Harold,

The vast majority of anorexics recover. You would want to go to Las Vegas with the odds that your daughter will recover to a normal happy life.

Your firm, gentle resolve will make it so.

This is an epic struggle that you will win not a mere battle for a spoonful. You will have successes and set backs but ultimately you will prevail. Remember, there are millions of people that have recovered from this disease using all sorts of methods including Maudsley. You are doing the right thing. Follow your instincts.

What I have learned from others and my own anorexic 12 year old is that it takes time...... and  much patience.  Sometimes it will appear that you are losing when in fact you are inching ahead. Do not lose spirit.

I like cheforexic's analogy to Ghandi. 

You are an immovable mountain. Nutrition first. She will recover.

Harold, I want to second everything Cheforexic said. I've been to many treatment centers for anorexia, and the two that have helped most by far, is Johns Hopkins Eating and Weight Disorders program in Baltimore, MD and the OCD Institute (I have OCD too, and they treated my anorexia in the same way as my OCD) in Boston, MA. They do exactly as Cheforexic described. We *had* to eat. No option about it. We were given 45 minutes, and if we didn't finish in that amount of time (or if 5 minutes went by where we hadn't even made an effort) then we were taken to a private room to sit and eat with one of the nurses or techs. They wouldn't allow anybody to stay at the table if they weren't trying for five or more minutes, because it would start triggering others and cause them to struggle (though the OCD Institute was structured a little bit different because I was the only one there that had anorexia, but it was the same basic idea). All the girls and staff were extremely supportive and encouraging. The last time I was there, I was there for five months, and only about a third of us would ever have to be taken to another room during the meal, and even then, 95% of the time, we finished the meal before it was time for the next meal. In ten yrs., they said they've only had to tube feed three times. The reason you have to eat in the other room after 45 minutes if you haven't finished, was because during those 45 minutes, there are no other activities, visitors, phone calls or anything going on, but after the 45 minutes, those who finished, could start different activities. If somebody hadn't finished was still sitting there, it would be easy for them to distract themselves with others' conversations and so forth, rather than focusing on finishing the meal. Which I'm guessing is probably the same reason Cheforexic was saying they wouldn't turn on the TV, have phone calls, family over, etc. .

If you had to go to another room to finish, a nurse or tech was with you the entire time ... until you finished. No conversation would be had unless it was about eating. You didn't even go to therapy groups or meet with your doctor. At first I hated this. I saw it as very punitive, but really it wasn't. Everybody was nothing but supportive, it was just hard for me to see it that way initially. Plus, something that the program director said to me made a lot of sense - she said they're trying to symbolize on the unit what will happen in life ... if you don't eat, life (quite literally) stops.

Some anorexics are very passive in their resistance, and some can be quite aggressive. Then some, such as myself, try out both ways, depending on the approach being used with me. I think sometimes it's hard for parents to see their kids as manipulative or dishonest. The thing is, it's NOT your child that is, it's the ED. And believe me, it's many more things than just manipulative and dishonest.

I don't doubt your daughter is truly terrified, but she IS capable of eating an entire meal. However, if she knows you'll step down after a couple hours or after seeing how much it torments her, then there's no way her anorexia will let her eat.

Doing this out of the hospital is really the best thing, in my opinion, if it's possible. Even great hospitals, such as Johns Hopkins, have their negative sides. For instance, you'd be surprised the destructive things you can learn from the other patients, esp. ones that aren't really committed to getting well. I learned that if you dress light, even in the winter, no matter how cold you are, you'll burn more calories because it makes your body produce more energy to stay warm. I watched some other girls standing for hours on end, only sitting when a nurse would make them ... because you burn more calories standing than you do sitting ... so I started doing the same. Drinking water before getting weighed so it would appear you gained. Spreading butter into your palms like lotion so it'll appear you consumed it because your container will be empty. Tightening your muscles constantly, because nobody can see that kind of exercise. I went in with a certain set of fears, and learned 10 million more. The good thing about Hopkins is that it's a completely voluntary program. If they see people are continuing that kind of behavior and dishonesty after having been there for a while, they'll discharge them, for a few reasons: it's triggering and destructive behavior for themself and others; they're wasting their insurance days and may actually want to get better later and not have the days anymore; and they have a long waiting list usually of people who are really wanting the help. So typically, you don't hear or see those types of behaviors at Hopkins, but I was at enough other programs to become aware of far too many tips and tricks. Plus, no matter how hard any program tries, you're going to learn negative things because it's impossible to monitor every conversation 24/7.

Anyhow, after only a couple weeks of eating normally, the intensity of my fear over it would be quite a bit less (though the opposite is also true, unfortunately - after only a couple weeks of restricting, the anxiety intensifies dramatically). Getting the nutrition and facing the fear of the food is vital for recovery.

Right now, your daughter's disorder is convincing her that losing weight is THE most important thing. Possibly, the only way to get past the disorder and through to your daughter, is by proving to her that there really are other things she cares about too. Before I went inpatient last, it felt like losing weight was most important, but that was because I was able to keep everything else. Once my work told me they wanted me to take a medical leave, my friends stopped wanting to do things because they were too scared for my health to see me and not be able to do anything about it, I had to leave school because they said I wasn't stable ... I got admitted into the hospital ... and then I finally realized that there ARE things much more important. My family, friends, education, job ... ALL those things are way more important than my weight. Sometimes it takes losing things in order to realize they importance they have in your life.

Okay, sorry I'm rambling so much. I have a tendency to a lot .

All my best to you, your wife and daughter while you battle this. Stay hopeful. There are always solutions ... you have to just keep trying. Sometimes a different solution is needed or sometimes you just have to keep trying the same thing for a longer period.

For me, being the one re-fed, I always found that full meals right away was best, even though at the time I hated and objected to it. When I've had it done slowly before, each new item was a new traumatic event. It tooks several weeks to get me up to full meals and the whole process was exhausting. Only after being at full meals for a while, with no more increasing, did the anxiety eventually go down. The times when full meals were right away, I was resistent and anxious for a while, but much less time than the whole time I was during the gradual increase.

The only time gradual refeeding was more helpful was when I was being tube fed at the same time, because I knew I was getting all the calories whether it was by food or the tube. Initially, it was easier for me to get it through the tube, but finally I decided if I had to have the calories one way or another, I might as well eat them (then at least my body had to burn more calories to digest the food, lol). But when I didn't have the tube, and food was increased gradually, I knew each increase was an increase in calories. Whereas, when I had the tube, every increase in food was a decrease in the tube, so the calories stayed the same.

I'm glad things are progressing with your daughter. I'm sure she'll continue to do better .

Thank you very much, Coco. You are all wonderful and very caring.

I appreciate you all asking how I am, liking my posts and wishing me well in my recovery. It means a lot to me.

I'm going to be trying to get more help this next week so that I won't have to go inpatient again. I'm really nervous though. The whole weight gain issue is really hard for me, obviously. I'm sooo exhausted from dealing with this though.

I'm glad your niece is in stage two now. I hope the anorexic mindset is releasing its grips on her more and more each day.

Love,

Tara.

Harold,

Thank you, thank you for your efforts.  They are not in vain!  As we prepare to gear up for this we find it invaluable to hear all the stories and problem solving done to battle this relentless disease that grips our daughters.

Last night, in talking to our d about the grip (and she thinks she is doing well by still retricting - but not purging), she admitted that she likes how she looks, she has no desire to stop, but that she doesn't like how she feels.

We start with Maudsley in two weeks ( a long trip weekly for us) with Le Grange and team in Chicago.

The details, the heartache, the fear, and the victories, are so important to share...

Others NEED to know.  Can't imagine what families wanting and trying this treatment (Laura Collins!) went through without this forum. 

Keep em' coming all of u, please! Details are so helpful even if you think they aren't.

What about school situations?  What steps did you/your children's teachers do with you to work with this situation successfully?

God bless and thank you all again...and again...and again...

Hi, L and Whistler

After reading many threads on this forum and the website as well as other information, I informed my daughter that eating regularly (3 meals and snacks as needed) was primary for her.  I told her that if she was not able to make the proper choices in her life, that I would help her by doing it for her until she could.  Although she told me she did not care about her health or what happened to her, I told her that I cared and I would not allow her to ruin her health or her life.  She was not happy about what I said but at least she knows I care.

She ate today, but only half her breakfast.  I had another child to get to school, so we had to go.  She had half her sub sandwich at lunch and a cookie.  Today after school, my d was very grouchy--I hoped she would eat the snack I had out.  Well, she ate about a dozen Ritz crackers with cheese and some homemade cookies.  She stayed in the room after her snack and did not go hide.  She commented that the dinner I had cooking in the crockpot smelled good.  I hope these are good signs. I am taking it a day at a time.  I expect that tomorrow she will be giving me a hard time for everything.  I am ready if she gives me a hard time tomorrow.

I hope we are catching this early, I will not let my guard down for a minute.  Thank God for this forum--I would have been spinning in circles without it.  God bless us all. 

I feel terrible that I did not stick with forcing her to eat.  She is exhausted and so mentally worn out.  She just is not herself at all.  I am having a hard time getting through to her and getting her to eat today.

Laura

Thanks for the encouragement and reminders about this disease.  You think you are still dealing with your d, but it is something else, otherworldly almost.  

So many parents who have written their experiences and advice has been helpful.  I kept my d home from school today, in spite of the fact that she has midterms next week.  I took her cell phone and computer use until she eats; her friends are very important to her.  She had a huge outburst  (ignored) and I just told her that her dad and I were now in charge of her health and nutrition.  After she rested for a bit, she got up on her own and ate her breakfast. 

Thanks to all for their willingness to share their experiences.  You feel so alone in this; but knowing others are there for support and guidance is so crucial to staying with this. 

Thank you Harold for this thread. I appreciate the HUGE love you have for your daughter. I appreciate how involved you are in her life and her health. I appreciate your heroic struggles. I also appreciate that you've chosen to share them with others.

I thank cheforexic (although I do not understand your nickname) and Tara and Jane and everyone else who has posted. Reading your real-life experiences is invaluable. Thanks to Laura too whose book I have not yet read, but whose courage and initiative to write I admire.

Tonight I just found out about the Maudsley method. Last night we saw a psychologist for the first time who said for our next session, on Friday, we are to bring breakfast and we'll eat together. I was amazed and hopeful.

Last Thursday my 17 y-o d was hospitalized with uncontrollable shaking (2nd time in the ER, the first one was for being almost unconscious).  It really "shook" *me* to see her body doing something she wasn't controlling. The ER doctor couldn't say what it was ("of unknown origin" is what he put on the paperwork) but thought it related to her not eating and hypothesized that she was unconsciously trying to burn calories (it was large muscle group shaking, almost rocking her entire body).

Her doctor and her m had talked about IP and I was not so sure about it. However, after seeing her in the ER like that I thought it might be the thing she needed, especially since we had seen a nutritionist a few weeks ago who had told us about the re-feeding strategy. While we have tried, a lot is by phone "what have you eaten?" "what are you going to eat?" since I work quite a bit (and far away) and her mother (my x) is disabled. We are seeing her eating less and less, giving more and more excuses and starting to exercise after eating what she thinks is too much.

My d is very bright and has not hidden the problem and agrees that it is a problem, so that gives me great hope. It has only been going on for 6 or so months which means early onset and better chance of recovery as I understand it.

The doctor backed off from IP and said see the psychologist, which we did last night. Tonight I was speaking with my mother, who told me about an article in Town & Country (April 06) article on ED that mentioned Maudsley. A bit of internet research and viola here I am at this board.

Here are my concerns, fears and request for advice around "How to get a stubborn anorexic to eat?"

1) I am a firm believer that "it's not about the food."  I believe her anorexia is a symptom of underlying problems, one of them being low self-esteem.

If I in effect tell her I don't trust her to feed herself, doesn't that just perpetuate the underlying problem of low self-esteem? I guess the idea is to make the AN the piece that I do not trust, it seems difficult though to pry that apart from not trusting my d.

2) She is 17, almost 18. There is not much I feel I can withhold from her. I think she might just say "sorry, I'm not eating" and if it comes down to an argument she can always just leave the house. I do provide the roof over her head but that's not something I'm willing to take away from her. What can I do? Anyone here dealt with older teens?

3) Her m has raised her as a strong-willed child and rarely set limits and boundaries. My d has always had a way out. Although her m is willing to cooperate with the re-feeding, I am afraid it may be too late to start setting limits now. Do you think it's too late?

4) I hate to say this, but her m is a mess. I feel she is emotionally abusive (that's why I had to separate) and hugely controlling. She means well but has passed on a lot of pain I'm sure she went through. She gets into big fights with my d (and I know what they are like). She is willing to be part of the re-feeding, which I appreciate. However, I am concerned that my d will see the re-feeding as just more manipulation and rebel even more. Are there cases were Maudsley isn't the best fit?

All in all I love my daughter with all my heart. The day she was born was the best day of my life and I am willing to do *anything* for her. Thanks for listening.

Yellow,

I agree with all that the others have said so far with a couple of additional observations:

1.  I don't think the uncontrollable shaking was an "unconscious" attempt to burn calories.  I think it was your d's body's attempt to raise her body temperature.  One of the consequences of starvation is a lower body temp.  One of the body's known responses to a low body temp is to shiver or shake.  It happened to my d both before and during the AN.

2.  Your d is going to need a lot of loving support to regain her health wherever it occurs.  If you have concerns about whether her m can provide that kind of support, you might have to consider whether you can be her primary source of report.  Helping our d regain her weight and her psychological health was the most difficult thing our family has ever done, and in our case, it took both parents doing it full time, plus a loving and devoted aunt who was available at all times.  My h took 6 weeks off from work to help with the daily task of refeeding, then went back to work part-time for a couple of months.  Gather whatever resources you can.  As someone else has already said, it's helpful to think of the situation as being analogous to cancer -- you would do whatever it takes.  One of our d's doctors said AN is like leukemia -- if left untreated, both are terminal illnesses.

3.  Everything will be easier for you and your d's mother if you can separate the AN from your d.  Fight the AN that is in control of your d and threatening her life.  Love and support your d in fighting something that she probably cannot understand right now and may not be able to choose to fight.

4.  Once your d can maintain a healthy weight, most of the behavior and psychological symptoms (anxiety, depression, ocd) of starvation will begin to wane and resolve themselves for the most part (see Minnesota Starvation Study and Soederstam interview in the research articles).  This can take 3 to 6 months of weight maintenance AFTER achieving a healthy weight as the brain heals itself with adequate nutrition.

5.  There is HOPE for your d's recovery with family-supported treatment, and there is always SUPPORT here for parents engaged in that monumental struggle to save their child's life.

Thank you Laura, Worried Mom, dooger, Susan.

Writing down my concerns was the start of answering them for myself. I read the starvation study you suggested and I see the point. Right now it *is* about the food even if that's not how it started or what will get treated later.

I've ordered "How to Help Your Teenager Beat an Eating Disorder" and just got "When Your Child Has an Eating Disorder" which I had ordered before I heard about Maudsley.

Tomorrow we see the psychologist for breakfast. This evening I decided to have a frank conversation with my d. Told her of my fears.  That she would go away. She said she has nowhere to go. I told her my biggest fear if she walks out is that she would go to the streets. She assured me she doesn't want to do that. I am glad I talked to her calmly before the storm.

I told her I am not okay with her not eating. I told her I trust her but not the ED. Told her that no matter what struggles we go through that I love her.

We'll see how tomorrow goes. Thanks again.

Hi, I'm new to the board and not sure how to start a thread but here is a try.  Our athletic 13 yo d's AN seems to have been triggered by a poor soccer season and a desire to get stronger.  It has her in its grips now and we are struggling in Stage 2 of the Maudsley approach.  Her top healthy weight was about 104 and she has been hovering between 84-88 for several weeks now.  Her hostility toward us is quite overwhelming us.  We are trying to get her up to weight for counseling.

Recently after two successive days of blow ups at the table taking 3 hours to eat, my wife and I were simply exhausted and did not follow the 'rules' the next day.  She was allowed to eat whatever she wanted and of course she ate absolutely nothing, though we did have a good talk that afternoon.  Has anyone out there had this kind of a relapse and do you have any recommendations on how to come back from this into regular meals again?

After 4 weeks, we may already be at a decision point to (1) put her in the DC childrens hospital under the care of a Maudsley team, (2) start over at home with the Maudsley approach with occassional breaks provided by our married daughter, (3) possibly work out a caring situation with our married daughter for a few weeks to get her up to weight.  The doctor at Children's was ready to admit her the first day he saw her but our d said she would try her best and she has done fairly well up till now.   It sounds like keeping her at home is the best but we just don't know if we can continue to do it.  Your thoughts on this decision?

We understand this is the struggle in stage 2, but we are already near the end of our energy and in a constant battle with her to eat.

Robert

Thank you very much, Coco. You are all wonderful and very caring.

I appreciate you all asking how I am, liking my posts and wishing me well in my recovery. It means a lot to me.

I'm going to be trying to get more help this next week so that I won't have to go inpatient again. I'm really nervous though. The whole weight gain issue is really hard for me, obviously. I'm sooo exhausted from dealing with this though.

I'm glad your niece is in stage two now. I hope the anorexic mindset is releasing its grips on her more and more each day.

Love,

Tara.