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3katz_USA

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Reply with quote  #1 
I've been thinking a lot about what I heard reported as Mark Warren's comment at the FEAST conference, regarding FBT.  I haven't yet had time to watch the tapes, but it's my understanding that he made the point that FBT/Maudsley clearly does not solve the problem for some large-ish portion of the patient population (is 60% the correct number?).  So, while this methodology has the best track record, it still isn't going to be the solution for everyone.  And my understanding is that he went on to make the point that, if your loved one is within the group for whom "by the book" isn't getting the job done, then by all means don't "jump off the boat" but instead try to find ways to make modifications so that it could work for you in some altered format.

I really like this concept, because there is so much about the FBT approach which has made sense to me as I have learned about the illness, and as we have made our way through this journey with our D.  But I am struggling to wrap my head around ways that we could modify the FBT approach to try to make it a better fit for our family.   I don't want to go into chapter and verse of our specific situation - suffice it to say that D has restrictive anorexia for more than 3 years now.  We tried "conventional" treatment with zero success, then switched to FBT and got her fully weight restored and began working our way through Stage 2, and we hit a point at which everything just seemed to implode.  Co-morbids are serious and perhaps were not getting enough attention quickly enough, but every single aspect of FBT was a constant constant battle and the only time it wasn't a battle was when she was busy creating loopholes that we often didn't find right away.  We are good parents, and reasonably vigilant.  We made big-time serious sacrifices to try to make FBT work for our family (I'm talking about walking away from jobs, etc.).  We gave FBT a real effort, but all of our progress is completely gone at this point and we are pretty much back to square one. 

So looking ahead, I am trying to understand what sorts of modifications Mark Warren might have had in mind.  Are there members out there who have made modifications to the protocol that helped them to get past an impasse or get to a more long-lasting success?  I have a little time to think this through before we will be in a position to implement a plan.  I am trying to FORM a plan, and would be very grateful for suggestions.   I am not sure what the hook is here - does FBT fail because a kid is particularly strong-willed, is it a particular personality type, or is it just because for some kids the illness is so very very strong, and the anxieties are so very very entrenched?  All of these things are true at my house, and it has occurred to me that maybe I have to figure out why it didn't work in order to come up with a work-around, but I don't know that I have the skills to do that. 

Thanks in advance for any input.  XO

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Reply with quote  #2 
3K,

I don't have answers for you and my daughter is much younger, but she has pre-morbid anxiety disorder with pre-morbid OCD or OCD tendencies, so we are dealing with a complex case, as you are. My understanding is that those for whom FBT "by the book" doesn't work are these more complicated kids.

We are definitely in the "modified Maudsley" camp. Our main modification is that we are staying in Stage 1. My main goal is to keep my daughter safe and at a healthy weight and to help her learn how to feed her body. I feel the best way to do that is to keep her on a supervised, orderly eating program. We were doing Maudsley "by the book" at first, and forays into giving age-appropriate independence (i.e., taking her snack out to recess like other kids do) did not work.

My daughter currently has one unsupervised snack per week--it is an after-school snack on a day that she has a drama class that she goes to straight after school on the school bus. The class has a 'snack time'. I have not asked the teacher about Olivia's snack time behavior. Maybe I will, maybe I won't. So, I don't know if the snack is getting eaten. The snack, by the way, is a half-banana or other kind of fruit.

My daughter has asked for unsupervised snacks, and has told me she can eat lunch on her own. But right after she does this asking, the very next day, she has a bad meal. So, I know that leaving things as they are, with supervision, is most appropriate.

MM assumes that sufferers will become self-regulated eaters. I talked to Dr. O'Toole about this, and she feels that many sufferers, while they can learn to feed themselves, will never be "intuitive eaters." They will need to eat on a plan, and keep themselves on their plan, even years after "recovery." And, she also says that this is a "relapsing illness"--"relapse is common and it isn't anyone's fault." BTW, we have not had treatment at Kartini, but I respect Dr. O'T's years of treating young AN suffers and seeing how their histories unfold. Her view is that keeping a kid at a good weight and protecting them physically (and mentally) from the damage of low weight is a home run. By that measure, I'm headed for the hall of fame!

We also made sacrifices to do FBT (my husband didn't work for 3 months and has had negative impacts at work. He still does, however, have the same job). I don't want to have to go through that again. I don't want to have to use a hospital or a treatment program because there is nothing good close enough to us to allow us to keep working and keep our special needs son well cared for, all at the same time. So, I feed and supervise. I will keep her safe. And, I feel that the years of safety and nutrition she will get on my watch will prepare her for a healthy adulthood.

I also feel calmer with this decision. Stage 2 will present itself to us, not the other way around. In the meantime, we feed our girl, have a supervised eating plan at school, treat premorbids, and help her to have a happy and normal childhood despite her challenges.

Other modifications: FBT encourages broadening the diet and including "fear foods". We have backed off on that to have a more peaceful and stable eating environment. My husband and I alternate feeding every-other-day on weekdays, and we have different approaches. He only serves sure-fire favorites. That means lots of fried rice, egg dishes, and sukiyaki. If he makes something that Olivia may not like, he serves her leftovers of highly preferred foods. I push the envelope a bit more--for example, Olivia likes pasta, and I made a new pasta dish with an Indian-inspired sauce (I left out the cumin and red pepper flakes, and used all chicken thighs. I also puree'd 2/3rds of the sauce (she complains about chunks of tomato or onion in sauces--but note I didn't puree all of the sauce, and next time I will puree less of it!), removed, cut up, and re-added all of the chicken, and served Olivia's portion by scooping sauce from the edges so she didn't get any big chunks of chicken--she has always had problems with chicken). She smelled it and said, "this smells weird." I said, "that's your dinner, and the sauce is amazing." She started eating and as she was gobbling up the yumminess, I said, "Whaddaya think I used to make it so yummy? It's something you eat all the time, but not in a pasta sauce." She was amazed to hear that it had cinnamon in it. She ate it all up, and both kids loved it. So, I think my husband and I have a balance in how we are feeding our daughter. He doesn't mix it up, and I mix it up a little, mostly with the goal of preventing rigidity rather than of broadening her diet, since she has a broad enough diet.

Yours, from the land of seemingly perpetual Stage 1,
YP

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"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)
WeNWinning

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Reply with quote  #3 
The way we have approached this process with modifications to FBT is to address each layer, one small step at a time.  I think the key for us and perhaps for others whose child has comorbid conditions is to assess that properly once they are fully WR and maintained for 6 months, and then find the proper treatment and T for the comorbid conditions.

Where we had problems was trying to use the same FBT's (two of them at different stages) for individual T for my Y/A D's comorbid conditions.  It clearly did not work because she really needed experts in treating those comorbid conditions. 

I also found that because my D had AN long term and had entrenched thoughts and triangulating behaviors, that having the same therapist for FBT treat her individually, did not work.

In some ways it was a conflict of interest, because the T's often got fooled by this triangulation.

I think any T that works with our children individually needs to understand ED's and be able to practice an approach that keeps the focus on our child's ability to learn coping skills, problem solving, and good self-care.




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WenWinning (formerly wenlow) - a Mom who has learned patience, determination, empathy, and inner strength to help her young adult daughter gain full remission after over a decade of illness and clinician set inaccurate weights
Cherryusa

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Reply with quote  #4 
3Katz,

We are doing a modified FBT now as my d transitions home from res program on a meal plan. I don't have time to post as we are home for a 3 day visit from the PHP part of res program. I see the more positive benefits for my d at this point than I have since she has been ill. She is definitely weight restored and has had very intensive therapy and behavior modification of which I have fully participated in. Our th is Maudsley trained an does not have opinions as to one way is right and one is wrong ,but what works and how, short and long term. I have been to Kartini, UCSD,Laureate ,ERC ,spoken many times to Dr. peebles on the phone and given home feeding everything we have including my husband scaling back for a significant period of time from work. Find what works and make sure weight is maintained and other issue are properly handled. Best of luck to you ,this sucks!
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Reply with quote  #5 
Roxy, it sounds like you have had the grand tour of treatment centers. I'm so sorry the road has been so very very long. 

Sending prayers and warm support,
YP

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"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)
perdido

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Reply with quote  #6 
What we have found and I'm not sure I am saying that anything is right is that we are basically in stage 1 for the long haul. Dr. O'Toole said consistent calories for a long time, as in until they are ready to go to college and have a contract. We tried to go to stage 2 and it just wouldn't work. D needed us to monitor her and if we didn't then she wouldn't eat enough.
So firm, consistent calories for a long long time are where we are at. D eats plenty well with us watching every meal and now we are dealing with the comorbids.
Staying in stage 1 has allowed d to continue eating, continue growing in height, 3+ inches to date and continue moving forward.
We have now lost school because of the comorbids but we don't care. School can wait, she is young and bright. She may relapse and we will have to deal with that. If we have to feed her for next 30 years well that is what we will do.
I don't know what else to do but feed her. I hope with the TM to deal with her anxieties we will move forward and she can move forward.

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gobsmacked_US

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Reply with quote  #7 
I guess we never did full Maudsley, because we never had a Maudsley therapist, so we pieced things together.

Things that I think have worked for us, whether FBT or not:
- a short-term hospital stay got her eating again
- staying in phase 1 (we didn't do this on purpose, but looking back I think it helped) and always staying vigilant
- magic plate (we started with meal plan and magic plate was necessary for us)
- support for Mom & Dad without daughter being involved -- things started improving when we stopped making her go to therapy
- not talking about it much with her, just doing what we needed to do and trying to find ways to enjoy each other as we went along

I do recognize that what we did had a lot to do with us as a family, with our daughter's personality, and with the care that was available to us. We had always been a close family who shared meals -- meal plans were not going to work. Our daughter has never liked to talk much about her emotions (there's a word for people like her), and therapy was too painful and talking about it was too painful. Just taking care of it and talking about other things meant she could move on when she was ready without her pride being hurt. I felt a need to have professionals keeping an eye on our case, so me and my husband going to therapy without her worked.
Cherryusa

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Reply with quote  #8 
3katz,

How about calling Cleveland Center for Eating Disorders , speak with the intake coordinator and ask to discuss your d case with Dr. Warren directly( or email him). Get his opinion and feedback. It may help. If you haven't look at their website. I believe he highly endorses DBT for very difficult cases and they have put together a group just for that. Maybe not'what you are looking for but do they have anything like that in your area. Our has had lots of DBT but timing and the right clinician has helped her begin to really use it. Of course we still have to see if recovery can be upheld at home ,I know that is yet to come and it will eventually happen. I don't believe we could of ever gotten our d weight restored without big time outside help. She recently had extensive psychological testing and it appears she has some trait related issues that have compounded the Ed problems. No set shifting or executive function deficits no ADD, or much of anything else. I was shocked. The change in her behavior has been dramatic.
neverloseheart

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Reply with quote  #9 
Our story is my girl was inpatient initially for 5 weeks, then PHP and then IOP until weight restoration, we tried to get her back to school and failed miserably and struggled with ineffective outpatient treatment and were in and out of the hospital for the next 5 months.  We then switched to FBT.  Our FBT was our psychiatrist.  Right away she decided the manualized version wasn't going to work for our girl and started her in DBT which was a group and individual.  So we had loads of outpatient attention for the first 4 months.  The FBT was modified to let us get her off the meal plan whenever we wanted.  We used rough counts of calories to get her off and it worked beautifully for us (I know most people wouldn't want to do that) and it's still the fallback for my d to make sure she eats enough.  We also didn't give up the blind weights until the FBT knew her very well and was able to help her through that.  

Then after the DBT group was over, my d had just the FBT and her individual DBT.  Though the DBT was great, the lower level of care didn't work very well as her behavior was totally out of control (I can't bring myself to relate these things on the internet) but she ended up in home lockdown for about a year with an adult with her every minute unless she was in school and during that time, the teachers were to notify us immediately if she wasn't in class.  There wasn't anything like a sharp object anywhere in the house.  No locks on doors.  No internet access.  Phone restricted to calling parents or therapist only.  No money allowed.  No learning to drive.  VERY UNPLEASANT FOR EVERYONE!  That was the worst part.   But, I now see that as the time when she really got better.  If we had put her in a residential at that point, it would have started an unending cycle and she would not be the wonderful young adult she is today.

Treatment of comorbids and giving very little independence seemed to be the key for us.  The ADHD was a major factor in the behavioral problems but I realize now they were exacerbated by the refeeding irritability/brain healing.  Reading up on the ADHD was the way I realized the extremely strict parenting was needed and that led me to my plan that my girl had to earn every scrap of independence and she had immediate consequences for any bad behavior.  The phone privileges were on and off many times but having immediate unvaried consequences was so important in turning the corner.  I'm not sure what is going on with your girl 3Katz so I don't know if this info helps, particularly because it sounds like you are back to square one.  

I think the brain healing can take way way longer than anyone realizes and the comorbids are just fuel for the fire in that setting.  I didn't get much help from the team except meds for the ADHD and had to get lots of books and CDs on ADHD to figure that part out myself.

Also I would like to say that the girl I am describing is nothing like the loving, polite, responsible, mature and hard working girl that I have today.  She is still working on her social anxiety and likes her schedule to be just the same every day.  Her emotions can still get a bit out of control but she can rein them in on her own.  It was h*ll but really worth it so I hope your persistence will also pay off.

PS ROXY THAT IS WONDERFUL NEWS!!!!

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Neverloseheart
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Reply with quote  #10 
never lose heart,
Thanks for sharing your story. I'm feeling stuck and its really good to hear that even though it had it really tough you made it through. It renews my hope.
Gratitude

3katz_USA

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Reply with quote  #11 
Folks you are all so wonderful for sharing in this way. Here's the deal, or some of it. We haven't quite done as much of an ED world tour as Roxy's family, but almost. D has already treated at the ED unit of our local psych hospital (which stinks), 2 different residential facilities (one was Renfrew where she only stayed about 4 days and I DON'T recommend it - the other one is pretty solid and she is there again now), CCED, Hershey and CHOP. I've had the pleasure of working with both Dr. Warren and Dr. Peebles. For a variety of reasons, I don't believe we could ever get D to cooperate with anything at CCED again, although I've taken note of their new DBT adolescent program and if anything was worth a big effort, that would definitely be it. Roxy, no, unfortunately there is no real DBT closer to us than a 3 hour drive. We may have to take up residence in another city (again) to get long term treatment with a good ED team and real DBT facility.

I think I am convinced that massive anxiety is driving all of this, including the ED and the recent relapse. For some kids, the anxiety may come from the ED, but with my girl I think it's the opposite. Spent some time today reviewing recent events with a professional person and I think D's anxiety sunk the ship this last time, too. So we do have to get her weight restored (obviously, unquestionably) but I no longer believe that we have the luxury of waiting 6 months after weight restoration before we look for therapy for the anxiety. Been there, done that, failed big time. We had her weight restored for 6 months, and for the next 3 months her weight was down a little but not much and mostly holding steady until the big crash. During that 9 month period, we had a "faux-FBT" T (no one is truly certified in our area, but the one we had tried her best to guide us), and D had her own individual ED savvy T for the non-food issues. She was on and off various meds, but my threads from late last spring shared that she had a terrible muscular twitch on one of the meds, and then the suicidality hit this fall while she was trying another one. No one knows if it was the ED, the anxiety or the med, and we never will, but now she says no more meds, ever again. So we have intractable depression, massive anxiety, no relief from SSRIs, refusal to try any new meds (including mood stabilizers), and willingness to battle us to the mat every time on food issues at home. My daughter has verbalized hopelessness that she will ever get better many, many times over the past few months.

The problem is that I just don't believe that she is going to come back home and cooperate with full on Stage 1. And Perdido, God bless you and Dr. Perdido, but I know that our marriage, family and the physical structure of our house itself may not survive the battle that we believe is coming if we try to stay in true Stage 1 for a year and actually keep her from running away. (And this is where having a 17 y/o paints a much different picture than having an 8, 9 or 11 y/o. My girl could disappear into the world.) We don't want to completely turn away from FBT, but I believe we are going to have to find some variations on the theme when it comes to managing the food. We cannot fight every single battle, we just can't do it, and this child will. fight. every. single. battle. and. will. never. give. up. My visual here is the final scene of Braveheart - absolute defiance to the end, and willingness to go to the end. And there is so much more work to be done beyond just food. If I can keep her w/r and eating, I'd prefer to be spending more of the effort on other things.

So as gloomy as this may seem, I am absolutely not hopeless. I know she is going to recover but we haven't yet found the path. I do think we are going to have to work harder and smarter. I am giving serious consideration to a variation on the meal plan theme - Peebles reminds me that it is not evidence based, and i know she is right, but
i am thinking of a FBT/meal plan hybrid, with safety nets and consequences, etc. but some way to allow her to "buy" some small measures of independence more rapidly, if target weight is maintained. (The Hershey meal plan i s pretty innovative and much closer to "normal" eating than any of the others I've seen, including Kartini's.) I think her pediatrician and H and I have now learned every possible way she can trick the scale, and we think we now how to close those loopholes.

Roxy your recent experience is making me think that a big push with intensive therapy ASAP may really make a difference. Thank you. NLH, you too - although our co-morbids are a little different, your message is the same - intense treatment of those upfront until they improve, while maintaining weight. I think we erred by not doing anything serious in the way of intense therapy more immediately after w/r last time. We are definitely not going to wait for the dust to settle this time. Again, my point is that yes, of course, we have to get her weight restored, but we have a lot of work to do beyond food.

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"Love. That was what she had that IT did not have." - Madeleine L'Engle, A Wrinkle in Time
perdido

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Reply with quote  #12 
I only know what is working I our crazy little family right now. Memories of CCED and Joel taking me for a glass of wine at lunchtime......
Who knows what works?????
I love you guys and think of you often, we made it for 3 days?!?!?!?'
Thank you!
We are in for the long haul until something changes, hopefully we move and can find better treatment.
I am working on a new license, our care is nonexistent here.
What kind of disease is this that treatment is so difficult to find!!!!
IT SUCKS!

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Cherryusa

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Reply with quote  #13 
3katz,

I get it, I get ,I get it! We have had the same thing and are coming out of the war zone and have a long way to go. She is my full time job ! It takes what it takes. Hoping the best for your daughter .
Casper_USA

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Reply with quote  #14 
Count me in here. We've also been at several places -- including UCSD, where they said Maudsley wasn't going to work for us, and The University of Chicago, where it seemed like the treatment was more rigid than the patient. Marriage, kitchen, home life and finances all gravely wounded. We've got ADHD and probably OCD issues, too, and having a patient who is a teenage boy paints yet another very different picture.

What worked, up to this point: we counted calories as NLHeart suggested - he asked to stop but I would reurn to it if needed. He selects the food for the most part -- magic plate has always been a flashpoint around here. Things have slowly improved overall, but there are periods when we negotiate a lot. He has freedom -- life stops until you eat never, ever worked for us. He was allowed to swim during refeeding as long as he didn't lose weight. It was up to him to make it happen. He refuses any kind of therapy and getting him to try the ADHD meds has taken more years off my life.

My best current thinking is to keep doing what I am doing, for a variety of reasons: flexibility and variety have improved little by little, he is maintaining and growing. My husband has quit our FBT, whose sole charge was to get us on the same page, and I am repeatedly told to back off -- stop trying to add weight, leave him alone about variety, stop pushing anything that hints of Maudsley except to ensure that food is eaten and weight maintained. A boy's social development and executive functioning skills are so different at this point, so I am hoping that he will continue to use his defiant, willfull nature to back into more success and come to me at some point down the road and ask for help. He has friends and a busy social life, and that has been huge in terms of his progress. He wants to be seen as normal, so pushes himself in social settings and sometimes it pops up at home -- he'll ask for something he ate at a friend's house.

A ramble...
WeNWinning

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Reply with quote  #15 
3Katz -  You are doing your best and figuring out what will help your girl.  I agree with you that having DBT before the 6 months post WR is helpful.  What I meant about waiting for 6 months is for other types of treatments that they can actually benefit and engage in - like CBT or other types of treatments that require less cognitive distortions.

My D had those other types of therapies from the beginning and not DBT, and I think that only served to confuse/increase her distortions more and make her feel like a treatment failure.

So, timing and finding the appropriate treatment is most important.  
Sending you strength and lots of hope

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WenWinning (formerly wenlow) - a Mom who has learned patience, determination, empathy, and inner strength to help her young adult daughter gain full remission after over a decade of illness and clinician set inaccurate weights
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Reply with quote  #16 
"The treatment was more rigid than the patient..." Oh dear ... perhaps that comes from some sorts of research orientation?

YP

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"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)
neverloseheart

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Reply with quote  #17 
Our FBT was also at the University of Chicago and not rigid at all so I would hate to paint everyone there with the same brush!!!
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AnnieK_USA

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Reply with quote  #18 
At the U of Chicago ED Clinic, it may depend on whether or not your treatment is part of a clinical trial. If the treatment is that offered as part of a clinical trial, they have to stick exactly to the manual. If treatment is outside of a trial, then they can probably deviate from the manual.

My D was a subject in a clinical trial of DBT for Binge Eating Disorder at the U of C and they were not flexible at all. 

Here is the FEAST page on the subject: Clinical Trials.

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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
Casper_USA

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Reply with quote  #19 

Just to clarify, we were not part of a clinical trial.   Our FBT met her match in my kid, and grudingly acknowledged that what we were doing was unorthodox but working (meaning the weight was going on).

anotherbite_CAN

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Reply with quote  #20 
3katz- Have you thought about contacting Mark Warren?  I had a chat with him at the conference about DBT and how that worked as an 'add on'.  It was fascinating.  I don't remember if your d has done DBT.  My sense is that it would work best with an older adolescent or YA.

Also, I keep hearing about a clinician here (in Toronto) who is doing some amazing things with older adolescents and hard to treat cases. Her name is Dr. Joanne Dolhanty.  She uses Emotion Focused Therapy combined with FBT for eating disorders.  She developed this method with Dr. Adele LaFrance and they are heading off to the Maudsley Hospital in London this month to train their eating disorder staff in the model (in order in part to fuel further research).  They specialize in 'treatment resistant' eating disorders. http://www.nedic.ca/whatsnew/WorkingBetterWithEatingDisorders.pdf

Contact info for Dr. Dolhanty  (publicly accessible info): 416-488-2838 ext 2
 
 
http://conference.nedic.ca/conference/presenter-biographies/joanne-dolhanty
perhaps she will do a consult.

Here is an abstract of an early paper:  http://www.eatingdisordersreview.com/nl/nl_edt_6_2_14.html

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D dx at 10 years old in June 2011. She is now 16 and happy and healthy.  We were IP for 8 weeks and then refed at home for what felt like forever.  We chased vertical growth for years...as is typical for the age.
JH50621

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Reply with quote  #21 
You and your D remain in my prayers. 

My D is finishing up her first week of the 5 Day DBT program at CCED.  We were in the 3 day DBT IOP and had to transfer to the 5 Day due to an increase in self harm.  Her IT guided my husband and myself to document the parameters for a higher level of care.  The list was presented to our D and she repeated them back.  She challenged us two days later and the following Monday went to the 5 day program.  My h and I stood firm.  I believe that my D is where she needs to be.  We have been with CCED for nine months now and this is my D's second time around fighting this battle.  We were at COPE in Pittsburgh three years ago. 

We will be in Maudsley Stage 1 for ever if need be.  Though I really want her to gain back her independence.  She picks out her snacks and her lunch, but it is always in collaboration.  I still plate her meals.  What I have read is that it takes one to two years of doing this before the brain gets the idea that it has to change.  It'll be a year May 1st.  She needs more time than the "book" states to gain her independence.  That is OK with me.  Our FBT has been wonderful with guiding us along this refeeding/maintaining path.  She is our second FBT since we did not "jive" with the original one.  D still needs to be reminded about snack times though we made it one of her goals to "try" to remember.  My D was on three antipsychotics these past three months.  She is off all of them due to side effects.  Time will tell if she can handle life without them.

My D picks out her eyebrows, she goes up and down steps to the count of "8" even if there are fourteen steps, her urges to self harm and restrict remain high, her hands are raw from continually washing them and she refuses lotion, she has high anxiety about school work, body image, she has no friends, does not use a cell phone, and cannot attend school, and I could go on.     She continues on meds for her OCD and anxiety and we have "as needed" meds to give her if behaviors get high.  All sharp objects are locked away at our house, no pens or pencils in her room, and I observe her going to sleep almost every night since this is usually her worst time of the day for anxiety to manifest itself in behaviors.  Really hard to find "me time".                                               

She is learning coping skills that many adults never master.  I am learning them too during our DBT multifamily skills group.  I need to learn them to be able to guide her in their use.  Children learn by example and if I use a skill that she observes, just maybe she will observe it's benefits.  Will she be able to place all of these skills into her arsenal and pull them out when need be?  Maybe.  I think it takes a certain level of maturity to begin to see that there is a life to be lived beyond ED.  This is the "willingness" piece.  My 14 yo D told me , again, last night that she still doesn't want to grow up.  On that note, I will keep plugging along at this.  I have been practicing the skill of "Radical Acceptance" during this whole adventure.  It sucks! and is very hard to keep up!

I have done so much reading on this nasty disorder.  I am of the firm belief that Maudsley works because the parents become educated on how to refeed an ED child and it gives them the tools to keep feeding their ED children.  Staying WR is the key to any kind of success.  It is the first line of defense!  Also, no child learns at the same rate and no ED child goes through the Maudsley stages at the same rate.  The key is to keep the "magic plates" coming (her older non ED sister gets one just like hers).   I also recommend to keep ON your D's progress.  Make suggestions during therapy sessions.  Speak your concerns.  Email your concerns or questions.  My therapists at CCED respond if my concerns get too high.  For that, I am grateful.  Grateful in that they "get it".  I love this website.
Remember, every child is unique which makes every ED client's Plan of Care different.  There is no one treatment that fixes it.  I have learned this the hard way....and try to explain that to family members!
Remember, as the parent you have to do the work.  You have to get in the trenches.  You have to fight the fight.  And 3Katz, you could write several books!

Like you, I travel for treatment.  I have put 31,000 miles on my vehicle since we began our second battle with ED (and that is only in the past 9 months).  My ED D is my full time job and I do not get a dime for it.  No contributions to my 401K and all of her saved college tuition is used up fighting ED and co-morbids.  Yep, radical acceptance sucks!

But I love my D.  She and her sister were blessings given to me by a higher power.  She is with me 24/7, she is alive, she is WR, and she and I are learning skills to deal with this impossible illness.  Right now I am her eyes and ears in navigating this disease that she was, I believe, born with.  I pray for the strength to keep fighting.  I ask everyone to pray for strength for our family.  Is CCED the answer to getting her on track?  Right now it is.  Will she ever get back on track?  I feel like the "Little Engine That Could"......I think I can, I think I can...and with food, prayers, love, skills, and perseverance...I thought I could, I thought I could.  Lots of hills to climb up and go down.  I am doing the best that I can and I'm in for the long haul.

Stay strong.

Prayers for all!



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WeNWinning

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Reply with quote  #22 
JH5 - Amen!!!
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WenWinning (formerly wenlow) - a Mom who has learned patience, determination, empathy, and inner strength to help her young adult daughter gain full remission after over a decade of illness and clinician set inaccurate weights
3katz_USA

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Reply with quote  #23 
Oh JH I do love you. I wish you had "me time" so we could meet for coffee. You KNOW your family is always in my thoughts and prayers. I am going to push hard for D to cooperate with the DBT program at CCED -maybe we will be there together. But the CCED thing is complicated, and I won't go into it here. In any event, I do think CCED is super fantastic and they are on a great track with this DBT program.

AnotherBite, for the longest time the local Ts kept telling me "she IS doing DBT with her individual T." Silly me to believe them and not do a fact check. They were doing free form talk therapy that draws on DBT concepts. Now that I am educated I know they lied to me and they were NOT doing DBT. These resources you mention are Just wonderful. Thank you so much, I will be following up on that Dr. Dolhanty next week. That sounds really promising for us. thanks for sharing.

Casper I have noted your situation over time and always drawn hope from it. "Life stops" has never worked for us either and I have always appreciated hearing that there may be a few good side paths that might get us to the same point.

Also thanks to the ever vigilant BreathingMom who has called my attention to the UCSD conference, the agenda of which sounds like it was drafted about my D, I am now booked to go do some more learning. XO

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anotherbite_CAN

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Reply with quote  #24 
3katz...the most profound thing Mark Warren said was "the patient does not fail therapy....the therapy fails the patient". 

His talk was compassionate and illuminating and gave me hope for managing this disease through her teens.  Take a break this weekend if you can and make yourself some tea and sit and watch his presentation.  it was heart healing.

Also, the dbt he described (what they do at his clinic) when we spoke was intense and long term.  He expressed his frustration with the situation you described...where they say they are doing DBT but.....really and truly....not really.

thinking of you and your girl.

 

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D dx at 10 years old in June 2011. She is now 16 and happy and healthy.  We were IP for 8 weeks and then refed at home for what felt like forever.  We chased vertical growth for years...as is typical for the age.
gobsmacked_US

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Reply with quote  #25 
3Katz, after I read everything you are going for, my response seems piddly so sorry. Big hugs to you. I know you're doing an amazing job and hope things turn around soon.

For my daughter, as for some others I've read about here, the magic appears to have been 2 full years at a healthy weight -- I know that's easier said than done. But until a few months ago, I was feeling pretty desperate and couldn't imagine things turning around like they have. So I have empathy, and I am so sorry for what you are experiencing. Stay strong!!!
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