We have a number of participants here at various stages of re-feeding. It would be great to hear how it is going at 2 weeks, at 2 months, at whatever stage you are at - good news and bad.

Remember: new parents come to this board every day wondering whether to try this approach - your stories are helpful to them!

Here's mine: daughter became anorexic 3+ years ago, started home refeeding within a few months of restricting, no hospitalization or inpatient, back to physical health in 3-4 months, slowly back to emotional health over following year. In past two years needed periodic support but no major relapses, now in freshman year of college.

Your turn!

Laura

Our apparently-thriving 14-y-o went off a cliff in the middle of June and lost 23  pound in 5 weeks.  We struggled painfully through the summer, found refeeding (and Laura's book and this wonderful message board), and started at the end of August.  Our D. is gaining slowly--since her weight never got very low we and drs. didn't feel we needed to force rapid gain--and she's  coming back mentally towards who she was.  Still struggles and the occasional blowup, like yesterday when she ventured out and without asking me bought and ate a muffin, then got very upset.  But she ate it, and the scope of the upsets gets less every week.  I can't say every day, because some are better than others, but she's thriving in school and most of our struggles aren't over her eating everything on her meal plan when she's here, but over what happens when she's at school or with friends.

For those who are new here, there are many stories like mine:  I came to the board frightened and desperate at what was happening to my d., not knowing if we could do this or if it would work, then got support through the first hard weeks, both moral and practical (thank you everyone!), then keep coming here, getting and trying to offer help and suggestions as we keep working through today's and this week's problems while our d. recovers with our help.  Refeeding is hard, but not anywhere near as hard as watching your child starve and not knowing what to do or how to do it. 

Best,

Whistler

Update for our d who started restricting/purging in May this year: 

Discovered the dreaded truth in July of this year and d confirmed this.  My wife Marie was suspecting as d had lost a lot of weight but as a dad I was blind to this.

We sought trad. therapy which failed to produce results   I almost fell for the traditional quagmuire that caters to anorexia/bulemia.   That did not happen, thank God!  Thanks also to my wife who clubbed me over the head with the common sense of Maudsley. 

Sept 22 began the refeeding with help from Dr. le Grange and his team at U of Chicago.  Our d hated the initial visit and the first weekend of refeeding almost broke our hearts to see how distrought our d was over something as simple as finishing a meal.  We shed many tears but are trying to smother the life out of the ED by suppporting and loving our d.  Also important was seperating the ED from our d.  Hate the disease and not the child.

  She has come so far since then and it has only been a few weeks.  My wife has done the vast majority of the meals packed with caring and calories. We have heard our d laughing, singing, and saying thank you on occasion.  Although she is a bit angry about the re-feeding I assured her that she will probably be able to see this differently in a few months.  As the parents sometimes we have to sacrifice temporary friendship for the future of our child.

Thanks to all the postings that are supportive of saving the lives of our kids.  Laura has done great work here and the support we all give eachother makes the journey much smoother.      thanx   jake

I love to read these updates and hear of progress, thanks for the posts and the feeling that goes into these respinses. Parents of anorexica sure have to be unconditionally loving and determined.  

I still consider us at 'negative anorexia' stage (like on a  number line, we are "less than zero").  First we must conquer the copying ritual it seems to me,  then we will be dealing with the "zero" level, i.e more typical restricting anorexia, at which point we can try more conventional refeeding (like maudsley at home, or at mandometer clinic, as the circumstances dictate).

I have been waiting a few days with our update, as I wanted to give a first-hand account of my daughter's status - we just returned from "parent's weekend" after her first 6 weeks solo back at college.

A quick synopsis: She developed AN during her freshman year in college, started restricting early November last year, but only had minor weight-loss until going back after winter-break. Major restricting Jan-April, total weight-loss of ~40 lbs. We were aware of some weight loss, but had no idea of extent - she was 3000 miles away. Returned home in May, immediate hospitalization with severe cardiac symptoms, complete bed-rest x 4 weeks, total time in hospital 6 weeks, gained about 16 lbs. Released to home for completion of refeeding (hospital supportive of Maudsley, helped set up support team of nutritionist, therapist and M.D.), I took 8 week leave of absence from work to make this possible. She was cooperative and very brave, from the get-go wanted to get well, wanted her life back. Major anxiety and fear, tears at every meal, but fast, steady weight gain. Ate about 4500 cal/day for several weeks in July. Remained vegetarian (have been since age 12) but gave up vegan diet, and added eggs and dairy. By end of July, she was allowed some exercise. In August we started gradual independent eating. Mid August she reached her IBW (ideal body weight) of 137 lbs. By September she had added the 5 lbs "buffer" requested by M.D. First week of Sept., she returned to college.

6 weeks into it, she is doing incredibly well. She lost 2 lbs the first week she was there, but has held steady at 140 lbs ever since. She eats from her meal plan, but no longer writes it down (can keep it in her head). She has dealt with many quite challenging situations, like trip to New York, and weekend biology field trip. Her room-mate and several girls in her dorm knows about her problem, and are very supportive (where were they last year??). She is seen every week by health center for weight check, and likes her new therapist and nutritionist. Her dexa-scan came back close to normal, but we are still waiting for her period to return. Her doctor has invited her to participate in the training of head-residents for next year, to find ways of preventing girls with eating disorders from "falling through the cracks" like she did, and she has agreed. She is enjoying her classes, but not obsessing about them, and is making plans for her junior year abroad. She still have some issues, will not eat desserts, ice-cream and a few other things. Looking a most kids her age, her diet is very comparable, if not better.

There may be obstacles in her future, however, I am feeling very optimistic at this time. Refeeding "broke the back of the AN", as Jane put it, and gave her a chance at record-speed recovery. We will continue close monitoring, and bring her back for more support if she needs it.

hi mom of dancer, i'm so glad you were able to catch the ed so early on.  it really sounds like your d is a strong person.  just being able to discuss it and admit that the ed exists is really positive.  my d has yet to admit that there is a problem at all.  she's so young though (12 next mo) that i don't think she totally understands her own feelings.  i have her seeing a therapist who specializes in ed once a week, so hopefully that will help. 

i know what you mean about the food.  i've never thought of food so much in my life.  i'm constantly counting calories and planning the next meal.  i miss the carefree days.  i haven't seen my d pick up a piece of food on her own in a year.  if it's in front of her, she'll eat it.  only because she knows she has to.  on the other hand, she appears really happy most of the time which is encouraging.  i think this has everything to do with refeeding and getting her healthy.  she's still has the anxieties but that's part of the ed.  it seems that all girls that develop this thing have anxieties and lots of them. 

hang it.  you're doing a great job.

nina

My daughter became anorexic 3 months ago & I caught it within the first few weeks. She was initially making good progress seeing her pediatrician, dietician & therapist weekly. She was on the low end of a healthy weight range to start, lost 20 lbs in 6 weeks gained back 5, then stopped eating again and became extemely weak, depressed and pretty much incoherent.

She has been enrolled in a Maudsley-based partial hospitalization program for a week.  She's there 6 hours a day, including two meals packed by me, which she is required to finish.  It's still extremely emotional & diffiicult for her to eat, but she's working hard, wants her old life back & is reluctantly eating everything put in front of her, including meals at home.  She receives appropriate support the rest of the day which has helped her immensely.

 For me this is the best of both worlds.  I am a single mom who is the sole support of my two daughters, so not working is not an option.  The treatment program conveys one consistent message, "your parents know what you need", that supports my efforts at home & on the weekend.

For those who haven't had success with a completely home-based refeeding, this type of program is a great alternative.

It's the Laurelwood Hospital Eating Disorders Program (Cleveland, Ohio area).  The 5 day program is followed by a 3 evening per week (includes dinner) outpatient program. Includes support classes for parents along with medical monitoring, therapy, group sessions, etc.

Today my daughter came home with an idea from the program to write down all the negative thoughts that kept her from getting well ("I'll get fat & ugly", etc.) & burn them.  She had a pile of at least 20 pieces of paper which she burned in the fireplace & took pictures of .  So far, it's a miracle, just keeping my fingers crossed. 

We have the first 5 lbs!  I'm so excited.  It took more than 6 weeks to get there.  I never thought I'd see the scale go up.  Thanks so much to all for the encouragement and the great food ideas.  My daughter still has a lot of trouble with the an fighting back, especially when eating in front of other people.  And we still have 11 more pounds to go.  I am looking forward to these next two weeks when she is off from school.  Doesn't the average American gain 5 lbs around Christmas?  Let's hope so......

Hi everyone. Riche had his first fish in over 3 years on the weekend. He has been weight restored for 2 years now and at nearly 15 years of age is well and happy, but it seems like the whole anorexic process is still unravelling. It has certainly changed us all.

Hi L, In retrospect, I guess it was a question. Riche is still 'extreme' in  his attitude towards meat, eg not wanting to wash dishes that have had meat in them, and in light of his strong ocd component, possibly predating an, although I know this is still a subject under debate, I view eating fish as another step towards balanced healthy eating habits. Although I respect vegetarianism as a choice, in Riche I consider it as integral to having had an eating disorder. Thanks for your comments. I remain intensely interested in anorexia, and will do so until better treatment options exist in Australia.

Here is our update...

Our straight-A, just-finished-7th grade, first child, tall and on the slim side 13-year-old D complained of stomach pain whenever she ate late last August while we were on a family vacation with friends at the beach in North Carolina.  I took her to a new pediatrician upon our return (hadn't been in a while and she wanted a women doc--reasonable request) and she was sent for x-rays.  Impacted stool was what we were told by her pediatrician.  I should say that the pediatrician also said that an ED was something that she/we had to consider at that point given the circumstances--we didn't think so and neither did the doc...

Significant weight loss and not much eating ensued.  We were referred to a gastro-doc and while nice, he did every test he could think of to find out the physical cause of the stomach pain.  By mid-October, our D was down to 87 lbs (from 115) and while at the gastro-doc, after the loss of a few more lbs in the course of a week, I arched an eyebrow when he said "We might have to put you in the hospital if this weight loss continues."  Based on my reaction (??), he looked at her chart again, and that afternoon our D was admitted to the local children's hospital.  Sadly, they had no expertise in EDs and so, after a week, the insertion of a NG feeding tube, the addition of 8 lbs, our D was released and we found a nutritionist and therapist who were familiar with EDs.

We had come to the conclusion that our D had an ED just prior to the hospitalization though it wasn't easy for us (wife and I) to accept...the hospitalization occurred mid-October and we spent the rest of that month and into November trying to get our D to start eating again.  Not much success there and the NG tube kept her alive while relieving her of the need to eat--a mixed blessing or perhaps no blessing at all.

By mid November, we and our treatment team knew that trying to do this on our own wasn't working and we began searching for IP placements.  This took 3+ weeks and culminated with my D and wife flying to Denver (from Orlando, FL) to begin the IP program for EDs at Children's Hospital there on December 1.

As all of those who've been there or are going through this will know, I've left out the details regarding our formerly sweet D displaying some "Regan-like" behavior complete with profanity and knife-brandishing at the table.  Many tearful meals, major depression--in short, our family of 4 (mom, dad, D and 11-year-old sister) were devastated.

My wife stayed with our D for the first week of her time at Children's and then returned home to her job.  She returned to Denver a week later and stayed for the next 4 weeks.  D-2 and I went to Denver for a Christmas we'll never forget and then my wife and I swapped with me in Denver for a few weeks in January. 

Our D gained weight at Children's in Denver.

Whatever else, we are all so grateful for my being able to write that.  We chose Children's because they would work with our insurance, they took 13-year-olds, and because they had some degree of parent involvement.  While we wish that there was more parent involvement--they are working on this--our D came home after 2 months at @ 95% of her ideal body weight.

Since then (February 1), we've seen the depression lift and our D's weight has decreased.  She is seeing a T (same as the one she was seeing in the fall) twice a week while seeing the nutritionist once a week.  She is taking medication for depression and anxiety. 

The approach they take at Children's is to have patients be involved in meal planning (if they are able) so as to help them desensitize and lose their fear of food.  Every day since December 1 then, we've meal-planned with our daughter.  At the hospital, with a fixed menu that varied little, this was doable.  Here at home, it has been a real time-sink and fallen to my wife.  She hates it.  D eats breakfast, lunch, snack, dinner and a before-bed snack. 

Just within the last week, I caught her throwing away food and she admitted to not eating all of her lunch at school.  The ED is still there, still strong.  I think we are both feeling like we've been sucker-punched.  I think that we felt as though we deserved to be making more progress than this.

Having said that, I need to remind myself that outside of eating, our D is doing very well--the heck of it is that my wife and I both think/realize that if we let her, our D would go right back to total restriction at this point and with that, would come the depression not to mention the threat to her physical well-being.

I should also mention that our D has been back in school since she came back from Denver.  Normal teen-issues there are not helping, but, short of home schooling, these issues can't be avoided.

So, after 4 months of sustained treatment (I count from December 1--D's entry into Children's as that was when weight loss was reversed), we've definitely made progress.  The sobering realization that our D's ED is still so strong and thus, likely to be a threat to her for the foreseeable future is utterly depressing.

Some bullets to summarize:

• We monitored this board a lot back in the fall--it was very helpful. 
• If we could have done Maudsly, I think we'd have been further along.  We just couldn't afford for one of us to quit their job.
• Children's Hospital in Denver gets our whole hearted support.  The staff was outstanding and the hospital was super accommodating.  When we are able, they will be the recipients of our charitable donations.
• The Ronald McDonald House across the street from Children's Hospital was a god-send.  The staff and volunteers couldn't have been nicer and the better part of 2 months there cost less than one day of IP treatment.  This included dinners brought in and prepared by volunteers every night as well as many breakfasts and lunches.
• Back at the ranch, two months on, my wife and I spend seven hours a week during our 9-5 jobs carting our D to doctor's appointments.  The jobs were already stressful--they are more so now.
• While family and friends have been very supportive, I think we need to enter phase II of educating them about what it means to have a D with anorexia.  Like us, with the return of physical health, they want desperately for our D to be cured--she is not--not even close. 
• Our greatest frustration is that we went from a really wonderful supportive IP program to 2 hours a week with the T and a 30 minute visit with the nutritionist.  The treatment team (those that have professional training) are great--it is just not enough.  Leaving Denver it was like driving off a cliff.  All too easy for the ED to creep back in.

Justifiably or not, I feel not so much helpless as angry that we don't have a better option at this point with respect to post-IP treatment. 

I do appreciate this board and other's stories of success.  I think I appreciate the stories of struggle even more.--John 

John,

I am thrilled to hear of the progress you have made, and your positive experience in Denver. I know how far you have come - I don't think anyone on this board have experienced weaning their daughter off a feeding tube so far...

I couple of comments - I think you realize what a critical time this is. The transition from the structured environment of IP to home is when most relapses occur. I am sure you have investigated what your options are, but it does not sound to me that the degree of support will be adequate for her to maintain her weight and continue making progress emotionally.

We did Maudsley after our daughter was released from the hospital - and we didn't have to quit our jobs. I took leave under the Family and Medical leave act - max 12 weeks, of which I used 8. Those two months of constant supervision and support made a crucial difference for my daughter. When she was released from the hospital she was still in the grips of AN thinking, by the end of those two months, they had diminished tremendously.

The other option would be to look into OP day programs - do you have any locally? Some will allow time during the day for school-work - a reduced schedule, but enough to somewhat keep up.

I agree with WM - choices are great within a structured environment, however, you may find that less choices will create less anxiety and increased compliance.

I wish you all the best - you should feel proud of what you have already accomplished!

Thank you again Laura and CQ,

This board is amazing to me.  The support and the experience pasted on by others has truly been a blessing to me.

I remember that success stories on this board kept me going when we started this ordeal 9 months ago; so here's our "mostly" successful update.

After a good start at a partial-inpatient program, my 16 yr. old's daughter's ED fought back with a vengeance.  She went through periods of out-of- control anger, cutting and severe depression.  I stayed the Maudsley course and she is now at 5'3', 103 lbs. I will say that it's still a battle to keep her & hopefull increase above this minimally healthy weight & I still need to average 3000 calories a day (sometimes not easy with a teenager who is now regaining her social life).

On the positive side:  she is back at school and  much less pre-occupied with weight.  She is HAPPY most of the time, eats her large, calorie-dense dinners in a normal amount of time without blinking an eye.  She REQUESTS  foods that she would formerly stare at as if I had asked her to eat a plate of worms (pizza, fried rice, cookies).

I do attribute part of our success to finding a combination of medications that have let her "step away" from the ED. . .although a small part of her is still clinging to it with both hands.

But every day is a little better & I NEVER thought I'd be able to say that just 2 months ago.