression is from the eating disorder. It will get better when you are healthy. You can do this. We will support you. Please stick it out.

Then I even went to things like - if you sign yourself out early, our insurance may not cover the care you have received. Usually she feels very guilty about what all this does financially and to the family. I thought that might matter to her - Her response - I don't care. Take it out of my savings. I have enough.

This is just craziness. I've come to see that my daughter is literally two people - my sweet healthy child and the ED B%^$# that is currently dominating her. They don't look or act the same and there is no rationalizing or reasoning with the ED B#$%^ at all. It's like my D is not inside that body when the ED personality is showing itself. Like she's possessed - truly.

So, we will be faced with a tough decision. I think we have three options to present to her but need your advice: Tell her she can either: 1) Stay in partial and take meds and remain committed to it until discharge. 2) Move up to a residential treatment program or 3) Move out. That one scares me since she's so unstable. But she is terrorizing the family and her little sister is being affected, as we are. How can you make an adult want to be well? 

She's at a psychiatric hospital as we speak - I'm praying the doctor will - for the third time - find a way to get her to go inpatient again or move to a higher level of care. He seems to be able to convince her to accept help even when she's ready to walk out. Please pray he can do it again. We have no influence on the ED personality.

She has a ton of money in savings that she earned over the past years from working. She is planning to use it to go abroad and work for her gap year plans for several months. It's still in a parent controlled account, but I believe she can get to it if she checks into it. Part of me is also thinking that we should let her book her plane ticket and go. If she crashes and burns while there, then we have to act, but maybe we have to give her the freedom to crash and burn before she will surrender to treatment. Nothing else - encouragement, control, threats, coddling, are working. Nothing.

She is so much more mentally ill than I thought with this disease. And to think - she was still my sweet daughter before our family meeting on Friday. Like a light switch - that fast. I have no idea what triggered the ED personality to take over again, but it's fully in control. Any thoughts? 


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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
mjkz

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Reply with quote  #45 
I'm so sorry to hear about her turn around.  I would also add to your choices that if she takes choice A, there will be no more deciding on a daily basis that she is discharging.  None of you need this daily drama or whether she will stay or not.  Also if she picks choice A, I'd make it very clear that meds are nonegotiable and get that contract written for her so you can give it to her.  It is always scary putting a choice like this to our kids but sometimes you have to in order to save the rest of the family as well as yourself.  Will be thinking about you as this is unfolding.  My daughter said she never realized how serious I was until I put that same kind of choice to her and then actually followed through.  For us it was the turning point!!
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Reply with quote  #46 

Hi all,
I haven't updated for a while because there have been so many ups and downs. 

She was discharged from partial on Monday. Mentally - not ready to be more independent with eating, but clinically they couldn't make the case to keep her She's stepped down to intensive outpatient. Not great. She restricted this weekend while on a family trip. Is ED b#%$ personality again, which means no matter how kind, encouraging, gentle we talk with her, our conversations end with her saying - "Leave me the f$%^ alone. Kick me out if you want. Go ahead." 

There's more to this, but I won't burden you all. Suffice to say - I have decided tonight that I have to let her fail. We have tried everything else. As soon as we pressure her or try to control her in any way, she stops eating completely. We had to leave our family trip early because she made it so miserable to be in a hotel together. And it was something we really looked forward to.

So, we have to let her fail. What other option is there? I know she will not eat enough. I know she will become even more depressed. I know she will have even more suicidal thinking. I know she will spiral far and fast. I know all this, and am truly powerless to stop it. We have stepped in and gotten her into inpatient. Partial. DBT. Weekly therapy. ED dietician. Pretty good treatment team. Now, as her doctor says, she just needs to do every part of her treatment plan. Food, meds, therapy. She can't. She won't. 

Tonight - I'm done. If she ends up hospitalized for depression or for ED or whatever, that may be what it's going to take for her to comply with treatment. I am out of ideas. Out of energy. Just have to let her take this where it will and pray that at the bottom, maybe she will want to climb to the top. I can't save her. I wish I could. 


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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
mjkz

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Reply with quote  #47 
I wish I had something encouraging to say.  Are you going to let her stay with you and be sick?  Any luck with a contract?  I personally couldn't let my daughter get sick living with me and I knew I couldn't save her which is why she moved out into a supported living situation.  Hardest decision I ever made but it was the best thing I ever did.  I'm thinking of you and your family.

P.S. Next time move her into her own room on her own dime during that family vacation.
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Reply with quote  #48 
mjkz,

Thanks for reaching out. Today we had a big blowout over her not eating again and wanting the car. My H and I were not on the same page, so she ate a little and I told her she could drive then. However, she was really rude to her dad then, so he said forget it. You don't treat us like this and then have the privilege of our car. She flipped out. Cried, locked herself in bathroom, self harmed, told me that we make her want to kill herself. Told us that if eating is what gets her the car, she won't ever drive again. Now she took off on foot. 

My H firmly agrees with you - that she can't live here if she's not eating, and treating us so badly. I'm afraid to kick her out. I imagine her ending up in a flop house doing heroin. I know it sounds dramatic, but when she's angry, she makes horrific choices, and this is my greatest fear. Or being with a guy who ends up abusing her. I want to keep her safe in our house. My H is probably right, but I'm so afraid to do it. We don't have supported living here, so she would likely be on the streets or with a family member or a loser friend who is involved in drugs already and making bad choices.  I'm so discouraged and broken and exhausted.

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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
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Reply with quote  #49 
HateED,

Have just caught up with this thread after being away from the forum for a couple of weeks.

Just reading 'when she's angry, she makes horrific choices'.

You possibly need to discuss this with her.  Sometimes when kids have mental health issues it is actually more helpful to be much more 'instructive' and openly teach what behaviours work and what don't.
Yes, she has an ed and eating and putting on weight will be frightening, possibly for many years to come.
But: she has to learn to treat others with respect (including her family) and that you are not the ones guilty of making her want to kill herself.

Tell her straight and without emotion that at times life for everyone is hard, but she has to learn to deal with it - threatening suicide is not helpful, self harm is not helpful, and she needs to understand that a fulfilling life is about having dreams but also contributing in some way.  She is young to want to do that, but you can give her the message.  Tell her straight that she is focusing too much on her suffering - she is actually CHOOSING to suffer - and how is she going to stop doing this?  What things can she do every day to make herself and her life feel better?

When our kids see how much their erratic behaviours throw us off course, we actually give those behaviours more power and hold.  Maybe trying to look as if she is not phasing you and that her behaviours are 'normal' for many adolescents as they move into adulthood will reassure her.  

Just a suggestion.  My own d, very much recovered, can still cry down the phone - I tell her in no uncertain terrms, she can take an antidepressant (which she knows works) or she can suffer.  She has to start making those decisions not me.
I know she is 25 but there has been a huge change over the past couple of years.  Keep telling your d that she is young, she is going through the dramatic changes in her body and brain of adolescence and this sometimes presents as severe illness.  But she will come through it all because you love her and you have confidence in her.
Hugs.  This is a long journey but you will get through.

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Theodore Roosevelt.
Torie

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Reply with quote  #50 
Ugh.  Sorry.

A while back you thought about one of the weeklong intensive programs.  Maybe that would help get everyone one the same page?

Thinking of you.  xx

-Torie

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