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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If you need help using the forum please reach out to one of the moderators (listed below), or email us at bronwen@feast-ed.org.

Margarita
I got in touch with Tatyana yesterday and sent her the following.mi am new to ADT and F.E.A.S.T.

My 17 year old niece has been anorexic for 4+ years. She has been hospitalized many times and has been to 7 residential treatment centers: Renfrew,, Remuda in AZ, Walden in Boston to name a few. She is home again now. Not eating. She refuses to take any medication. Plan now is no more in patient treatment. Live at home..see dr for physical monitoring and if weight loss is life threatening then hospitalization with possibility of feeding tube ( she has not had one before ). Talk of in home feeding tube is being considered although my sister believes my niece will simply extract . Psychological treatment and care from a nutritionist continue. I want to help my niece.. What can we do? Thank
M.W. Guerra
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perdido
Welcome to the forum, it is a wonderful place where people can get support for their ill loved ones. Your story is not new, many folks have loved ones who went through many expensive treatment centers and are no better.
My d was hospitalized for low heart rate and malnutrition in September 2011, they said to let her eat maybe 11 foods and I new she would die that way. I searched and found the Maudsley Method and started taking control of my Ds food. We used the Magic Plate to help our d back to full nutrition.
We can help your d help her d, let us know how we can help.
Hugs and strength.
Slow and steady
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Red
Margarita, can you direct her parents here? Some people have successfully refed their children/young adults after many years of illness - it can be done!
The future is not set; there is no fate but that which we make for ourselves.

"Not my daughter, you bitch." Mrs. Weasley
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Margarita
Red wrote:
Margarita, can you direct her parents here? Some people have successfully refed their children/young adults after many years of illness - it can be done!


I can direct them here. What should I tell them to do. Just tell their story
M.W. Guerra
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GettingThroughIt
Margarita, I can only imagine how incredibly difficult this is for you to just have to sit back and watch.  Like Red said, the first step would be to give her parents this link.  Yes, they can tell their story and they can also browse the threads.  I am sure that they will be able to relate to many of the issues and topics that other members have posted about.  They can also use this to learn about the Maudsley Method and magic plate.  It sounds like magic plate is just what your neice needs.  I'm not sure how much you know about this approach but magic plate is basically where the parents take total control of nutrition and life stops for the child until they eat.  If they still don't eat, most parents will give them supplements and many even will take them to the hospital for a feeding tube. 

Sending lots of hugs...I know how difficult this can be!
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SiriusHertz
There was talk of an in-home feeding tube with us too, but we fought it - there's just so much that can go wrong with them, as one of the RNs pointed out when the insurance was trying to push our D out of the hospital. Removal, mis-placement of the tube, asperarating food (sucking food into the lungs) were all mentioned, and while we were hospitalized with a tube in place the staff was x-raying D periodically to ensure the tube was still in the right place, monitoring her bed's angle to ensure she wasn't laying flat while feeding, etc.

It sounds like your neice has a plan C in place (hospitalize her with a feeding tube); for us, plan A is to eat, plan B is to use a high-calorie supplement if she won't eat (Boost or Ensure, for example) - to replace all the calories she hasn't eaten. Having an emergency backup plan in place is important, but it should be an emergency backup, which means she has to start eating.

If I can ask, why no more inpatient - just too many have been ineffective, or insurance not paying for any more, or ? Have any of the treatment centers she's been through used FBT/Maudsley?

Welcome, I'm sorry you had to find us but glad you did. This is a wonderful place full of caring people with great experience and advice.
New Mexico USA | Step-Daughter dx. AN on 10th birthday (2012) | Still fighting back

The most beautiful people I've known are those who have known trials, have known struggles, have known loss, and have found their way out of the depths. - Elisabeth Kubler-Ross 

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YogurtParfait_US
Margarita,

They can lurk without joining, join and lurk (by joining they get access to all areas of the forum), or join and post--whatever they do is good, and may help their daughter!!

YP
"Hope is a wonderful thing ... but hope by itself is not enough. Hope is the reason to take action, to make a plan and then to change the plan when it isn’t working - over and over and over again if necessary." Hannah Joseph (Let's Feast Friday Reflection, "Just Keep Going," Friday, March 3rd, 2015)
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Margarita
Thank you all for your welcome. To answer the question about why no more rehab centers....she has been 7 times..o several more than once. My sister and husband feels she is beginning to use these as a crutch. She eats while she is thee. Is compliant with every aspect of center's requirements. But as soon as she returns home she will not eat.

I am trying to get my sister to get on this forum. She is so discouraged and worn down.

They have tried Maudsley. Has anyone ever sat with their child , watched them knock food to the floor, start again and still get nowhere . ED is so powerful
M.W. Guerra
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YogurtParfait_US
Yes. Knocked on the floor. Yelling. Hitting. Hiding. In our collective experience, we have seen it all ...

YP
"Hope is a wonderful thing ... but hope by itself is not enough. Hope is the reason to take action, to make a plan and then to change the plan when it isn’t working - over and over and over again if necessary." Hannah Joseph (Let's Feast Friday Reflection, "Just Keep Going," Friday, March 3rd, 2015)
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Margarita
And so where do you go from there? Has anyone ever tried having child live with other family members. Does change of environment ever work.
M.W. Guerra
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YogurtParfait_US
There are as many stories here as families. Persistance and firm compassion, combined with a policy of "life stops until you eat" (LSUYE) seems to be effective for those for whom FBT works.

In some cases, refeeding proceeds gradually, with the parents gradually increasing the food amount, so that each meal or each day means eating more than before. Leverage is used--a sick kid who isn't eating doesn't get to do activities, for example. Others make use of a computer or cell phone contingent on meal completion. For college-aged kids, attending college is a privilege for the healthy, not for the ill, so getting back up to a good weight and developing the skills (and healing) needed to maintain weight is required.

Some families find refeeding easy, but most don't. Meals can be very long at first--we have had many 2 hour meals. But, when it comes down to it, my daughter wants her life. She wants to play with friends (can't do it till you've finished dinner), to ride the bus to school (finish breakfast--the bus is coming!), to stay wherever we are on vacation (only kids who finish their dinner can stay on vacation--not finishing means mom or dad has to fly back home with you).

It helps to already have a parenting style where kids believe what parents say (i.e., where there has been follow-through and consistent parenting), but families who didn't have that well established have also been able to feed at home.

Also, as for treatment centers--there are some, not most, but some, which involve families and prepare for continued feeding at home. Kartini is one of them. I don't know what clinics your niece's family has tried, but if they will be trying again, it is important to choose a clinic where family is involved in feeding at the clinic, then in day treatment, and that prepares for success in the outpatient setting.

I am not speaking from experience on clinics--my daughter was never in a treatment program. She is 7, and we refed at home.

YP
"Hope is a wonderful thing ... but hope by itself is not enough. Hope is the reason to take action, to make a plan and then to change the plan when it isn’t working - over and over and over again if necessary." Hannah Joseph (Let's Feast Friday Reflection, "Just Keep Going," Friday, March 3rd, 2015)
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AnnieK_USA
There are many great links from the introductory thread Getting started here at Around the Dinner Table Forum to our F.E.A.S.T. informational website, with up-to-date information about EDs and treatments.

Our ATDT Hall of Fame contains many excellent posts and threads exhibiting the experience and wisdom of the many parents of those with EDs who have been posting here over the years.

Here are a couple that relate to refeeding:

How to get a stubborn anorexic to eat

My own daughter is 25 and first manifested anorexia at age 11. She has had all of the EDs. When I first found F.E.A.S.T. and ATDT she was 21, and I was in despair, as she moved between anorexia, binge eating and bulimia with laxatives. From reading and posting here, I got some solid ideas about how to get my daughter into effective treatment, and after several attempts at different treatments, we finally found a therapist who has done wonders working with her, and we have hope for the future.

Eating disorders are treatable, even though they are very serious psychiatric illnesses with physical consequences. Refeeding is just the first step, and it takes a long time being held at that healthy weight, and dealing with comorbid disorders if necessary, to get into remission. It sounds like your niece has had numerous treatment failures and is suffering mightily because of that. So did my D. We just kept trying until we found a way to move forward. I am so grateful for having found the resources here, or I know my D would still be foundering, and would maybe not even be alive.

We welcome you and would welcome your sister here. Watching a child and loved-one be so ill, both mentally and physically, is the worst thing I have experienced, and this forum and F.E.A.S.T. exist to help other parents/caregivers through this. 
Daughter age 28, restrictive anorexia (RAN) age 11-18, then alternating RAN with binge eating disorder and bulimia with laxatives, is in remission from EDs for 3 years after finally finding effective individual therapy. Treatment continues for comorbid disorders of anxiety, ADD and depression. "Perseverance, secret of all triumphs." Victor Hugo
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Red
Ed is horribly powerful, but together, you can be more so. One of the reasons she may have relapsed is that she wasn't bought to a high enough weight and/or allowed to stay there long enough for her brain to heal.
The future is not set; there is no fate but that which we make for ourselves.

"Not my daughter, you bitch." Mrs. Weasley
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