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

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neverthought
My 21 year old daughter has been at home for just over a year now to deal with anorexia. She took a leave of absence from uni and we have been re-feeding. She is now weight restored but we don't know how to move forward. Until now she has been happy to just be here at home, but now it is driving her crazy. That said, she has refused all options we have suggested to help move her forward. We have offered to help her go back to uni (with safeguards and supervision in place), to support her while she takes a class locally or gets a part time job. We have suggested further therapy (two therapists over the last year did not help her) or relocating to spend time with her brother or sister in California and getting supportive treatment there, but all these options have been refused. She says she "needs a different option" but she/we can't figure out what that is. She has been brave and compliant throughout her re-feeding but I believe that she has become so isolated that the thought of re-engaging with the world has got her terrified. We were thinking of trying some type of supportive outpatient program to see if that would help, but I would love to receive some advice from those on the forum. I have been reading avidly for months and appreciate the insight that only those dealing with this can understand.
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Morgana
You've done really well to get your d w/r! The process of refeeding is so isolating, it is understandable you and your d feel stuck now.

It seems to me the options are too much of a step from where she is now. What about making a list, starting with very small things just slightly uncomfortable for her, such as going to the post office, buying milk, saying hi to a neighbour etc, and work up from there, to things like visiting a friend for an hour (or going with you to visit a friend or relative), spending time at the library, shopping at the supermarket then having a drink in a cafe, then on to a part time class such as an informal weekly art class or craft group and so on. As she gains confidence from exposure to a variety of situations and social settings she may naturally find the elusive different option. If not, you can make a new list to work her way up to visiting with her siblings in California or a part time job.

15yr old d. June 2014 stomach pain. Medical investigations until Feb 2015, referred to CAMHs dx food anxiety. Kept restricting and losing weight until July 2015, medically unstable. Began intensive re-feeding at home. Re-evaluated by psychiatrist, dx Autism Spectrum Disorder and Atypical AN.
Found out it's actually Typical AN.
IP from Oct 15, ng tube Nov. Re-started eating food July 2016. Discharged from IP August 2016 97% weight for height.
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Torie
I agree with Morgana - it sounds like your d is pretty overwhelmed by the world right now ... and understandably so. Not long ago, she couldn't even feed herself properly - it takes a l-o-o-n-g time to get their sea legs back. One baby step at a time. She's doing great! And so are you! Give yourselves a well-deserved pat on the back and hang in there. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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mjkz
It is always encouraging to hear someone other than younger kids get weight restored and allow their family to help.  I have to agree with everyone else.  When my daughter has been inpatient for long periods of time and then comes home, we run into some of the same kinds of issues.  What I have done is encouraged her to get a volunteer kind of position and usually it is with animals just to get her reintroduced to the world.  My daughter has volunteer at the humane society, has volunteered at a wild animal rescue facility, etc.  She did once too volunteer at a local music society where she got into all the concerts for free by being an usher.  She meets people there who are all interested in the same thing and that acts like a ice breaker. She finds it hard to start conversations and make small talk.  When she is at a place like the humane society, they end up talking about the animals.  It really helps build her confidence in her own skills, gets her used to being around people again and helps just get her out of the house and doing things.  I usually try to let her do volunteer stuff first rather than a job because it is far less pressure and she can more easily schedule that around doctors appointments, etc.

Keep up the great work!!!
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neverthought
Many thanks Morgana, Torie and mjkz. Your support and advice is much appreciated and has made me realize that we need to re-evaluate our idea of what moving forward means. As you suggest, I will give some thought to "'baby" steps of progress that may be easier for my daughter to embrace. It makes a lot of sense, thanks.
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Psycho_Mom
Hi and Welcome,

You are doing really well. It is not easy (as I'm sure I don't need to say) to restore the weight of anyone who has an illness which causes them to be resistant to restoring weight. You are also doing well to do as much research as you can, and to reach out to for help, support and advice. 

For next steps after wr, I'd first make sure that your d is really wr. Have you plotted a growth chart from any information and records you may have, and figure out what the best weight range would be for her individual history? MAny on here have found that goal ranges have been set too low. And keep in mind that a normal female keeps gaining weight until her mid 20's. Brain healing takes time, but basically, if you don't see any improvement in symptoms after a while at the weight she's at, there is no harm and a lot of potential benefit in adding a bit more. 

Other steps you can take, if you feel that d's physical health is optimum, may be some kind of therapy to address anxiety. CBT is the standard and generally accepted to be the most effective type of therapy for anxiety. Do you know what kind of therapy your d had previously? IF it was "just talking" or talking about "her issues" or some other kind of talk therapy, then no, that is not a type of therapy that is effective for someone who is underweight. CBT is a more practical way of changing behaviors. I'm no expert, so search on this site for better definitions.

I often heard from my d the same thing, "I can't choose any of those options, I need different options!" Choices can be overwhelming when you've got anxiety. Early on, my d needed me to make choices for her. When I made them, she'd whine and fuss. She needed me to take responsibility for the choices, and so I did that for her. You can always change later if it's not the right thing.

All the options you and your d are considering sound like big ones. Maybe start with small decisions she can make, with your help. You could, for example, say, "you need to do something that gets you out of the house for a few hours a week." (Ie this is not a choice--you're deciding for her.) "You could volunteer at an animal shelter or you could take an art class. Which do you want to do?" (Offer only a few choices, that you've already checked out and know will be practically doable.)

If that's an super hard choice, then start with an even smaller one. "You need to talk to someone you don't know one time this week. You can go the grocery store and say hello to the cashier, or you can walk down the street and ask someone the time."

I dunno, but do you get the idea? Small steps. Small doable steps. That build to a goal on which you both agree: (probably) that she is able to have a healthy, independent and happy life.

And the choice of going to stay with brother and sister? I dunno. She's doing well with you, and making sure an anorexic eats enough is no small thing. MY d is nearly well (2 1/2 years post wr) and I still have to watch her and feed her high cal meals and snacks. I'd tend to really, really, not want to risk, by moving away from you, any gains your d has made.

Please ask lots of questions, and again, welcome.
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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Psycho_Mom
Oh, also:

we did a DBT family skills class and it was great for all of us.

Freeing Your Child from Anxiety by Tamar Chansky is the book I recommend for anxiety. Nevermind that it's geared towards younger children--still very useful.

Also you may want to consider medication for anxiety/depression? My d began taking an SSRI after wr and it helped her just be more herself. Malnourishment is a huge trauma for all bodily systems, including the brain's complicated seratonin levelers. Sometimes an SSRI or other appropriate medication can help get things working properly again.
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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Psycho_Mom
The usual form of DBT has the components of skills class, dbt individual therapy, phone coaching (for in-the-moment needs) and something else I forget (do search this site for better definitions than I can give!) And it includes four modules, on Distress Tolerance, Mindfulness, Emotion Regulation, Interpersonal Effectiveness.

BUT there is a newer form and module developed for adolescents. I am not sure if this is a standard form, or if in other places with other practitioners it would be different. Our course was led by a woman who studied and worked with Marsha Linehan, and who travels the country teaching DBT. It was a once a week class for two parents/caregivers and one adolescent, who needed to be in individual therapy. The course was 6 months, followed the same format but included an extra module.

A key idea was that parents and kids were supposed to do the course for themselves. In other words, these are skills useful to everyone, and the kid isn't singled out because s/he's messed up. The course was very helpful to my h, in particular. 

Standard DBT is more designed for under- or out of control behavior rather than the over-controlled anxiety behavior more typical of those who suffer anorexia. So we often kind of did the exercises backwards or with different emphasis for d.

There is a new DBT module specially designed for those with depression and anorexia, called RO-DBT, which I think looks SUPER promising, but I am not sure that it is very readily available. You could contact the Linehan website for info on practioners in your area.

best wishes,

 


D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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neverthought
That's really useful feedback, Psycho_Mom, thank you. The first therapist my daughter saw used CBT, the second one was DBT, but on reflection it was way too early and she was not ready to be responsive. I will look again at DBT but more importantly, I will try to be much more patient and see if we can start with some smaller steps forward.
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sunnyday
I think there are two kinds of DBT.  There is DBT-adherent and DBT informed.  I think the DBT-adherent is evidence-based.  There are four comprehensive components to be adherent DBT.  I think the last component is "therapy for the DBT therapist" because many DBT therapists handle very difficult situations around the clock.  The DBT therapist has a weekly meeting with other DBT therapists to help them review, process and stay on track with DBT.  I don't think DBT-informed has all the components and the therapist may have less training.

Hope this helps....[smile]
Daughter diagnosed 2010 (9th grade) with AN/Binge/Purge.  D. had brewing ED thoughts as early as 4th grade. Constant battle with ED from 2010-present.  Co-morbid anxiety & depression & suicidal thoughts & self-harm.  Most recently in intense DBT/ED program outpatient . Weight restored but not happy about it.
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hopefulmama
You and your d have done heroic work. You have already received wonderful advice. I just wanted to echo some of it that we experienced. We made my d stay home from university until she had a strong foundation of recovery under her belt. It was a very tough time for her. Peers were moving forward and she wasn't. Even when the ED was minimized she had to rebuild her life and it was overwhelming.

My d first had to gain some weight. It turned out she wasn't back on her historical growth curve. Once she got back there, things did improve, but it was still hard.

She volunteered at an after school program, and later worked a few hours a day at our friends' dental office.
At this stage, life was still exhausting for her. As much as she wanted to move forward with her life and we wanted her to move forward, it was a much slower process than I imagined.

DBT was super helpful for us. I was able to incorporate the skills into my life and challenges dealing with my daughter. It helped me a lot and seemed to help her see that I was using it. My d had at least a year's worth of intensive DBT before it actually started "working."

Other ideas might be a class at an adult education program like art or writing. It is almost like they need to relearn how to do life and we needed to do this slowly.

Eventually, my d went to university. Now that we are a few years removed from these challenging times, the time she took off that made her feel "behind" doesn't seem like such a big deal anymore.
Enjoying my 23 year-old daughter's achievement of active recovery that was made possible by the resources and education I found on this forum.

Don't give up hope!
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