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mec

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Reply with quote  #76 
Laura, 

I have never seen you as a zealot or evangelist about spreading the gospel of FBT or about any therapy. You have stayed consistent to your message: "Parents need access to EBC, they need to be involved,   children need to be fed and kept safe & we need to put a stop to BAD therapy." I've been here since 2007 and those who were committed to FBT as the only approach, the evangelists, if we can use that term have moved on. There was a very specific reason why the forum was called Maudsley Parents instead of ATDT and FEAST. Those of us who have been here for a while and who were involved in the birthing of FEAST know that it has been a painful process for you and FEAST to be open minded to various EBC treatments. FEAST is at the epicenter of change because you started talking to everyone and collaborating in the spirit of helping our children. Not everyone wants to collaborate and this applies to BOTH end of the ED spectrum. 

Having said that, I am THANKFUL that when I came in July 2007, I encountered some people who had that type of zeal for FBT and for refeeding our children. I NEEDED to hear about that sort of myopic approach to feeding my d and focusing on nothing but that. However, I discovered as time went by that food was NOT enough. I was actually disappointed and sort of felt deceived, but you had been saying that all along as well as others that FBT was a comprehensive therapy, not just about the food. But I honed in those who were saying that FOOD, FOOD, FOOD was THE way to bring our children back to health and that everything would be allright once they were weight restored. My older and wiser "me" wishes that I would have heard the messages from Bryan Lask and Janet Treasure and others who recommend adjunct therapies at that time. But, knowing my state of mind in 2007, I would have grabbed the therapy and still not addressed the issue of feeding my child. We were all in pseudo EBC therapy. We had the right theory but nobody taught us how to apply it.

If people say to you right now that you are an evangelist or that we are evangelistic in this forum, they are simply calling us names because they don't have a good argument. I don't think that we have anyone here right now who would say that the recipe for ALL children is to ONLY feed them. As we learn more about the brain, all of these Doctors are teaching us that there is more to our complex children than just feeding them.

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Our 20 year old daughter has been working out her recovery from Restrictive Anorexia Nervosa and compulsive exercise for the last 10 years. She was DX at 9, re fed at home with support from local FBT and ATDT forum, and weight restored at 11.
nevermorED

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Reply with quote  #77 
What a terrific thread! I am so impressed!

Laura, as always, you hit the mark with accuracy and eloquence. 

I think in medicine, research gives us tools, but healing requires much more.

The research that gave us FBT took away blame, and in doing so allowed our kids the chance to eat again, in the safe haven of the family. This was the lifeline we were so desperate for! No more parents watching helplessly at the rail, while the professionals yelled  "swim, dammit, swim!!" to our sinking beloved child.

But for the rescue to ultimately succeed, the sufferer still needs to climb into the boat, and sometimes they can do it themselves, sometimes they need a helping hand or two or three, and sometimes they need a helicopter and team of rescue professionals.



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Red

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Reply with quote  #78 
This is a fascinating thread which, I'm sorry to say, fills me with sorrow. If refeeding, if parental learning & love aren't enough, then we're in trouble. Because that's it: that's all we have. A week ago, the local ed service manager phoned to say she was taking us off the books, ending the brief conversation with the line 'I'm sorry we never met.'

Round here, no-one's properly qualified in CBT, DBT is only for 'severe cases', ACT is only for severe adult cases. So what we have left is us, our learning & nudging, our vigilance & talking and our belief that it will have to be enough.

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IrishUp

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Reply with quote  #79 
Red, as a practical work-around, if you can take ED off the table, are behavioral therapies available for teens with, say OCD or anxiety or PTSD or ADHD and so forth?

Is this a way we can sneak through the system? Parse out as many diagnoses as possble, and get help for the "non-ED" ones, since so many clinicians can't keep their knickers untwisted otherwise?

[Or, yanno, we *could* try the thing I wrote up-thread. But I'm not holding my breath. Too hard to shout that way.]

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Reply with quote  #80 
Mods- am wondering if at some stage the title for this thread may need to change for future referencing as it has turned into a fabulous discussion which I would hate for people not to be able to search later
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Belinda Caldwell FEAST Executive Director. D 21 now well into recovery after developing AN in 2011. Inpatient 5 weeks, FBT and then just lots of time, love and vigilance.
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Reply with quote  #81 
I've just vowed not to comment on this thread and here I am doing just that. I can't comment on the services in Red's area except to say that I've heard they are being cut and that longstanding members of staff are taking early retirement because jobs and hours are being reduced. I do know that here there is only very limited access to therapeutic interventions via the NHS for children diagnosed with conditions like ADHD and nothing for those with no formal label. There are good as well as bad reasons for that. The system works at its best on evidence and need and it's right that treatment should be prioritised for those for whom there is evidence that it will work and who are in most need. The problem comes when it isn't glaringly obvious what is needed or the child doesn't respond immediately to a short course of treatment. There's the private sector of course but it's not nearly well regulated enough, even more likely to provide feathers and beads and very expensive for families who are unlikely to have insurance
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Fiona Marcella UK
kas_US

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Reply with quote  #82 
Quote:
Originally Posted by IrishUp
Quote:
"IF CBT principals can be given/taught to parents/carers are there any others can be given/taught??"


Absolutely!
...

Now, AUSed, I cannot speak for what that coordinator intended, but I think I understand the concern they may have been addressing. I myself have written many times that parents are NOT clinicians, nor should they HAVE to be.

To me, there is a difference between 'Using therapeutic tools to support your kid' and 'Being your kid's therapist'. When you train in clinical psychology to be a therapist, your instructors hammer in the importance of appropriate roles and role boundaries - really starting out of the gate in undergraduate studies (disclosure - IANA therapist now, but intended to be one, once upon a time, and still read the literature). So perhaps this person was worried about parents crossing those boundaries from Parent to Therapist, and it's not an irrelevant concern. It's just a concern that ignores the realities that there is ALSO a huge difference between being a person HIRED to do a job for a client, and being their Primary Caregiver.

The role of Parent *sometimes* crosses boundaries, in the course of filling that role, and this is even more the case when the child is sick. As long as we live in societies that will not send staff home with us, and expect us to be responsible for sick children at home unaided, well, then ...


This thread has provoked so many thoughts and feelings for me. I wish we could all sit down and talk because there are just so many questions I would like to ask and say. And honestly, so. much. emotion. Ugh. This discussion makes me feels like my d's coffin has been shut in a figurative sense. Not necessarily that she will indeed die from this, but certainly that she will never be well. Maybe it's just because it has come at a time when I am trying (unsuccessfully) to let her have a little more control.

I have to say though that this idea that parents should not be their child's therapist doesn't sit well with me. It reminds me of way back in the days when we first decided to not send our son to school. Everybody believed that there was no way we could do it. We needed the "professionals" to teach him to read, to help him develop social skills and get through high school math and science. I didn't really know any better so I just figured I would start with reading. I did it. He succeeded in learning to read and we moved on to the next thing. and the next thing. and the next thing all the way up until graduation date. Now, I wasn't arrogant enough to believe that I could teach him EVERYTHING along the way, but I LOVE him far more than any other person so I am motivated to sacrifice and learn and stumble and fall and get up and keep going. My d struggles more academically than my s, so her educational path has been less "linear" so to speak than my s's. I have had to reach out to more and more resources to both figure her out and find what works best for her. The difference though between her education and her AN recovery path is that 1. I have the advantage of having walked through many years of education myself so I essentially know what she needs to learn and just have to figure out the best way to help her through and 2. There are OODLES of RESOURCES to draw upon for her education. With the AN, I have no idea what exactly she needs to get better and the resources are fewer and farther between and again...clouded in a great cloud of mystery. But the really discouraging part is the way T's that I have talked to sort of condescendingly pat me on the head and say "Leave it to me. I am a professional." I haven't found anyone local who practices EXRP, DBT, CRT--even CBT! There are a ton of psychologists, but it all seems to be "someone to talk to"! If she weren't talking to me, I would be able to see that, maybe. Am I supposed to just "throw stuff at her" hoping something sticks? What about the possibility of bad therapy??? It seems like the risk/reward ratio is just waaaay off. Feathers and beads, Bunkam and Woo....all of that. Ugh. For now, I am just going to chalk it up to a very bad week, and hope and pray that a clear path will open up, or if not the whole path, at least the next step!

Just to be clear....none of that about my kids education is meant to convey any kind of judgment on those who don't choose the same path. I, 100%, respect each family's right and responsibility to choose the path that best fits your family and children. I just bristle when people are told (or believe) that they CAN'T do it. It's incredibly hard and can be messy, but it can be done if you choose it. In fact, now that i think about it, it was great preparation for dealing with this crazy ED.

Still processing,

Grace


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mec

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Reply with quote  #83 
Grace,

I think the comparison between schooling and being your child's therapist is not really apples to apples. A better comparison would be "would you treat your child at home and based on your skills and experience if she had a life threatening physical illness?". At least that it is the way that I saw it. But, I HEAR what you are saying about the lack of GOOD therapy and yes, no therapy is better than BAD therapy.

I don't think it is appropriate for ME to be my child's therapist.

DISCLAIMER: This is entirely hypothetical but I don't put it beyond the realm of possibility.

I mean WHAT IF when d was ill or in recovery or whatever, she would have said to me "I want to kill you, like literally I want to take a knife and stick it in you because you are running my life". I seriously don't know what I would have done with that information other than call a T and have her committed ASAP! My d did say several times in an ED Rage, "I wish that you were dead and I wish that you would have died when you were sick, etc". However, she might/could have told her T that information. The T in a professional and detached manner could have asked more probing questions to determine if my d was just blowing steam or if she really was having homicidal thoughts about her Mom. OR, the opposite could have happened. What IF, my child was having suicidal thoughts or hateful thoughts about me/us etc but she felt that she couldn't share that with me/us? She could have shared that with a T, who once again, without being wrapped up in a loving and emotional relationship with our child could have assessed the seriousness of the thoughts.

A T can also help our children tease out the various layers of what they are thinking and feeling, without overreacting or reacting at an emotional level the way a parent does, and help them process what it is that they are feeling. 


My mother is a family therapist and I have asked her in the past to psychoanalyze me or my children and she has refused every time. She says it is impossible for a parent to be able to professionally do therapy on a child because you are emotionally involved with that person and in fact you may project or manipulate information to suit you and not the child.

On the other hand, Both AMoma and YP have been trained on how to help their d's with CBT or other behaviorist therapies because they are the ones living at home with their kids 24/7. So, it isn't that we can't help our kids but we shouldn't play the role of therapist. Both of these Moms are practicing and reinforcing what the Ts are teaching their kids and they are an integral part of their children's treatment plan.

Just some thoughts....

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Our 20 year old daughter has been working out her recovery from Restrictive Anorexia Nervosa and compulsive exercise for the last 10 years. She was DX at 9, re fed at home with support from local FBT and ATDT forum, and weight restored at 11.
AUSSIEedfamily

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Reply with quote  #84 
Dear Guys,

I believe that what we are discussing is that balance between having a parent being trained to handle the times where basic skills will calm & sooth the ED moments while when the though/thinking ""reprogramming"" type of psychology/psychiatry is needed.

Then of course we are also discussing the availability of ED trained & experienced professionals who have adopted embraced the philosophy of parents as part of the recovery team & solution. 

Then in gracekl situation where ED trained & experienced professionals who have adopted embraced the philosophy of parents as part of the recovery team & solution are really hard to access then I would doing anything I could to step into the gap.

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mec

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Reply with quote  #85 
Ausd,

I am in TOTAL Agreement with you. But, since words are important, I don't think we can refer to that as playing our own child's therapist.

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Our 20 year old daughter has been working out her recovery from Restrictive Anorexia Nervosa and compulsive exercise for the last 10 years. She was DX at 9, re fed at home with support from local FBT and ATDT forum, and weight restored at 11.
Red

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Reply with quote  #86 
Irish, the lack of services I describe we're for all issues, not ed issues. The other thing, yes..in spades. In the meantime, we will have to be enough, so we shall be.
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kas_US

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Reply with quote  #87 
Hi Everyone! Thanks for your comments and for sharing your perspectives. I have had a busy couple of days and am just now getting back to respond, but I have been thinking through what everyone has said. I realized the other day after my last post that I really am jaded on just about everything T related primarily because of my own experience with the medical community. It would take a long time to relate it all, but for YEARS doctors or other health professionals would tell me that they could fix me for XX amount of dollars or with x type of treatment. Just last year I was bounced back and forth between docs who said I needed surgery ASAP or I would die, and docs who said, " no, I don't think that surgery will help."  Literally back and forth all year...complete with stories of other people who had died from my "condition." Turned out that I didn't need that surgery, and it would have made me worse. Thankfully I had already learned to question and get second opinions otherwise I would have been shuffled into surgery after the first doctor. Consequently...on most days, I AM JADED, and on other days I just have a really healthy skepticism.

For me "bad" (whatever the definition of that would be) T has much greater implications because we're talking about my girl's mind which is already OFF. I'm sure a good T could/would be really helpful, but I'm very cautious. And that's where the cloud of mystery comes into it for me. No T that I have talked to has said what they actually do--I think because they are mostly "talk therapy" sorts. And I guess I feel like I have spent the last 18 years "teasing apart my kids' thoughts and feelings while making every effort to not overreact on an emotional level." I'm not afraid to admit that I have blind spots and areas that I may not see clearly. One of those is obviously a clarity I lack on eating disorders and how my d's affects her. We are processing through that, but I certainly can see how a T could be helpful as an ED expert to counsel me through this.

Sorry...one more educational example. My d has always struggled with math--definitely one of those areas that I have been "teasing apart" her thoughts and feelings for years! It has been a real challenge. Early during refeeding an opportunity for a tutor came up, and I jumped on it if for no other reason than I was having to force her to eat 6 times a day--I didn't also want to force her to do math. I LOVE the way the tutor approaches the sessions with us. She has me sit right there because she both wants my perspective on concepts my d doesn't understand and she wants me there to interpret things that she (the tutor) may not know how to communicate clearly to my d in terms my d understands. My d and I have a common language if you will made up of all our prior math related experiences. So on occasion I have to "translate" for the tutor as well. She also wants me to be a part of what she tells my d so that I can be on the same page the whole rest of the week. It works beautifully. I think of her as an awesome math consultant. And, I think that is more of what I would like in a T. Maybe that's what a good working relationship with a (good) T is like, but frankly I just don't have it in me to overcome all of the interim steps in between--the first question "Do you have experience with ED's" usually reveals a big roadblock right off the bat.

I couldn't agree more with this, "It can be very complicated - this is why clinicians go to school for a long time - but it's not shrouded in mystery. Some people who never formally studied medicine or psychology are really naturally very good diagnosticians, communicators, and therapists. Some people who HAVE formally trained, are really quite bad at these things anyway. And still, the universe of what we do not "know" - have formal and systematic descriptions of - is infinitely larger than is the universe of what we DO know." I think I have just run into some of the bad ones, and I am having trouble being hopeful about finding a good one. In the mean time, I'm all she's got!

Thanks again to everyone for sharing your thoughts. I am still processing through all of this, and agreement or disagreement I REALLY appreciate everyone's insights and experience and the thoughtful sharing of such is a powerful force.

Gotta run! Thanks again.


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AUSSIEedfamily

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Reply with quote  #88 
Dear gracekl,

Yours is one of the experiences that I believe tells the situation of when poor or worse "bad" therapy is the only choice, how does a parent carer then help their child?

Then the question is, to what level/capacity can a parent/carer pick up the missing part?

Then the other question is, when there is good/excellent therapy to what level/capacity can the parent/carer cover ""those out of hours" times when the child is experiencing a period of anxiety/stress/etc can the parent/carer do the soothing/calming stuff until the professional good excellent clinicians are available?

Then here is the REALY BIG QUESTION!!!! How do we get the GOOD/EXCELLENT therapy into the professional clinical training? How do we get the ""professional clinical training establishment to recognise that the ""parent/carer end user experience"" should be included in the professional clinical training???



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Reply with quote  #89 
"No T that I have talked to has said what they actually do--I think because they are mostly "talk therapy" sorts."

Sounds to me, then, like you haven't yet found a good T. A good therapist can explain their approach and procedure and how they will know when therapy can be discontinued. 

Sounds to me like your radar is on and working properly! And, as we know here, bad therapy is more harmful than no therapy.

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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)
kas_US

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Reply with quote  #90 

I received the first book of Dr. Lask's that I ordered. Can I please just say that it is abundantly clear to me that it is an absolute MIRACLE that any of our brains can ever do anything!

I also got "The Woman Who Changed Her Brain." Wow...compelling and hopeful! It's just a matter of not giving up.


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Reply with quote  #91 
Hey - I'm guessing Bryan won't like my thoughts all so much, so I apologize in advance.  I spent nearly 10 years treating patients in a model that revolved around talk therapy with good therapist, developing a rapport and helping patients with the psychological issues they were facing.  I do think it helped some.  But FBT/ASFT/'any treatment that empowers parents and capitalizes on their strengths' have all been SO much more effective from my clinical vantage point.  And they are all therapies - they deal with psychological issues - they don't just put food and a family in a room and leave them alone for 6 months.  I'm not the therapist, ever, on the team - so I think I am a bit more objective at times - I really just want the kids to get better, and don't have a huge investment in how that is accomplished.  But I do have to be clear that as a researcher and a clinician, the science behind FBT is definitely superior to the science behind anything else out there for kids and adolescents.  As Laura says, that does not mean its perfect or that it works for everyone.  But when we speak of anecdotal evidence that hasn't been published or tested in trials, we have to take that with a grain of salt.  For instance, our treatment recovery rates at CHOP in a family based systems-oriented model are quite high right now. That's great, of course - however, we have not been running a research trial and comparing what we do to what someone else does in a really rigorous systematic way.  So, honestly, until we do this level of testing, I have to take our own results with a huge grain of salt, as does ANY clinician or researcher who is claiming better recovery rates than FBT.  And these are treatments I believe in at my own institution - I really still can't go around just stating that we do it 'right' or 'more right' than anyone else; I just can't support that statement.  I can tell parents and patients what we do, and why we've chosen to do it, and then what others do, and then let them decide.  Informed consent. 

A huge piece that is missed when we speak of the 'results' being poor in FBT involves how recovery is defined in studies.  Many previous ED research used metrics for recovery that are only equivalent to what Lock & LeGrange call 'partial' recovery (see Morgan-Russell, Pike, etc).  They had absurdly low weight recovery 'bars' to be placed in the highest recovery category - patients needed only to be within 10-15% of a healthy weight, or achieve a BMI of 18, have menses if they were a post-menarchal female, or be 'improved' in their behaviors.  [Editorial note - I believe this is a pathetically low bar when it comes to kids and adolescents - so I really don't know how to interpret the recovery studies done before 2006-2008]  So, comparing the FBT literature, where 'full recovery' was defined as a percentage of median body weight of 95% or higher, and EDE scores within one standard deviation of the non-ED population normal mean (in a normal range), and normal pubertal function - is like comparing apples to oranges.  A HUGE percentage of people who in previous studies would have been considered recovered, would only have met partial recovery criteria in the FBT literature.  Or, on the flip side, a huge percentage of the 'partial recovery' group in the FBT literature would actually be considered in full remission when compared to older studies.  Or even some newer ones. 

What does this mean?  Well, it means we have to demand that researchers do NOT accept a bar of 'less ill/sick' and lump it into 'full recovery' groups when they publish their data, because it is misleading, and makes promising treatments like FBT/CBT look less promising.  Only 15% of patients do not respond at all to FBT.  40-60% (depending on the study) are fully recovered at 12 months, and it seems to be protective against relapse.  The rest are in this partially recovered category; so they have improved, but they need more.  We all agree this is the category of patients who deserve the most focus for future work.  And I do not doubt they would benefit from meeting individually with Dr. Lask or Dr. Bryant-Waugh, two exceptional clinicians.  However, that doesn't mean that they would benefit from meeting with an average therapist, or even a good one who doesn't know about eating disorders, or the latest work.  They can do more harm than good.  I think we need more studies, with high bars, and the most intense scrutiny.  I want FBT to be scrutinized too.  BUT - Laura is right - it really does perform better than anything else at this time.  AND - there is no actual evidence base that proves that dealing with 'psychological issues' in individual therapy while also working with parents is more helpful than FBT alone at this time; that doesn't mean that it isn't the right thing to do for a subset of patients - but I think it is safe to say that it does mean it isn't the right thing to do for some patients. 

I love the work Bryan is doing with the brain, and can't wait to see how it evolves and informs the treatment literature in the future.   So none of this is meant to disparage that.  But we have to compare apples to apples if we want to make sense of this stuff.  And there aren't a lot of other apples to compare the FBT apple to at this time.  Hope that all makes sense - sorry for the rant/soapbox/whatever you call this.  [smile] - Rebecka Peebles
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Reply with quote  #92 
Speaking as someone whose FBT apple went bad pretty early on in the process I'm biassed on this one. I agree absolutely that evidence based treatments should be made available to all and from the rest of the thread and indeed the rest of the forum it is obvious that this is far from being the case. However I would put in a plea for the continuation of work with both those who don't make a full recovery and the 15% non-responders AND further study of those for whom FBT with no adjuncts is successful so that we can work towards a world of recovery for, not just a proportion
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Reply with quote  #93 
Dr P
Would live to know your thoughts on prof Lask statement that fbt works in 50% of those with mild anorexia of recent onset. This statement still bothers me if it has the potential to deter clinicians from recommending fbt for sufferers they see as moderate to severe. Our ds psychiatrist, who was speaking at the workshop prof Lask was speking at and which I attended as a parent, challenged this as not being the case in his experience. And used our d as an example - while bmi was not 'very low', her cognitions were severly compromised with extreme exercise compulsion, almost catatonic with anxiety and utterly unable to choose to eat; 10kg weightloss in 3 months; ended up in olanzipine to try and dampen some of 'voice'. We had another thread debating what 'mild' was.
Our psychiatrist was very clear that in seeing many children through the RCH Melbourne fbt program, he still could not predict which families and childrens this would work with and that severity of illness was not one of his hunches as to where it is not going to work. Hope this makes sense!

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Reply with quote  #94 
Dear Doctor Peebles,

Please feel free to rant & soapbox as much as you wish as I feel that's what is so fantastic about this forum as it allows interaction between Parents/Carers & medical/clinical professionals such as your self, Bryan Lask & others on the issues surrounding what works & when & what has different levels of success!

Unfortunately a heck of a lot of medical/clinical professionals are poorly trained in this area & have so much self belief that they are the answer & parents/carers just need to follow along with their advice & instructions despite the fact that the ED person gets worse.

I know that to be the case with my own D & her experience in 6 hospitalisations over  6 years

Best thoughts & wishes to you!!


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Reply with quote  #95 
Hey - good point Marcella - I did NOT mean to exclude other responders/nonresponders from the need for more and better treatment research - we absolutely need that for everyone.  I was just mentally more focused on partial responders because of the way the discussion thread had been leaning toward "Is FBT enough?  Or do you need FBT plus x, y, z?"  My apologies, and thanks for pointing that out.

GTBT - This is one of the biggest myths about FBT that keeps getting perpetuated; I am not entirely sure of where it comes from although I can take a guess and will here.  I referred many of my patients to the treatment trials for FBT at Stanford, both the earliest ones, when I was much more skeptical, the RCT published in 2010, and the yet-unpublished multicenter trial (so I don't know the results of more than a brief scientific presentation this fall).  The inclusion criteria were "participants were eligible if they were between the ages of 12 and 18 years, living with their parents, or legal guardians, and met the DSM-IV criteria for AN excluding the amenorrhea criterion"  That's  it.  There were no exclusion criteria other than parents needed to be able to speak good enough english to participate in treatment without an interpreter, although I think even that expanded over the 3 waves of trials but may be wrong.  So I often referred patients who had been sick for years, and had tried everything else.  Of course I referred new-onset kids too.  But also single-parent families, low-income/no-insurance families, families with long genetic histories of eating disorders, parents with active issues themselves, etc.  Many, actually most, of these families elected to participate; there is always a selection bias in studies and you could argue that the people who decide to commit to a 12 month study have more wherewithall than those who don't.

They've done analyses of all of these data, which included some of my 'toughest' and 'more chronic' patients, and they didn't find any correlation between length of disease or severity of illness and outcome.  So the myth does not come from this.  I believe the myth comes from the fact that the average duration of disease was 10-12 months; however there was a wide standard deviation, and the average age was 14, so that is a lifetime for the parents of a 12-18 year old.  41-48% had been previously hospitalized, and they were averaged the 5-7th percentile BMI for age.  I think the myth also comes from the fact that 20-32% were diagnosed with comorbid disorders, but I know they were very judicious with only applying a comorbid diagnosis (depression, anxiety, ocd, etc) to a patient if they had this condition before their eating disorder was diagnosed, and if the symptoms did not solely revolve around food/weight/shape/exercise/etc.  So, this really is a myth.  Many patients with severe or chronic AN, lacked resources, and whose parents had their own demons (who doesn't?), did quite well in this treatment. 

Anecdotally, I have also found this to be true.  I truly cannot predict who will do well in FBT and who won't on first glance, or even after working with them in a hospital setting intensively for weeks.  I am frequently surprised.  And many patients have serious illness and do excellently.  On the flip side, I definitely have patients who I think will do great and then don't, as well.  So it is humbling and we need to know more.  But I think we need to make sure we have accurate information as we learn more - it isn't evangelism to look at FBT and see its strengths, and then also suggest we need to keep going.  And we don't need to disparage it to justify continuing this work.  The work coming out of Australia, and England (including Dr. Lask's), and the US, and elsewhere - it's all critically important, and we're lucky to have such committed, intelligent, and passionate people doing it, and families that continue to want to advance the science as well.  This is really how we will move forward, I think. Take care - RP
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Reply with quote  #96 
Dr. P,

Thank you for that explanation in support of FBT. We are a result of FBT being very effective and enough to take care of our daughter's Anorexia in respect to her eating and body dysmorphia. It took about 18 months but after that time she was eating very well though she still needed support which was age appropriate for her. I am a believer in FBT because it saved our daughter's life. 

I think what a lot of us are finding is that these ED behaviors tend to morph into other issues that came with the ED or that the ED exacerbated. For my d that meant paralyzing social anxiety, obsessiveness about her face/teeth/nose/skin, noise hypersensitivity, PTSD, concentration loss, wild mood swings, explosive anger, depression, anxiety, etc. These were all symptoms that she didn't have before or if she had some of them, they were under the radar or manageable. At that point we realized that FBT was not enough to get her completely well and she had CBT.

I have wondered if she would have had an adjunct therapy to FBT, such as EXRP or CBT while we were doing FBT if life would have been less painful for all of us and if she would have not had the mutated ED like behaviors that came when the Anorexia left. It is for these reasons that I am intrigued by what Lask and others are saying about adjunct therapies. 

I am also curious when we talk about recovery rates, if any of these other behaviors that substitute the ED are taken into consideration or if the measurable markers have to do strictly with physical measures (weight, menstruation, body temp, etc) and lack of restriction and body image? 



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Our 20 year old daughter has been working out her recovery from Restrictive Anorexia Nervosa and compulsive exercise for the last 10 years. She was DX at 9, re fed at home with support from local FBT and ATDT forum, and weight restored at 11.
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Reply with quote  #97 
A reply from Prof Lask

 please forward to the forum

"I am also curious when we talk about recovery rates, if any of these other behaviors that substitute the ED are taken into consideration or if the measurable markers have to do strictly with physical measures (weight, menstruation, body temp, etc) and lack of restriction and body image?" 

Great point Maria EC! 
 
Although about 50% of teenagers  with AN are deemed to have done well with FBT, the same figure by the way for any of the treatments that involve parental empowerment, the outcome studies focus primarily on weight, and occasionally on eating disorder attitudes and behaviour, but not on the underlying intrinsic factors of AN. You are right that far too often AN morphs into the disorders you mention. 
 
This is hardly surprising given that AN is a brain-based disorder, independent of starvation, which of course exacerbates the brain problems.  The many and very varied features of AN are primarily due to the brain disorder, not to starvation. Thus re-feeding is a first step but MUST be accompanied by treatment for the person. Except in the milder cases it won't remedy the underlying anxiety, agitation, obsessionally, shame, self-disgust, excessive preoccupation with body-shape and size, mood disturbance, involuntary movement, confusion and occasional self-harm. These are all intrinsic to this wretched illness. 
 
Yes - some will genuinely recover with re-feeding i.e. usually younger ones, with short length of illness and who have not lost much weight. Others gain weight, but because the intrinsic features have not been tackled, they are far more likely to relapse or morph into a number of the other conditions you noted. 
 
So, I support you all in insisting in getting into programmes that support, advise and counsel parents, be that FBT or any other parent-focused programme.
 
But PLEASE insist on individual help too for your daughter. Don't be dissuaded by the false premise that 'all that is needed is refeeding'. If that were the case I would have been out of work many years, even decades, ago. And I am sure many of my detractors would say 'Amen' to that! 
 
This is not a counsel of despair, but one of hope. Many of your daughters are struggling because they are not getting comprehensive treatment - i.e. parental empowerment PLUS individual therapy. The two go hand in hand. Insist!
 
Best wishes to you all
Bryan Lask

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Reply with quote  #98 
Oh, boy. Fascinating exchange. I'm sure it is both enlightening and frightening to see professionals and advocates get into the nitty gritty here, but I am also aware that this kind of discussion has real-world consequences.

The advice to "insist" on individual therapy and that only a minority of patients can recover with FBT alone is provocative, and will set many families here at odds with their current clinical team. If so, the evidence is, I believe, on the side of that clinical team. Individual therapy is by design not part of FBT for good reasons. The kind of individual therapy Dr. Lask recommends is not available to almost anyone and is as yet untested against or apart from it. 

Dr. Lask has a compelling theory on the cause of eating disorders. I personally find it plausible and it deserves to be tested and I would like to see it widely discussed in the field and some consensus occur. This also goes for therapies to treat those brain problems, if treatable: but as yet that has not happened with the scale and rigor of that done around CBT and FBT in eating disorders. I look forward to that.

As with all such discussions: parents need to do their homework and come to their own conclusions.

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10Cups

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Reply with quote  #99 
No meal I have ever given any of my children is "just food," and that applies a hundredfold to the meals I've given my son since he got sick.

If it were "just food" that helped people get better, we could give them a fortified vitamin slurry through a tube, or put them on a 24/7 IV drip. But re-feeding is its own kind of therapy.

  • It exposes our kids to what they fear.
  • It requires our kids to overcome anxiety by developing coping strategies.
  • It teaches our kids that we love them and will nourish them unconditionally.
  • It helps our kids love meals again as a social event.

There is no such thing as "just food." 

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Mom of 11-year-old son who started showing signs of RAN in May 2013. Currently restoring weight alongside therapy for ED and pre-existing OCD.
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Reply with quote  #100 
10Cups--Amen!
Amoma--"using behaviorist methods to deal with life's anxieties"--this is often done in individual therapy. In fact, many cannot apply these kids of methods without the support and accountability provided by individual cognitive-behavioral therapy (though there was a study done that trained parents in doing CBT with their children ...). I don't mean to say you don't know this, because you are such a savvy momma ((HUGS)), but that I think often "individual therapy" can be misconstrued as some kind of psychodynamic or other unhelpful talk therapy, when behavioral therapies are also usually delivered in individual therapy sessions.

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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)
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