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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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LauraCollins_US
Welcome to the forum!

This thread is here to help new users get to know the forum participants and for longtime members to continually update their stories. Of all the things that parents ask for when their child is diagnosed with an eating disorder the most common request is: "Is there a situation like mine? Did it come out okay?"

Please post your story here, using the following guidelines:
  • Include the basics like age and diagnosis and what part of the world you live in.
  • Make it chronological, starting with first signs and ending with where you are now.
  • Make it short. Readers can click on your name to get more details and see your other posts.
  • Please do NOT respond to the posts on this thread. If you see something you  want to comment on or ask questions about, start a new "thread" with the "NEW POST" button.
  • Come back periodically and update your introduction. You and only you can see or use the "edit" button on your posts.
Special extra thanks to member Louie for starting this thread idea and nurturing it!
Laura (Collins) Lyster-Mensh
F.E.A.S.T. Executive Director
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LauraCollins_US

Hello, all!

 

We are an American family of mom and dad and two kids. Our daughter developed anorexia nervosa at age 14 in 2002. We found our local resources for treatment rather passive and ineffective. After a few months we learned about the Family-Based Maudsley approach and we put together a plan and a team to do that. She recovered and went back to normal life. I, however, was deeply moved by the lack of resources and evidence-based help for families and wrote a book about our experience to raise awareness. My daughter suffered a relapse after her first year in college and our family again adopted a family-centeredsupport network with her and she took a brief time off from school to take ownership of her health. She fully recovered and continues to thrive. Her father and I are immensely proud of her!

 

After my daughter's initial recovery Ibecame a full-time activist on this topic and this forum and F.E.A.S.T. are two things that have come out of that. For anyone looking for hope and reason for optimism I want to share with you that things are SO MUCH better now in terms of public information and treatment options. Things are really moving forward and this community is part of that.

 

One way you help other parents is to tell your stories!

Laura (Collins) Lyster-Mensh
F.E.A.S.T. Executive Director
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Louie

My D’s Ed journey. D diagnosis is Restrictive Anorexia Nervosa, we are a family of 4 and live in Australia.

Nov ’08 – I notice our 14 year old D is more anxious than usual and has lost weight, she is eating well at home. She is antisocial and doesn’t talk with her friends much and is vague and depressed. I start her on a multivitamin. I find out she hasn’t been eating at school. She has a little OCD.

Dec ’08 – I realize she has Restrictive AN and start learning as much as I can. I take her to see a GP, he is clueless about ED’s…but I don’t know enough to realize this. We can’t get a T’s appointment for months. I sleep next to her…I am scared.

Jan ’09 – She is fading away before my eyes, I can’t get T support. She is eating 3 meals, but I am not pushing her for fear she won’t eat at all. I start her on one glass of sustagen a day. I am frantic with worry and yell at the GP receptionist to get the Dr. to push for a fourth referral or I will have to get D hospitalized myself. GP sees us next morning, she is shocked and frightened by D’s health. D’s BMI is 12,  her ECG is very scary, no BP can be found, her pulse is very slow. We head off to an emergency appointment with a adolescent ED T that pm. at an inpatient facility. It is not possible to get blood samples from her….her BP is too low. I am terrified but calm and hyper alert.

Jan 22nd ’09 – T’s is fantastic, he lets me nurse her at home because I used to be an RN and I have been apparently doing well so far, well she is eating. I am calm, he gives me direction, he is watchful, the clinic is full, he hopes he is right in his assessment of me. D is scared, she knows she is close to death.

We start Magic Plate - 3 meals (including feared foods), 3 snacks, 1 litre of sustagen, multivitamin, 6000mg of fish oil….she is to be “Rest in Bed” for at least 5weeks….only toilet and shower privileges.

Feb, March ’09 – We see T every week, D puts on 1kg a week, she is compliant but it is very slow sometimes two hours for a meal, she is depressed, very flat….she obsessively draws the most exquisite artwork, she is unable to start school this year. I take time off work or get my husband or Mum to be with her if I have to go out. I spend a lot of time on the web learning all I can….I find FEAST and the forum, I watch and learn for a month, like Louie the fly…sitting on the wall, watching the world go by.

D is prescribed anti psychotics and antidepressants. OCD rituals have become all consuming, she still can’t touch the utensils or glass, (they may have food on them)…we are in big trouble. I spoonfeed her, she eats, because ED knows I am stronger. We see a Nutritionist  - he gives us a meal plan, he doesn’t understand OCD.

April ’09 – We see T every two weeks. D can’t touch anything with her hands, she is obsessed with tissue, napkins and washing hands and lips. I lock a bathroom up with all the soap products in it. I write down a list of her OCD for the T, and there are over 30 rituals. I start her on a Probiotic, Evening Primrose Oil, Inositol, Pre-gaba, Inkephalin and S.A.D, (both of which have D1-Phenylalanine, Tryptophan, Glutamine, Vit B6, Vit B3, Magnesium and Zinc)after consulting with a chemist,Natropath, GP and ED T.

May ’09 – weight gain is slowing, I step up the refeeding, D gets angry, she is exercising a bit. I am still feeding her myself. She starts hitting her head against the wall and hitting herself in frustration and fear, she runs off out of the house at times. I get stronger and angry myself…I know I am scared. H really doesn’t get what is happening in our house and hides in the office all day. T comes down hard on D, he threatens her with hospital, he tells her I am doing the right thing. Meds get doubled to correct dose. Thank God for ATDT. I hate what is happening to us.

May 24th – I have seen a program about OCD that is linked on ATDT, I have a plan. I force D to touch the fork, I force her to put the food in her mouth, it is not a pretty scene, but it works. She knows I mean business, I am fed up with ED and OCD. She eats by herself. I battle with her, but she does it. She is very closely supervised during and after meals as usual. We see T every month.

June ’09 – 3kg’s away from WR, D comes in and says she feels different, like a cloud is lifting. She starts caring about how she looks, and lets others touch her. I put a time limit on her meals (30min) and snacks (15 min), with extra shake if she goes over…it works very well. D starts separating ED from herself, she is sick of being sick.

July ’09 – D turns 15, her ED and OCD almost disappear when she is at work with me.

She starts back at school, she copes with the anxiety by verbalizing and keeping busy. I go into the school and sit with her for all snacks and meals. Her OCD is reducing by the day. She goes into a grocery store and helps shop for food…she is thrilled. She starts being more social with her peers.

Aug ’09 – D is WR finally. BMI of 19 (which I think is too low, T tells me not to be greedy).

Sept ’09 – she still doesn’t want to eat, but it is easier at the table. We go on holidays and the change is good for her, the OCD and ED fade a little every day. T reduces the meds.

D is reduced to 1 or 2 sustagen a day, depending on activity level.

Oct ’09 – I further research the skin antibiotic D has been on for severe acne and see that anorexia is a possible side effect. I take her off it, even though 7 people who should know what they are talking about say…don’t worry. D starts with a Clinical Psychologist to help with anxiety and OCD….they click…

I find out the antibiotic has indeed been breaking down essential amino acids in D gut and could have been a trigger for ED. I take her off most of the supps. And give her a half dose of Vital Greens which has almost everything she needs in it, except the fish oil.

D suddenly says she is hungry, she is notably happier, she is able to control most of her OCD, she eats without much prompting. She asks for fav foods, her walk is lighter and she laughs.

Nov ’09 – D is very hungry, she is behaving well. She is almost back to normal. She is closely supervised still. She gets her own food, she starts cooking again. Her acne is severe. She tells me she loved the yummy food I gave her during refeeding.

Dec ’09 – D’s period resumes.

Jan, Feb ’10 – Back at school, eating unsupervised, and weight has been pushed up two more kg’s, BMI 20, she is fine unless stressed and hungry and tired, no sustagen now. She still relies on me to watch over her, but she is doing well. Her period is regular so far. Weight stable. Acne is under control. 

March '10 - D had an exam block week, a weekend away without me and her acne is terrible again. The stress of it all and the added need for more calories meant her ED has flared up again. She is eating really well. Lets hope we can get through this ASAP, back to refeeding, and pushing her weight up with her blessing.
May '10 - D weight is stable, her state of mind is great. She has started on Roaccutane for her severe acne, we are hopeful. No sign of ed for ages.
July '10 - D weight is up another 2kgs. BMI 21. Her mood is more stable and anxiety in control, she is more social and she is winning awards for her school work. Her skin is very much improved and no ED at all. We are thrilled with her progress.
Dec '10 - D weight is stable. We have her anxiety under control. I can safely say, she has never been so well in her whole life. She is thriving. Her future is bright.
March '11 - D just keeps getting better and better, calmer, more balanced, no acne and has finished a long course of Roaccutane. No ED at all. 
May '12 - No ED. D has been diagnosed with Poly Cystic Ovary Syndrome, Depression and thyroid levels that are up one day and down the next. Her OCD is still there. Course of action is contraceptive pill, anti-depressants, keep an eye on thyroid levels and some therapy with Psychologist she knows to assist with the OCD. After a month of meds, she is happier and motivated, not continually combative and is able to see a future for herself. Her self image is improving every day.
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ruralmomUSA
Here's our story:

We are a family of 4 from the U.S.  Before AN we thought we were a fairly "normal" family, immensely enjoying watching our 2 d's grow into wonderful young women. 

Age 13:  D becomes vegetarian.  We don't think about it too much as my H and I were vegetarian at one point and have other family members who are vegetarian.    D a beautiful dancer and begins dancing 5/6 days per week, sometimes 2 times per day.  Despite never showing an interest in running, d joins track team.

Age 14: D begins to eat a more "healthy" diet.  Within about 3 months we see this is spiraling out of control as she's limiting herself to foods with virtually no calories despite her activity level.  H takes d to doctor  and mentions our worry. Doctor says she's fine and hands d info on nutrition (full of low fat/low calorie suggestions).  Within 3 weeks d loses 12 pounds and now weighs 88 pounds at 5'2" She's hardly eating anything and is in constant movement.   H and I are in a panic. We confront d with no effect (she calls us crazy and storms off).  I take d to doctor and doctor says, "It's a diet gone bad. Don't worry it will turn around."  In the meantime d loses 2 more pounds.    Doctor refers us to a nutritionist who, to my surprise, sees us almost immediately and tells me d has anorexia and there's no time to lose. She also says we need to get her to eat, regardless of how we do it.  Thank goodness for this nutritionist - she's never heard of FBT but has a natural  
instinct.  I immediately start researching the internet and a friend helps me find info. We both stumble on Maudsley parents, ATDT and Laura's book.  I also start calling professionals out of state.  Although we live across the country, they provide lots of phone support and information.  H and I start refeeding on our own with phone support and our local nutritionist. Our doctor is recommending residential placement, even though we desperately want her home with us.  At some point,  one out-of-state professional warns me about refeeding syndrome (something our doctor never mentioned) and we end up in Urgent Care for emergency blood work. The attending physician has a friend, also a physician, who has some experience.  The attending physician gets info from her friend on needed medical tests - EKG, blood work, etc. We start seeing the more knowledgeable physician weekly.   D starts individual therapy but I realize it's going no where and actually thwarting our home efforts(therapist is a recovered anorexic and the sessions feel more like two anorexics sharing their secrets). We ditch the therapist and have no luck finding anyone who will work with us as a family. 
 
15 years old:  We struggle at doing this alone, without truly expert advice.  At this point, I've quit my job and am fighting ED full time, but on the verge of falling apart myself.    Attend UCSD's intensive family treatment where we are given more tools and lots of support.  D does well, we begin fading back per the treatment plan. Life seems a little more normal. 

16/17 years old:  We seem to be in a pattern of giving D more independence, followed by weight loss, followed by us intervening and taking control again.  Feel like we need some support again.  Return to UCSD for a 2-day follow-up,  plan is revised, d is much more engaged and wanting recovery. Finally, d is on the same team with us.  

Currently, we are seeing our local nutritionist and traveling out of state monthly to see a therapist who is up to date on current research in the field, works with our whole family and has given d hope she can recover.  D is making progress by leaps and bounds.

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midwestblues

Our story begins in the summer of 2008 when my son was 10 years old. He was always a big kid and strong in sports. He had always been above the 100 percentile for height and weight. He loved playing just about every sport and was constantly praised for his talents. In the summer of 08, he decided to start eating healthy. He would eat salads and more vegeatables then before. We all thought this was great, a 10 year old trying to eat "healthy". He had been into exercising for about a year but that summer, he started to run and do pushup and pull ups with a higher intensity then ever before. All this stuff seemed great and healthy at the time. As the summer moved in Fall, he continued to exercise and eat more salad and less "normal" food. He also started to resitrict his eating (not eating lunch at school - we only learned this later). IN addition, he started to exhibite some OCD behaivors. He became focused on "lucky" numbers and talked about them alot. He would also feel compelled to touch the clocks when the two clocks in our kitchen would hit :11. We all thought this stuff was just goofy childhood fun. In December, our peditrician noticed that while our son was still above the 100 percentile for height, he was now below the 50th percentile for weight. In addition, he had not grown much in the last 6 months. She told us that she wanted him to try and gain a little weight and come back in 8 weeks. She did not make a big deal about this but seemed concerned that his growth had stalled. We went home and gently encourged him to eat a little bit more. After about 6 weeks, it became clear that the harder we pushed him, the less success we were having. We went back to the doctor 2 weeks before our schedule appointment. She stated that he had not gained any weight, or loos any weight for that matter but she wanted him to work with a nutritionist and see a therapist. We were now getting pretty concerned and started pushing hard for him to eat more. He saw the nutritionist and we scheduled a therapist meeting. The nutritionist put him on a meal plan which we tried to force him to follow. Again, the harder we pushed, the harder it was for him to eat. The next week was a week from hell. He went from eating about 1500 calories a day, down to eating almost nothing. We would sit with him for hours to force him to eat. This was also a week the kids were off school so we were focused on getting him to eat all day. By the end of the week, he couldn't eat anything and started to curse at us, told us he hated us, threw and broke things and worst of all, started hitting his head on the table and walls. he also saw a therapist for the first time this week and she encourged us to keep trying. Finally, we went back to the doctor at the end of the week and he had last almost 10 lbs in about 10 days. He was down to 84 lbs. She recommended inpatient. We got him admitted to Princton Eating Disorder Unit which is about 120 miles from our house. He was in-patient there for the next 42 days. During that time, my wife and I would take turns driving down to the hospital every day to visit him. this was a very sad and tough time. He really struggled for the first 4 weeks. He really wanted to get better but couldn't figure out how to eat again. Also, his stomach hurt when ever he ate. Lucky for us, he did not seem to have any body image issues. Some of the other patients (almost all girls and women older then him) adopted my son and really helped him to eat. They would take turns sitting with him for hours and encourged him to eat. He was slowly able to increase his calorie intake. After about 4 weeks he had finally gained enought weight to get a weekend pass. We were to take him out for fun activities but also make him eat pre planned meals. Our first meal with at TGIFridays. He was to eat a hamburger. When we got our food, he just sat there and looked at it. After 30 minutes, I told him he had to eat or we were going back to the hospital. He started to cry and said he couldn't do it. I went up to the bar to pay and he finally started to eat. He was able to get it down! Finally, a win. The rest of the day went ok and he returned to the unit. The next day, we spend the day doing some fun stuff and in the evening, as we were walking back to the car, he just bolted. He took off across a busy street and just tried to run away. I was able to catch him after about a 1/4 of a mile and when I did he just begged me to not take him back to the hospital. We both just dropped and cried for the next 10 minutes. We returned him to the hospital and I think this was the low point for me.

The next weekend he again got a pass after doing good all week. We went to a little pizza place and he ordered a cherry soda to have with his pizza. For the first time, he said, "boy, this tastes good" about the cherry soda. This was the turning point. Food started to taste good again. From this point on, he just started eating again like a switch got flipped in his head. Another 10 days inpatient and he was told he could go to outpatient. He was now 104 lbs, still about 8 lbs below his target weight. He then did 3 weeks of out patient treatment 3 days a week. On the days he was not in treatment, he returned to school. He had no problem with us telling people about his problem so that when he return to school, everyone was happy to see him and was very supportive. After out patient, he started to see a therapist 2 times a week and our family saw a different therapist once a week. These appointments have been reduced over time. He still sees his therapist 2 times a month and we do family counseling once a month. Just recently he weighed in at 127 lbs and had grown almost 6 inches since hospitalization. He has no issues with food at all and eats normally. All the OCD behaviors have also disappeared. He is back in sports again and even did wrestling agian this winter season (the therapist thougth it was ok if he wanted to do it, my wife and I were very concerned but went along). he had no issue with the weight focus of wrestling and even after not doing very well because of being in a heavier weight class, he was fine with it. To my wife and my relief, he does not think we wants to do wrestling anymore (his choice!). Long story but my son is now 12 years old and healthy. Fully weight restored, eating normally and growing strongly. No more obsession with excercise and n more OCD. We will continue with therapy (I see no reason to stop till college) and be watchful and any slids back toward illness. Thanks for all the support I gained by reading this board. I cry and pray for you all as I read the stories of those still struggling. My message to you all is that you can beat this illness. Your child can and will get better. Don't quit doing what you know is right. Good luck and I will continue to keep you all in my prayers. Eric

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EB
My, then, 16 year old daughter was diagnosed with anorexia late February 2008.  She weighed 42kg (92lbs) at a height of 5'5, her hair was falling out, she was cold all the time, miserable, irritable, exercising too much, minimising her food intake, worrying because she thought about food ALL the time, and obviously not well.  I was shocked at her diagnosis, accepted it as a technical fact but didn't have any notion of what it meant and thought that I could 'fix' this pretty quickly.  Her route in?  Trying to be "healthy" and eat low GI type foods, exercise to reduce the size of her thighs and us, her family, living with her, not noticing as one red flag after another was flying full in our faces - why would we, we had no experience and we weren't looking for them.

I found this forum and discounted all other internet information (it was scaring the life out of me!).  This forum came with the word 'Maudsley', which, being from the UK, I trusted, and so I sat down and started reading.  It didn't all fit for me at first, it seemed predominantly American and I knew that some of the parents here would tell me stuff I didn't want to hear, would tell me to do things I didn't think that I was capable of (at this stage it was still "I", I was trying to manage this on my own without the complication of other people's worries or potential reactions - definitely NOT to be recommended).  I kept reading and finally started writing and asking questions and from that day on felt supported; we were not alone in this, others had done this before us and got their children well.

I thought at this stage that we would get d well in a matter of weeks/months; I was wrong.  It took us a LONG time with many many ups and downs (more downs than ups for the first year).  We made great strides in gaining some weight back to begin with only to remain bobbing up and down at this slightly less than optimal point for ages and ages and ages.  After about a year I found myself on the point of despair - maybe this was never going to work for us.  We had dealt with all the usual an stuff for a long time, the family was suffering, holidays were a nightmare to be endured rather than a pleasure to anticipate, daily life was hell.  We were lucky to have found good medical help and this forum kept propping us up and sending us back to do more battle, refreshed and better armed and with the plan tweaked and ready to try again.

D's battle was further complicated by a long-term, malicious and machiavellian bullying campaign carried out by her former best friend at school (still going on to this day although, while still not without impact, not able to do the same level of damage) and d's anorexia now encompassed severe depression.

Still not sure what made the difference, but slowly but surely d got better.  Her weight went up, marginally, periods returned and d started shedding her symptoms one by one.  It all happened in a tumble at the beginning of last summer (16 months or thereabouts post dx).  She is now much happier, not afraid of the food, doesn't feel the need to exercise or be constantly moving, can get on a weighing scale (or, glory of glory, NOT get on a weighing scale) without it unhingeing all of us, has regular periods, is doing well in school but not moved to work harder than she needs to, and is looking forward to next year and university and we are able to look forward to it with her.

We are still a little cautious; I still watch over her food, so very conscious that a little weight loss is all it would take for a relapse, and the depression still comes and goes (although is much better recently).  We still see our ed specialist psychiatrist but no therapists or dieticians or others at this stage.

Sorry, have tried to give a 'potted' version but it's still too long and there is so much more I could add!  Hope that some of it might help someone know that they are not alone and there is real hope.
Erica, UK
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pennysgirlUSA
Our family resides in the U.S. and consists of myself and my H, his two kids from his first marriage (older D who is now married) and S  who lives with both us and his natural Mom, and our two D’s age 15 and 10. My first 'heads up' that my D could have an ED lurking in her was when she was around 8. I made some mention to my H regarding calories and cutting back (not necessarily about her) and she overheard and right away wanted to know if she was eating was too much, etc and I told her she misunderstood what I said to H and backed my way out of the conversation, repeated to her that she didn't have a thing to worry about, and dropped the subject. I knew then that she was the obsessive type and to never criticize how much or what she was eating. She was healthy and that was the main focus from then on. I don't diet... ever, but my H has battled weight trouble his whole adult life and has dieted his way into lousy metabolism. 



D was 12 and at a sleepover and they talked about dieting. She tells the girls that I would never let her go on a diet b/c I feared she could be the type to get an ED. One of the girls (who didn't know her) said right to her face: "you??? you could NEVER get an ED!" and laughed at her. D had an appropriate little tummy at that time... she was developing young and taking the shape of a woman's body. (I didn't know about this story till we were in recovery.) 

A few months later, she was sick (with what I now believe was mononucleosis) and didn't have much of an appetite. Because she was totally phobic about vomiting, I didn't push her to eat. For about a week she ate very little. When her appetite returned she seemed to eat normally and everything she used to eat. Some weight loss occurred in that time and people noticed. All summer she continued to lose weight, but she didn't stop eating any of her favorite foods, she just ate less at certain times - family parties she ate less then usual (she normally had a really hardy appetite,) but didn't at all appear to restrict (maybe ate one hamburger instead of two.) By the end of the summer we saw at the doc's office that she had lost 30 pounds in 5 months! 

Ding Ding Ding! She heard the numbers... the ED liked it and I suppose this is when the real illness set in. 



She now started thinking and obsessing more about food and actively restricting. I mentioned to one of our family GPs that I was concerned about her - still losing weight (total weight loss around 35 pounds by now.) Instead of recognizing the signs of AN, the GP inasmuch challenged her to keep the weight off, and instructed her not to lose more than another couple pounds. She just about cried… and then she hardened... and I believe this was the point that I really lost her. 

Subsequent appt’s at the Dr office for normal stuff drew no concern from the GP over her weight b/c she was in a safe BMI range.

I somehow kept going with D... encouraging her to eat more than what she was...and telling my H how worried I was... he figured I was worrying too much. I sounded like a nag I suppose. D's attitude was really lousy with me. I thought it was normal teenage stuff. She stopped getting her period and the Dr wanted to put her on birth control... I say no (whew!)



A whole year since she took ill, and now she joined the track team. I am proud that she is part of a team sport and hoping she has found a niche to help her feel good about herself control her weight so that she can eat and feel good… but this backfires.  She skips breakfast most of the time or has a yogurt and was throwing away the ‘power’ bars she was bringing for lunch. (I found out later.) I tell her coaches I would like them to encourage the team to eat a snack before they run... that I am worried about her in particular. 

They don’t say anything. 
S and older D have now come to me separately with concerns. Then S finds in computer history that D was on yahoo answers giving advice to people about tricks to become AN and how to restrict. I pick her up from school that day. I am in tears as we drive straight to the GP office. He confirms it is time to take action. But he doesn't have anyone to send me to... no information to give me. 



Insurance company recommends the first T. She fails. We have wasted another month. No one tells me to feed D. I am allowing her to make a snack mix and this is all she eats. The first T had told me "never stop an AN person from eating" but D is starting to binge on combination of trail mix, mini cookies, dried fruit. She gains some weight but has stomach problems. My common sense tells me to stop this strange eating and insist on normal food. I learn about Maudsley (a little.) I try one day on my own (sit with her... we aren't leaving till you eat.) She eats. 
I am not diligent in this method, but she is eating enough that another month goes by (I am waiting to get a visit with the new second T I find - supposedly a specialist with ED.) D's period returns, though! Yayyyy!



We start to see the new second T. She looks for reasons why D won't eat. She says D is not AN (weight not low enough.) I ask should I get up with her in the morning and make sure she eats breakfast. She tells me to let D decide when and what to eat. Recommends books for both of us. (Nothing about Maudsley) I ask about Maudsley... no comments just that yes, it is a method some people use. She sees D separately from me. I don't know what is happening. D is angry with me right after visits but otherwise she is okay. I run around town trying to please D by getting her smoothies to drink. She tells me one day that the smoothies are prob. saving her life!!!! I talk to her T. She tells D that if she gets below 120lbs (a 40 lb total loss) then I would be taking over feeding her. (I had her over 130 before we started seeing this T) We went for the last visit with this T on Nov. 1st, 2008. D's weight dropped another 8 pounds since the visit before and she weighs 114. All the T says is to take D to an IP facility. Here is the brochure.

 The facility is in another state... D is 14 years old!!!  
What happened to me taking over???
 So that's all there is?

 

Thankfully that is not all there was. I had started to re-feed D on my own for a few days when I found ATDT and FEAST and Laura and everyone here. This was the turn around point and the beginning of recovery. D was w/r in 2-3 months.

After a solid 6 months of w/r, D’s weight gain leveled off. She had continued to gain even after w/r due to hunger. I felt it was important to satisfy her hunger, but there was no overeating or bingeing at all. I stayed watchful. Her period had returned after a month of refeeding and her hormones raged all this time, like in early puberty. At this point they seemed to stop raging and her body seemed to trust that it would get enough food. She dropped a couple pounds, then a couple more. After diligence, she gained a couple back and I believe is settled (for now at least.) 

Where we are now:
 We have a wonderful T that was recommended here, ATDT. D has now been w/r for well over a year. We are somewhere between stage 2 and 3, with moments of stage 1 every now and then. D still hears ED, but not all the time. She eats, but wants reassurance. She will be 16 in June. I have time to get her ready for college and independence. I have a plan and long term and short term goals. I can see where to go and how to get there... but it is up to D to be able to see the path too... so we are working hard still, but we are both on the same side! I thank God everyday for this site and all of the support here!


"But those that hope in the Lord will renew their strength..."
Isaiah 40:31
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Christopher

Our daughter developed anorexia nervosa four years ago, at the age of 16. She was ill for about two years, beat the illness, and is now living a happy and healthy life. For the first several months after the diagnosis, we spun our wheels, finding it very difficult to find evidence-based information on effective treatments. Eventually we learned that the effects of semi-starvation on the brain are serious but reversible with full nutrition. We altered the treatment strategy away from trying to uncover causes and focused instead on persistent refeeding, weight restoration, and normalization of eating patterns. That approach required time, patience, and perseverance, but it worked.
I remain on the forum to try to help other parents when possible. I am also an advocate for a more scientific, evidence-based approach to the diagnosis and treatment of clinical eating disorders. I'm inspired by the dedication and love shown by so many of you parents and proud to be part of this community.
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Colleen

My 16yo d stepped on a scale in Feb 2008 and decided to lose a few pounds.  That's it.  She participated in World Vision's 30-hour famine around the same time; how much one had to do with the other is vague.  She simply stopped eating.

We noticed the weight loss, but she claimed to be 'eating healthy'.  By the time we found out what was going on, she had lost about 33 lbs in 3 months and ended up in the hospital for medical stabilization (May 2008).  Refeeding started there, and we continued at home.  At 3000-3500 cal/day, she gained about 2 lbs/week.  She was--let's say--resistant.

Her recovery took a strange turn in August 2008, when d was about 5-10 lbs from her target range.  Her RD did a body composition test and shared the results (and her opinions about the speed of weight gain) with d.  My d heard this as "I'm fat, Mom is making me fat, and she is going against the advice of our professionals to make me fat.  Mom is evil."  After that, she refused to eat for us.  Completely.  She managed to continue gaining weight and reached her IBW in mid-Sept 2008.  Her issues around food seemed to be over.  She ate freely and intuitively as she did before.  Food has not been an issue ever since.

But her mental state was still terrible.  She continued doing well at school during her senior year and working part time.  To the outside world she looked fine.  At home she was a completely different person: angry, vicious, vile.  Her rage was directed at me.  It was so irrational and resistant to treatment that I can only call it 'emotional AN'.  She didn't speak to me or allow me to touch her for over a year.  Our family life was unbearable.

It has been a hard road to break down this kind of AN.  We are truly in therapeutic no-man's land.  My persistent reaching out in kindness and love (in spite of the constant hatred and rejection)--along with giving my d 'no choice' but to interact with me, a la Magic List--has worn out AN like water on stone.

Currently, d is a freshman at university and is doing incredibly well, both academically and emotionally.  She maintains her normal weight--that's the easy part.  Emotionally, she is getting better all the time, with a lot of structure.  She's so happy!  The past six weeks have seen a dramatic improvement.  She is finally on board with reaching back to me!

I'm so proud of her.

And I'm also proud of me.  I'm pretty darn impressed that I trusted my intuition about how to get her through this, and then had the strength to keep going.  It has been really hard to face the constant rejection from this girl I love so much.  I could NOT have done it without the support of my h, my pastor and especially ATDT.

When I look back at the help we've received, the very best advice has come from the wise parents on this forum.  None of our professionals warned us about the transformation of our d's personality--the whole exorcist thing.  Our original professionals told me the most important thing was to 'preserve the relationship at all costs.'  If I had only their advice, I'd have bailed out of the refeeding early on and my d would still be sick.

Other parents, hang in there!  The only way through is through.  I never thought I would spend the afternoon laughing with my d as I did this afternoon.  Life is good!!


Edited later to add:  My d was never at a dangerously low weight or BMI.   She is 5'11" and when she stepped on that scale, she weighed 165 lbs--which tracked exactly along her historic growth curve.  She dropped to 132 lbs (BMI=18).  She lost her period as soon as she lost the first few pounds.  She now weighs about 175 (BMI=24) and I believe she has grown another inch (5'12" )...although it could be the illusion of height due to the return of her thick curly mane of hair.  It's all good!

My point is that a sufferer does not need to be emaciated or a very low weight/BMI to be very ill.  (Although her bones were visible, her skin was taut and gray, and her heart rate dropped to <30 bpm, my d was never a shocking stick figure.)  Nor do they have to drop to some very low weight or BMI on some statistical chart.  She was at a low weight and a low BMI for her.  It made her very ill to be below her set point.

Parents, don't settle for a random number off a chart.  Make sure that your child's target weight is appropriate for your child!  That 50%-for-weight or 20 BMI is like one-size-fits-all.  In my family, as in Lake Woebegone, all the children are above average.

Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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homemakerx
We are a family of 4 2 boys, we put family and church first and thought we where living the American dream, when our oldest S was 11 my husband noticed him eating salads instead of french fries, that was April of 2007, we watched and payed attention, he was 118lbs and only 4'10, he was husky but very athletic, by June of 2007 he was down to 71lbs and would not eat anything or even swallow his saliva, he was put in the hospital at Stanford over 6xs from June, until Dec, the hardest thing was finding a Dr who knew enough about ED, but we had to fight for every bit of treatment we could get, because of the BMI chart he was where he needed to be, until we found a Dr who said he would be dead in a few days if he was not put in the hospital right away, there he learned just how to be a better anorexic, we tried every method, every counselor, every medicine, the breaking point was when he went below 60lbs, we sent him away to a residential treatment program, he spent 4mo there, and came home April of 2008, we fought to keep him at his target weight, we had him in an OP treatment facility through Kaiser in Sacramento Ca, which I give credit to finally getting him healthy, by Oct of 2009 he was weight restored, but not mentally restored, we are still dealing with that, he is angry about how we handled his treatment, and the fact that we sent him away, he had never been away except to church camp and unfortunately our naive son was exposed to kids from all back grounds, here we are in 2010 he is 14 and full of anger, he is no longer violent but instead of controlling ED he controls his behavior by rebelling, he is now smoking pot and cutting school, we are doing everything we can to safe him from this, we believe this is all caused from the ED, he refuses any kind of help or treatment, so each day is a battle for us, but we do get to see those old signs of his old self, that smile, a hug, a I love you, we take those and cherish what we get, I hope one day I can report that he has over come the battle with it all 
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nomoreed
This is my story....I am a single mother in New York City.  My daughter is 19 yrs. old.  She has been bingeing and purging for at least 2 years (according to her).  I knew something was wrong.  All the signs were there but I did not know what they meant.  My daughter was always a big girl and I never realized how unhappy that made her.  When my daughter and I joined the gym together and she started to lose weight I was very happy and so was she but she started out weighing 225 and within a year she was down to 100 and aiming for 85 pounds.  What I did not realize was that she was bingeing and purging starting her last year of high school and it became full blown her sophmore year in college and exercising had become excessive.  When D came home for Thanksgiving last year I did not recognize her, her roommate was with her and that's how I knew who she was but she was not the same person.  My d looked at me with such anger and hatred that for a moment I almost feared her.  Thanksgiving was AWFUL.  We fought constantly and I did not understand why.  Christmas was better but we were still fighting.  Finally d asked to see a therapist and I agreed.  She admitted to her eating disorder...she knew what her problem was.  She had done the research and infact she blogged about it for the past 2 years.  The only reason my D told me about her condition was that she frighthen herself when she looked into the mirror after purging and saw vomit and blood.  The T suggested after 2 visits more intensive therapy.  I made an appointment to have my D assessed at the Renfrew Treatment Center.  The Center initially suggested intensive in-patient treatment to which my D flipped out.  Instead the Treatment Center suggested out patient treatment.  It has been three weeks and I see some improvement in her weight.  She no longer looks skeletal (you could actually count her ribs).  So far the treatment seems to be working although eating meals has become difficult.  My D has also starting taking Prozac.  I am not happy about this but D insisted because of her depression and sudicial thoughts (again I had no clue).

There is more to come but my question is this.....is there anyone out there with experience with the Renfrew Center in New York and with their child taking Prozac?
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Annmarie
Hello,

I have a long story to share that I am going to consolidate.

I first came to this forum after my then 14 year old daughter was diagnosed with restrictive type anorexia in the summer of 2007. She was suffering for quite some time prior to this, close to two years. The first year of changes at age 12 were subtle, "healthy eating", elimination of junk food, a little less socializing, a little anxiety. The next year, age 13, was more extreme, weight loss to 100lbs, lack of period, refusal to put on weight, headaches, dizziness, stress fractures, refusal to recognize a problem, then more extreme weight loss in the spring of 2007.

In the summer of 2007 my daughter was hospitalized in an ed unit for 4 weeks, quickly put on weight, segued to a partial program, where the weight gain halted, was released and quickly began to lose weight. We were told to let her do this on her own, not to be the food police etc. etc. and that she may need to go in and out of the hospital a few times for this to work. (I still get angry every time I think of this.)

During this time I found the forum and learned of Maudsley. We started working with a Maudsley doctor in October of 2007. We were unsuccessful in refeeding at home and my daughter had two more hospitalizations in ed units as well as a few trips to the ER. Her last hospitalization was in February of 2008. Throughout this time we continued working with our Maudsley doctor with limited success. My daughter was maintaining her weight enough to stay out of the hospital but not enough to get well.

Emotionally she was getting worse and worse, so much so that we needed to get her somewhere safe where she could be properly cared for both emotionally and physically. In the summer of 2008, after a very long year (I'm sure many of you can imagine what transpired over this period) we turned to residential treatment. We never imagined we would go this route, but it became our only option.

First we went to Arizona for two months. My daughter improved somewhat emotionally, but not physically. We had her transferred to another residential program in Utah where she spent 9 months. During this time she came home a few times for transition. First 2 weeks, then 3 then 4. She has been home now since early June 2009 and is working with a traditional team of a medical doctor, dietician and therapist.

Now age 16, my daughter is back in high school as a junior. She was absent from school for two years, but academically she barely skipped a beat. She loves school and is getting back in the groove as a teenager. I mention this here to highlight the point that health must come first. School will catch up.

I emailed Laura a couple of months ago to say that my daughter was maintaining all the progress she made in residential and that she has been managing all of her food and exercise on her own. Since then she slipped a little with her weight. We (her team and my husband and I) are on top of this and holding her accountable, but I find that I am holding my breath. Anorexia is present and putting the weight back on is a challenge.

I keep hoping to have the final happy ending with a recovered daughter. I hope I can report that in the near future. Right now we are still on the journey but in a much better place.

What I've learned...

1. this forum is one of a kind and the information and support offered here cannot be found anywhere else

2. educate yourself - know your options - research your options

3. get support for yourself

4. trust your gut

5. never give up

6. If you can get a good treatment team on your side that supports Maudsley - do it. I wish we could have been successful with Maudsley. Sometimes I feel like I failed my daughter by taking the route that we did. The most important thing however is not to give up. Love your child, hate the illness.


One more thing I wanted to share...
As you all know, treatment can be financially crippling. We live in NJ which has a "Catastrophic Illness in Children Relief Fund Program" They have come to our aid. We also worked with our insurance company to stretch our coverage and went to my husband's employer for additional financial asistance. We also established a home equity line of credit to help get us through.

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bulimiamother
My D became ill at 15 losing a lot of weight to bmi 16 in aboutn three months.  Our doctor was very low key and asked that D see her alone without me (big mistake and first piece of parent exclusion).  D tries to eat more but flips quickly into bingeing.  We didn't like to stop her eating but there followed three years of bingeing amplified by unhappiness, weight gain and phobic behaviours.  D admits bulimia to me at 18.  Referred to paediatrian who recommends that she leaves home as family part of problem.  D on high doses of Prozac and begins self harm.  Has a job and becomes bulimarexic, starves all week and b/p at weekends - loses a lot of weight.  A wonderful friend recommends ATDT. Persuade D to come home and begin refeeding.  D wants to cooperate but is compelled by Ed to run away, steal and satisfy the monsterous need to B/P.  D begs for clinic and we send her to Mando in Sweden.  Inpatient was very successful and a turning point for her but the outpatient care was poor.  She was expected to look after herself and she was still very ill.  We brought her home and she improved slowly with many setbacks.  Began College but it was too hard and she relapsed.  She has been happily at home with us (aged 20) for three months now and we cook and eat for all it is worth.  She has a new College place for next October studying music and is happy playing the piano (with my watchful eye that this is not the next obsession!) She has leanred to drive.  It is 13 months since she went to Mando, nearly 15 since we began refeeding her and her brain is beginning to heal.  She was very ill and we talk about it a lot.  I wish I could have refed her at 15 and spared her 5 horrific years.  I hope that this recovery is real - I think it is.
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flamingo
HOUSTON WE HAVE A PROBLEM!
Hi all, we are relatively new to the forum, and I have been lurking for the last month, learning so much, and so grateful to see so many caring and knowledgeable people in this community.  Here is our long (getting longer)!

OUR STORY- D is 9 yo and diagnosed with AN in late January 2010!!! She is an only child, very high IQ, very outgoing and sunny all her life.  She has always been thin (except in the lovely breastfed baby-roll-fat days)-but the thinness did not alarm us, as my entire family is "ectomorph", and her growth patterns seemed similar to myself, my mom, my sister.  However, this fall she seemed to start getting thinner.  She had a bad cold in December, and her appetite was nonexistent.  I took her to the doctor for the cold, and asked if she thought D was getting too thin.  She was not concerned.  D was prescribed Zyrtec, which really made her whacky.  OUr family is definitely "foodies"-we like to cook, we have a garden for organic produce, we eat a wide variety of healthy food.  D has always been an adventurous and hearty eater.  We watched in alarm over the holidays as she stopped eating most of her favorite things.  
Back to the pediatrician, this time specifically about weight and eating.
D saying she was "full" when of course she wasn't.
Pediatrician-"let's rule out any problems-blood tests, ultrasounds etc....meanwhile add some pediasure to D's diet, and try to eat nutrient dense foods." Our pediatrician even told our daughter she should exercise, meanwhile, our daughter had gone from 55 pounds to 48-losing over 10% of her body weight, from an already thin frame. SO while we went around getting the tests, the ED was getting worse.  You all know the drill-dark moods, tantrums when asked to eat, watching your child become something out of THE EXORCIST.
We finally realized our pediatrician didn't get it and got D into a child psychologist who expressed grave concern for our D's health, and sounded the alarm bell. (a bell that never sounded in 4 trips in one month to our pediatrician!!!) The therapist sent us to the local children's hospital (which we had to pull major strings to even get an appointment for-a whole other story), which took one look at our daughter and put her in the hospital in the eating disorders unit.  We were scared and relieved that someone finally got it.
Part Two-the hospital stay-5 weeks!  Our D the only child under 12 there.  We stayed with her in the hospital-husband taking the night shift as I work til 10/11pm, me the day.  Docs seemed surprised we were there-no other parents were.  We had to constantly remind everyone, including her doctors, that she is only 9-therefore things like group therapy were not appropriate.  They kept forgetting.  And, of course, even though we were there all the time, we felt like we were treated as interlopers and outsiders.  BUT, D was able to start eating again, rehydrated, and gained some weight back.  They have a thing called the "point system"-where the kids pick their menus based on how many "points" they are supposed to get.  Meanwhile, Mom here is getting educated-reading Laura Collins' book, Lock/LeGrange, finding this forum--what you all have done.  I'm starting to feel like the "treatment" my D is getting may not be up to the current medical research, and may not serve her in the long run.
Part Three-Out of the hospital, into outpatient treatment.  D back at school-very happy to be with friends, and doing well in school.  Outpatient treatment consists of :
-a weekly therapy session for our D with a "fellow"-D loves this therapist, who practices CBT, but will leave sometime this summer.  We are excluded from this therapy, and that's fine.  I trust this T to tell me if there is something I need to know.
-check-up with MD every 2 weeks (we had one this week, and waited 2 1/2 hours!!!-from 4:15 to 6:45 til we saw the doctor-great for a kid with an ED to be late to supper!)-that's when the do the vitals, which they don't inform us of-just whether D is holding steady, gaining weight or losing.
-family therapy every 2 weeks or so-again with a "fellow" not a phD yet, who is leaving as well.  This has been the weakest link-she basically asks us how we are feeling.  I said 2 sessions ago that we were feeling unsupported-that I knew that there were skills we could be helped and coached with as parents.  To her credit, she did visit the OFF THE CUFF site and give me a hand-out from that in the next session.  But basically, we leave the family therapy sessions feeling befuddled at best, angry at worst. 

For the longest time, our D was given control of our menu planning, and we were told to stay out of it-to let the "team"-(which we never see as a team) be the food police.  To stay out of power struggles. Meanwhile my inner voice is screaming- "my daughter is eating crap, and not enough of it"!!!!  Finally this Tuesday, the doctor informed us that D has lost a little weight.  She told D that she could no longer choose her food.  Then proceeded to criticize her for eating a stir fry that was probably not nutrient dense enough (not knowing that I had packed it with coconut milk and oils-it was a beauty of a high calorie meal) and telling my husband that Taco Bell had good food.  But at least, now the D seems to have o.k'd us taking over.  I plan on doing the Magic Plate.  
But, its clearer and clearer to me that we are going to have to assemble our own team, one that is really going to coordinate, and have much more knowledge about Maudsley, and how to involve parents.  
If anyone has any particular people they know in the Texas region to recommend, please let me know.  I would also do a long distance consultation.  Also, any advice on a child at this age?
And, btw, D is NOT HAPPY with the new regime.  But she ate everything on her plate last night and this morning.  

Thanks in advance.  I wish we were meeting for other reasons, but here we all are.
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sndk
Hi folks,
I've been reading this forum for a while now and just registered.  Here's our story.

My daughter has always had a small appetite.  At her 12 year old checkup, she had grown an inch but did not gain any weight from the previous year.  Her doctor asked us to come back in a couple of months to check her weight again.  She gained several pounds and I thought we were done.  She completed 6th grade and was ready to move on to the 7th grade at the Jr. High.  That summer, she had a tough time with separating from me for camps, didn't like the lunches served and started to refuse to eat anywhere except home.  Her anxiety increased with the start of school.  No body image issues or purposeful dieting; D was just not hungry and would refuse to eat if she wasn't hungry.  D got full after only a couple of bites of a meal.  I saw her one evening as she was getting into the shower and was shocked by her appearance.  I made an appointment with the doctor, who referred us to a therapist and nutritionist. We started weekly weight checks, as well as weekly therapist and nutritionist appointments.  D made some progress initially but 6 months later had a setback.  She got a stomach bug and couldn't eat for a couple of days, then wouldn't eat much for several weeks after.  She gained back a pound, but then held steady for 6 weeks.  Dr. recommended intensive OP but D's weight was too low.  The program would only accept her as IP.  We agreed, but only lasted 24 hours.  D's anxiety and hysteria got the better of us, the program didn't seem to be a good fit so we decided that we would re-feed at home.  Ordered the Lock/le Grange book and Laura Collin's book.  And here we are.  We have completed 4 days of 3 full meals, 3 full snacks, without complaint.  I am hopeful that we are on the right path to full recovery.
Thanks for "listening",
Sandra


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forhisglory

We are an American, blended family of 7, second marriage for my husband and I. My husband has 2 boys ages 17 and 21 and I have 1 boy age 20 and twin daughters age 18.  We have been married 8 years in June.

 
One of our twins was born with a twisted bowel and around 7 days she had emergency surgery to correct it.  All of her growing up years she has suffered from abdominal pain and chronic constipation.  When she would eat, she would have pain. There were times that I had to encourage her to eat even though it was painful. There were many diagnostic tests, surgeries and medications through the years.
 
When she turned 15,she was getting more and more depressed about her chronic medical condition.  Her meals were small to help avoid as much pain as possible. She began to miss more and more school days and her grades began to drop.

  At age 16, we decided to have her home and Internet school her. Suddenly, she declared that she wanted to become a vegetarian.  Her pain still was causing problems, so we took her back to her specialist.  He performed an endoscopy to make sure her throat and stomach were not inf lammed.  The day of the procedure was very difficult, IE; she was dehydrated so they had to stick her 4 times to get the IV started. She became hysterical, so they gave her Versed through her nose, which burned like a son-of-a-gun. The procedure was done and after she came to, she said "I am done with all of this guinea pig stuff. I don't want anymore tests and I refuse to take anymore medications!".

  This is when ED moved in. Her world went from having friends, interacting with family and going to holiday functions to total isolation.  The only time she would leave her bedroom or the house, was when she was required to meet with her teacher once a week. She rarely spoke with anyone and she switched her schooling time from 5pm to 7am and slept when the other kids were in school during the day.

 Little by little solid food was eliminated from her diet and all she consumed was liquids.  We took her to her doctor and she said "Please eat more food." Antidepressants were ordered for her but she refused to take them.

 Finally, in June of 2009 we took her back to her doctor and asked her to help. She was diagnosed with severe depression and anorexia nervosa. The doctor threatened her with hospitalization and our d said "you can't make me do anything." In the state of Washington the age of consent is 13 years of age. We were shocked! 

 In July we took her to the hospital and requested that she be admitted for anorexia nervosa and suicidal tendencies and they said she did not meet criteria. We demanded involuntary and had a psych eval done and again they told us that she did not meet criteria. The criteria was that she would not be dead within the next 72 hours and she denied that she was suicidal. She stated that Mom and Dad were overreacting. They sent her home with orders to "work in the garden,Please eat more food and seek counseling."

  We spent the next 10 weeks taking her to a counselor at the cost of $2,000.00 We begged the counselor to "sound the call" when our d lost another 15 pounds while in her care. She refused to call the crisis center. We saw our daughter slipping away and took her back to her doctor, who gasped when she walked into the exam room.  She immediately told us to take her to Seattle Children's Hospital because she could die at any moment.  She weighed in at an unbelievable 69# and was 5'5" tall. She spent the next 52 days in the psych unit with all of the other psych patients with all kinds of diagnosis. She was never tubed and was given boost when she refused to eat. We felt we had no other choice other than this facility.

 When she turned 18 on February 1st, 2010, the director immediately discharged her as an "intractable case" and had her involuntarily committed to an adult psych intensive care unit at another Seattle hospital. She was there for 21 days and only drank boost. We told them that the judge told them to tube feed her and they refused. We felt that Seattle Children's Hospital and the  State of Washington failed our daughter and we petitioned the courts to release her back into our custody before they allowed her to die.
 
We finally got her back on February 24, 2010 and drove as fast as we could to the State of Oregon and the Kartini Clinic in Portland, Oregon.  When we arrived she was in critical condition and worse that when we took her to Seattle on December 8th, 2009.

  She was immediately admitted to a medical unit and finally tubed and spent 14 days there. Her heart rate was in the low 30's, her blood pressure was 90/50, she had no measurable temperature and she was severely orthostatic. They did a bone density scan and discovered that she had severe osteoporosis.  She had hidden the fact that she had not had a period in over a year and had her twin cover up for her.

 We had to petition the courts here in Oregon for permanent guardianship because of her critical condition and the fact that she was a flight risk. This cost us $4,000.00 and recently wasn't worth the paper it was written on when she threatened to runaway from the treatment center.
The ED is so bad, that mentally she is incapable of understanding the seriousness of the disorder. She has been in the Day Treatment Unit for almost 6 weeks and we were told that she now needs residential in Milwaukee, Wisconsin.  This is expected to be a 60 to 90 day stay.

 I have been the primary caregiver here in Portland, as my husband needs to work to have the medical benefits to cover this tremendous cost and also care for the other children back in Washington. By the way, the final bill for the failed treatment in Seattle was $250,000.00. They knew 2 to 3 weeks into their program that they could not help her and we feel that they took money that they knew they did not earn. We have had to put our desire to seek legal counsel on the back burner until our d gets better, but we will revisit the negligence on the part of the hospital in Seattle.

 Please go to http://www.kartiniclinic.com/    if you have any questions regarding evidence based therapy. They saved our daughters life and when we return to the clinic after residential, we believe in our hearts that we will get our daughter back.  FHG
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maryann2033
I am the mother of four daughters. My oldest daughter has been diagnosed with anorexia. We live in the Midwest and have always been a very close and happy family until anorexia took over our life about three years ago. Here is the background of our story.

Age 13:
The end of my daughter's sixth grade year we begin to notice that she became very aware of food after a science unit that forced students to keep a calorie journal, watch the movie Super size me, and basically taught them that it was important to watch what you ate. Our daughter has always been a high achiever and is what you would call a classic people pleaser...she wants to do the right thing. My husband and I believe that she took this lesson to heart because after the school year ended we began to see her start restricting food that was not low fat or anything with high calories. She also began running and swimming. At first we were happy to see her taking an interest in her health because we had no knowledge of eating disorders so we were not aware that she was already walking down a dangerous path.
Our daughter started middle school after leaving her small private elementary school that I would have to describe as very insulated and comforting and secure. At first she adjusted nicely to Jr. high making friends and doing well. Several months later we began to notice our social butterfly had become quiet and isolated. She talked about how the kids scared her with their talk of wanting to drink, date boys etc. She slowly started to retreat from friends and began to further restrict her food and began exercising every day. I became very alarmed by her weight loss and took her to the family doctor who then noticed that her weight had dropped by 12 pounds. He immediately referred us to the hospital for further testing as my daughter also has a congenital heart defect that has required open heart surgery when she was three and six years old) I should note that her prognosis is excellent and no further surgery is needed although her pulmonary valve will never be 100 percent. Her tests all came back in the normal range but we began to see a therapist. This turned out to be a nightmare...we were completely cut off from any discussion and we felt that the therapist was actually making things worse. At this time we blindly went about refeeding our daughter and for a time she gained the weight and remained stable for the rest of the year and into the summer until her eight grade year.
From this point we have been in an up and down pattern with her getting better but quickly relapsing when she reaches a weight of 100. Throughout this time we have been taking her to therapy at the local children's hospital and meeting with a nutritionist weekly. About five months ago she had a very severe relapse. She is now at 81 pounds at 5'5 and 16 years of age.
The only way to describe our life is pure hell. We have put our life on hold to deal with this horrible disease and we are in the fight of our life with her continued resistance. I fully expect them to admit her to the hospital tomorrow after this latest drop of three pounds from our last appointment. My greatest fear is losing her. I am for the first time terrified that we are not going to be able to pull her back. I can't begin to find the words to convey how scared I am. I can't sleep, eat, function normally with the other girls...it is consuming every part of me. My daughter and I have always been extraordinarily close and I just can't believe that I can't find some way to get through this. I know I sound desperate but I am and I am writing in hope that someone out there can tell me is it possible to come out of this severe of a relapse? I have never seen her so defiant and unwilling to even try...My husband and I are utterly exhausted and I don't know how much longer we can all go on like this..so i sit here another sleepless night praying for some comfort and for some miracle...thank you all in advance for any advice you may have....
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phillymom
Hi,

I am a rookie at this and by accident deleted my threads ugh! I use to be k....123 so here I go again.

My d nightmare started by in Jan 2008 when she was bullied on facebook by her so called boyfriend. He spread these terrible rumors about her to her friends who in turn never spoke to her again. We thought she was okay as she muddled through her junior year of school.  That summer she was bullied again and she was not okay. I found her diary and read it and the terrible hell she was going through she admitted she was bulimic

I went into "fix it" mode and got her into therapy. She did IOP and then followed up with outpatient therapy. She was d/c and her therapist said that sending her off to college would be the best thing! So off she went and so did her ed head go off again.

She is done in 3 weeks and is coming home for the summer to home She is in the b/p mode right now and wants help. We set up an appt. with a new therapist and hope this works. My husband is apprehensive about sending her back to college....HELP

Any suggestions ???? Advice.

K

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ChrissyS
Hi, my daughter is 16 today and has ED since July last year 09..Prior to this was school bullying in 08 which led up to anxiety, depression, body dismorphic disorder, school avoidence, then ED came in by restricting meals, exercising too much, she now makes her self sick on occassions.. She has been hospitilised 3 times since July last year, once with NGT. Last admission was 4 weeks ago for a few days.
She will go two days without eating then binge.. The anger and meltdowns are incredible and while she sees a psychiatrist for the past 3 years (as she has Aspergers Sydndrome too), a double whammy, we arent seeing much headway.. Things sometimes seem to improve and give me hope then two days later we are back to square one.. We are hoping to get into a clinic at one of our hospitals after her consult in two weeks time.. Other than that there isnt much help here in Adelaide other than going interstate.
The thing that is getting me the most is the anger and temper tantrums.. Obviously more so when she hasnt eaten and she is beyond any reasoning.
I am tired and worn out and wonder when i will see the light. I am so glad i was referred here ..i dont feel so alone now..
Tonight we are going out for dinner ( surprisingly her decision ), for her birthday but she has made it quite clear she wont be eating much. She has made it quite clear she wont be eating any of the birthday cake i made for her. I had to send her to her dads so i could make it because the ingredients i had sent her over the  top.. She told me i was wasting my time.. They sure know how to hurt your feelings.. I want her 16 th birthday to be special and she just poo poo's it all the time. A few weeks ago i didnt even know if we would make it to this day. Everyday is a gift as far as i see it.
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sk10mom
Hi,
I am new to this forum. My 16 year old D was diagnosed with Bulimia in February . She had to be hospitalized for 10 days because of a low heart rate. After she came home she recovered well and gained back the weight she had lost. Now that her weight is normal again she is actively fighting the 5 meals /day plan and is trying to cut calories whenever she can. She also started to go running after school against doctor's orders. We are taking part in family therapy but my D hates it.

Two days ago her blood test came back low on potassium, an indicator for vomiting, even though we keep an eye on her when she is at home. It looks like ED has a tight grip on her again. She started driving herself to school in April, which may have given her too much freedom. Should we take her driving privilege away from her again?


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number8
I am new to this and don't understand all the terms used here, but I will do my best to give my background and tell my story.
We are a family of 5: my husband (51), myself (43), Daughter (17 1/2), son (16), daughter (almost 14). We live in an affluent community less than 10 miles from Boston.
In May/June 2009 when my d was 16 1/2 and finishing her junior year, her best friend dropped her like a hot potato. She didn't realize it at first but knew something wasn't right. Everyone was stressed about finals, SATs, AP exams, college apps...it is an extremely stressful school for high achievers and both my d and her BF were extremely high achievers. The blow out from her friend came on the eve of her first final and that sent d whirling. She couldn't study; she could barely eat or sleep--she was spiraling downhill very fast.
Apparently the pulling away had started weeks earlier and I believe that in some strange way, d began her ED behaviors to get attention from said BF. Other friends called to tell me they were worried about her. I thought it was a big act. An attention getter. Drama. I also thought that with her dream of going to an Ivy League school becoming a reality--she created a way out if things didn't go as planned. She could say, "I didn't get in bc I was sick at the end of junior year."
The summer was ok. We traveled and she made new friends (one of whom was noticeably bulimic). She was in fabulous shape; she'd been working out and had good muscle tone; wasn't overdoing it.  In August, she told me she thought she needed help; that purging had come back and had gotten so easy to do it scared her. It was much easier than working out.
In September, she was restricting and purging...not even binging! I took her to the pediatrician. She was concerned but not terribly. She wanted some baseline tests. She started seeing a LISW ED specialist (T) weekly. When my husband and I met with T she told us very clearly, "This isn't your fault but there's nothing you can do. Go back home and treat this as though nothing is wrong. Do not mention food. When she's ready, she'll eat. Not before then."
I have to admit, I was relieved. I felt like I was off the hook. I had a hardened sense that was actually very unusual for my normally warm personality. But I wanted no part of this. My sister has struggled for 30 years with an ED and I would not go through this again with my daughter. It was as simple as that.
One day in November, something clicked. I said, "I have fed my daughter since the minute she was born...I cannot watch her starve. I cannot. There MUST be something I can do." I found some info on the web about Maudsley, emailed the ONE therapist listed on the Maudsley parents website located in MA and never in a million years thought I'd get a response. I did.
Since November 2009, Maudsley Therapist (MT) heads the team of pediatrician, psychiatrist & nutritionist. D no longer sees individual T (SW).  D has had ups & downs. She voluntarily gave up purging when her dad (dentist) told her she was losing enamel on her teeth. She never vomited again. But she restricted. Severely.
She lost privileges of driving unless her calorie intake was sufficient. This was a huge motivator for her. We cut back her school schedule to allow for all the appointments. We let the teachers know about her struggles. I ate every single meal with her and stayed with her afterward. It was extremely draining for everyone in the family, but worth everything.  She worked very very hard to reach her goal weight and to be able to go on a school trip to London in February. She was gone 5 days and came back the same weight. It was a huge accomplishment. Since then, she worked toward maintaining for the next trip which was 3 weeks to Spain. She just returned and managed to maintain her weight which was extremely difficult given the amount of walking she was doing.
Because of these successes, she only needs to weigh in 1x/mo with the pediatrician and also the nutritionist. We continue Maudsley weekly to face the challenges that college will bring.
We are cautiously elated. We feel as though we caught this just in time and turned it around at a critical point. She is by no means out of the woods, but two days ago she said, " Mom, for the first time in a LONG time, I can honestly say, I like my body."
It saddens me so much that treatment like this was not available when my sister was 18. She is almost 50 and is skin and bones. It is painful to look at her, but I have so much more empathy now than I ever did before.


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Polly
Hi All - I am new to this forum and loving the sense of community. I gave a background to our situation in my dolphin post but here it is again. I am a mother of a son with AN. He is 14 and had always been a slender boy.  Currently he weighs about 115 (5' 9 1/2"). He was 88 pounds when he was admitted to hospital last Oct/09. He spent 7 weeks in the eating disorder ward. He was discharged at 80% of his pw so that we could participate in a study that looked at FBT (Maudsley) vs FST (Family Systems Therapy). We got selected for FST (drag). We are in this study until Aug /10 at which time, if he is not "cured" we can seek alternative therapy. Since his hospitalization, he has gained 27 pounds.  We have had ups and downs in the gaining process but overall meeting expectations - not without BATTLES.

His rage can be quite frightening and embarrassing (especially when he pulls his tantrums right outside our house. He's taller than me and I confess feeling intimidated at times. I wish I didn't.

It was very difficult getting a timely diagnosis because he is a boy. My pediatrician thought he was growing faster than he could fuel it. He never checked his orthostatic changes. I then found a psychologist who was supposed to have had experience with ED's and he missed it too. Thought my boy was just anxious and I should back off, let him go on a 3 day school trip to escape my scrutiny. That's when he arrived home on death's doorstep and I took him to emerg.

I am especially interested in connecting with other mom's of boys with ED's. I think there is a bigger stigma for them and there is little in the way of resources for boys in this situation. Thus far, I am really feeling grateful to having found this forum.

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empowered
I have been reading posts here for about a month but have not posted myself. I am amazed at the consistancies in all of our stories. Sometimes it is like you are describing our daughter and our life. I always get that same feeling when we attend a class and there are new parents there.

We are an average, middle income family in Ohio, USA. Parents are married 29 years. We have three kids. Son, twenty-four, married, in the Air Force; daughter with Anorexia (no, that isn't how I usually describe her), twenty-two, currently in college; son, twenty, in the Air Force. Our daughter is very close to both of her brothers.

D has had Ed for about six years. We have been aware for the past four. Has co-morbid Bi-polar, OCD, GAD. She was diagnosed with these diagnoses about a year before the Anorexia diagnosis and had problems about a year before that. Prior to these problems she was perfect. I hate that word now. She was a straight A student, gifted athlete and everyone's favorite person. Then Ed moved in.

Summer of 2003-Older son leaves for Air Force.

Fall of 2003-D experienced what was to her a devastating disappointment at school. Another kid might have been angry, made some drama and then got over it. Our D internalized everything. We didn't know. This was also the time that she noticed boys really didn't pay much attention to her as a girl, and most of her friends were getting that attention and "finding things out". She became extremely depressed rest of school year. Decided she wanted to change schools. We found what was a good fit for her in a private prepartory school.

Fall 2004-Transferred at the beginning of her junior year. Did well her junior year, made new friends, had her first date, grades were really good. She lost weight that year but we thought it was b/c she was travelling so far to school and keeping such long hours.

Summer 2005-Caught D smoking. Grounded her. This was actually the first time we had ever disciplined her. She ran away. We were floored. She was gone for three days. We found out later that she did some really weird things in that time. We were very concerned but had no idea what was going on or what to do.

Fall 2005-Started school again. Tanked. Lots of bizarre behaviors, running around with shady people, smoking, drinking, etc. We found laxatives in her purse. Yes, we snooped. We were beginning to suspect she had been raped or abused in some way and had not disclosed. Denied anything. We snooped in her room and her purse for drugs. Found nothing but the laxatives. Had her tested on four different occasions, all coming back negative. Turned eighteen in October. In December decides she doesn't want to live with us, moves in with my mother, changes schools yet again, this time to a school with a poor reputation in everything. The one saving grace, she agrees to see a counselor that I know. I think she knew something was wrong and was subconsciously reaching out. My husband would pick her up every week at my mother's, which is some distance from us, take her to her appointments, then take her back to my mother's. He said she would cry all the way home after every appointment. In the beginning we were doing family counseling, but then my daughter refused to let us come in with her.

April 2006-When she had been seeing this counselor for about four months the counselor called us to say she believed D to have Bi-polar disorder. We took her to a psychiatrist for med eval, which turned out to be a joke. Psychiatrist diagnosis of D was "spoiled teenager". We tried to explain to him that there had been MAJOR changes in her personality, fell on deaf ears. To pacify us, he gave her an anti-depressant. Three weeks later she was psychotic, talking to dead people, killing bugs the size of her hand, etc. She was hospitalized for eight days. We advised the hospital there might be a problem with eating. That, too, fell on deaf ears. While she was there she was afraid to take a shower by herself so I had to go in with her. That's when we found out she was cutting. It was all on the top of her leg, where her panties covered. Was put on psycho-tropics. After hospitalization moved back home. School she was at let her graduate, even though she never went back. She actually graduated near the top of her class b/c of her past school history.

Fall 2006-Tried to go to college, about an hour from home. Tanked again. Moved in with a guy she had met who was MUCH older than her, almost our age. This is when Ed really dug in. Kept losing weight. Insurance drops her b/c she is no longer in college.

February 2007-Has continued all this time to see counselor. Counselor tells us she has AN and we need to seek a specialist. Found one of only two outpatient facilities in Ohio. There are NO inpatient facilities. Night before first appointment major episode, fits, crying, pleading, promising. Hard, but made her go. Saw psychologist with a specialty in Ed. Went for about eight months. Husband and I went when we were told to. Had to pay out of pocket.

September 2007-T calls us to ask us to come in for an intervention. D was decompensating, couldn't eat at all at that point, is no longer allowed to drive. T tells her she needs more intensive treatment. Needs inpatient. D refuses. T says that within a few weeks she will be considered critical and that we can take guardianship of her, which will take away all choice she has. She states "My parents would never do that"....Huh???? I tell her "I love you. Get ready" She is angry. Threatening, begging, bargaining. No dice. We have no insurance on her now so the T pretty much leaves it up to me to find someplace. I took the next week off to research. Pitt U would take her but only for thirty days. Not acceptable. We wanted the best chance we could get for her. Found Remuda Ranch East in Virginia. Went to the bank to mortgage our house to pay for it.

October 2007-D spent sixty days at Remuda. We went for the sixth week for Family Therapy Week. D refused step-down in Arizona. Came home at Christmas time.

January 2008 through present- D still struggles. Has continued to work on what we learned at Remuda. Has never been WR. Still sees original counselor, whom she has a very good rapport with, as well as a good psychiatrist for meds. Refuses to see anyone for Ed. Is now able to attend college. Has to pay for it herself, as all our money goes for her past treatment. Won't go back to outpatient at this time. She applied for disability and was declared with no denials. So her entire disability check goes for school. We buy books and give her gas money, etc. Still lives with same boyfriend. He is not a bad person, doesn't drink, do drugs, just not the strongest person in the world. I guess that's why Ed likes him. She is determined not to be disabled but this is a bear to get rid of. Of course, it is on our mind every second on every day. Every decision we make is contingent on how she is doing. We still sleep with both phones by the bed. BUT, we continue to take classes at the center where she received her outpatient. They have asked us if we are interested in being on a panel for these classes and trainings that they do. And we have made it clear to her in no uncertain terms that we are stronger than Ed and we are not letting up until he is gone.

Sorry this is so long. Thank you all for being here.

Nancy


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LizJ
Hi, all...I'm glad to have found this group.

Our younger daughter, 17 yo, came to us about 6 weeks ago and told us she had an ED. A perceptive youth leader at church noticed that some of the teen girls were showing signs of possible eating disorders and sat them all down for a talk. That set the stage for some one-on-one talks between her and my daughter, where she encouraged our daughter to tell her parents.

This has been going on for about a year. DD fits a lot of what I see as background for many girls with EDs - perfectionist, into dance, family history with mood and/or anxiety disorders on both sides, very focused on her friends who are also mostly into dance, hence the whole distorted body image thing.

Nutritionist and counselor were both originally impressed that DD was wiling to be open and honest with them. However, it's been clear that in the last two weeks after beginning sessions with both that DD's eating and weight have deteriorated. Nutritionist said yesterday that it was either Maudsley or an inpatient program, so here we are beginning Maudsley. Last night was the first meal. DD gave us some lip and obviously didn't enjoy it, but she ate. Right now it's all about establishing the eating; she's still on skim milk and no adding hidden stuff to make the meals higher calorie.  I'm praying hubby (who has been out of work since Feb) is doing OK at home today with breakfast and lunch.

One of our big challenges is that both DH and I are overweight - DH has a complicated medical mishmash going on where hardly a single body chemical is in balance (originating I think in the Pituitary); I have PCOS and am entering Menopause. Also, DH is a compulsive overeater (Daniel Amen's profile of this fits him to a T) and I eat "comfort foots" when anxiety is on overload.So we're going to have a challenging situation where we're going to try to add fats and calories for DD#2 and trim them for ourselves.

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NetteWood
Hi everyone,
I am really hoping you can help me as I don't really know where to turn.
My beautiful, bright daughter has an ED and I have no-one to talk to about this.  G is 18 years old and has had an ED for about a year. I thought we had sorted this last summer but sadly I was wrong.  G is due to go to Uni in October but as you can all imagine I am concerned about her being away from home.
Any advice would be gratefully received.
Thank you

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