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toothfairy

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Reply with quote  #1 
Hi all,
This came up in my normal search to get on this site today
, I just typed in "aroundthedinnertable" & it was on the list with the other😬 MPA ones.



https://kiwifarms.net/threads/around-the-dinner-table-atdt-forums.29083/

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
Foodsupport_AUS

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Reply with quote  #2 
Oh well. Having seen what Kiwifarms is I am not surprised that we have rated a mention there. The whole site seems to be devoted to trolling and ridiculing things that they don't seem to understand. 
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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
meadow

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Reply with quote  #3 
Makes me really sad. This site has without doubt been the single most helpful thing for us as a family.
mjkz

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Reply with quote  #4 
I was over on kiwifarms and then the proana website.  It was gratifying to see for just about person who raked us over the coals for being overcontrolling, etc. there was another saying gee, I wish my parents had cared enough to do something.  There were quite a few who recognized that we as parents and loved ones who were supporting someone with an ED needed a place to vent and get support too.  It was also very interesting to see that the posts that we often thought were trolls or sufferers posting over here-it was and the mods caught them at it.  I had to laugh at how often we were talked about over on the proana web site.
toothfairy

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Reply with quote  #5 
For Sure!!!!


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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
iHateED

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Reply with quote  #6 
It is so scary what you can find on the internet.  You can clearly see that those posters are still suffering severely with their ED's and it breaks my heart for them.  I know my D had the same feelings about FBT when we first started down the path several years ago, but now she knows it saved her life!

berry75

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Reply with quote  #7 
Ok just looked at the site,I can see why the comments were made.There is no way any research was undertaken before bagging this site.I personally would not have gotten through the last year without the advice from this forum.I did do research hours and hours days and months of research into the best most effective treatments.Under the advice of doctors we started this process.I am not a doctor or an expert and I never claimed to be.I just want my daughter back
aboncosk

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Reply with quote  #8 
Wow!  Had no idea this type of "hate" is out there.  Our family has gone the traditional medical/treatment approach - it didn't work.  They excluded us as parents and who better to know the child than the parents? And who is the person that will be in the home caring for the child (if not in residential/inpatient care) than the parents. 

These sites anger me.  They are entitled to their opinions just as we are entitled to ours.  I can attest to Maudsley working for our daughter.  It's only been seven weeks of using this approach but she's achieved 1/3 of her weight gain to her restoration weight.  All the PHP/IOP treatment facility did was exclude us and cause anxiety over foods that they fed her and from there it was months of losing a pound here and a pound there.  Coming from the week long Intensive Family Treatment program at UCSD - we are doing this under the advise of medical professionals and those who support and back research for eating disorders. 

What's that saying - haters gonna hate...we can't change that but we can continue to support one another and help our children beat this insidious illness.  Rant over.

iwanttohelp

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Reply with quote  #9 
Hello (i wanted to start a new post where i introduced myself, but i was told from the system i have no permission for that).

So i am a learning psychologist from Europe, Germany and want to specialize in ED treatment. I volunteered already in 3 clinics here in G. The approach is VERY different to what i find here and its for me interesting to read from the view of a parent/caregiver. Here its very usual to put sufferes in treatment for several months, actually i have never heard of a family doing FBT or magic plate at home. Personal i am not sure what to think of this way bc its so different from what i see and learn about this illness.

So i did a bit of research into a group of recovered and semi recovered sufferers from one clinic (they all are young adults now and their treatment lies at least 1 year back), asking them if they could imagine their parents having done this approach and if they would have found it helpful or not. The answers were pretty much the same like on this pro ana site: nearly every girl (most of them were girls/women) said that they would have found it more harmful than helpful and a big problem for the further relationship with their parents.

Also, most of them critized the way of considering their ED as only a nutritional problem. They mentioned severe causes and reasons for their Ed, what no food in the world would have been able to fix. But they also agreed that being at a healthy weight and not malnourished is the base to start working on their problems.

Maybe this can be helpful?


Please be kind with my language problems....:-)
Foodsupport_AUS

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Reply with quote  #10 
Iwanttohelp this is a forum primarily for caregivers. Although professionals are able to read they may not start a thread. 

Your information is not new, however perhaps in your professional reading you may choose to read about FBT further and look at the numerous papers which have been produced showing that this method works. No one with an eating disorder likes being treated by FBT however it is associated with the good results, fuller recovery and faster, hence its adoption as the primary treatment in most of the English speaking world. Long inpatient admissions have not in studies been shown to be particularly helpful, nor has psychotherapy. 

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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
Kali

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Reply with quote  #11 
Hi iwanttohelp,

Welcome!

Quote:
said that they would have found it more harmful than helpful and a big problem for the further relationship with their parents.


Yes this would probably be the response of someone with an ED who doesn't want to eat! However as parents most of us have found that we are able to help our children and that without food and nourishment and maintaining an adequate weight AND therapy and or medication as needed, that recovery is not possible. Certainly the sufferer has feelings and can benefit from therapy but Ed is a biological brain illness and not the result of bad parenting or trauma or underlying problems and restoring the brain as best as possible by eating enough is the first line of defense against anorexia.

Read around the site and especially read the stories of parents who have helped their children reach full recovery and you will see that many of them have something in common: they never gave up on their child and they made sure their child received appropriate treatment and food and was weight restored. And the patients you spoke with also seem to realize that being at a healthy weight is the start of recovery.

Quote:
But they also agreed that being at a healthy weight and not malnourished is the base to start working on their problems.



best wishes

Kali

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toothfairy

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Reply with quote  #12 
Hi iwanttohelp,
The approach that a lot of us are using here,is the only evidence based treatment with a very high success rate.

If you did the same research into our kids, I have a feeling that you would get the same ( type of ) response.

My guess is our kids ( that have recovered), would be of the opinion that they would not have recovered or be in remission without their parent/carers support.
This illness takes a very long time to treat, normally, from what I have read, at least 3 years.

I know from personal experience that my Child would not be where he is now, if it wasn't for this approach.

Being realistic, my Child was starving himself & purging up to 8 times a day when he ate. He was hospitalised for 4 months age 13.
When he was discharged, I took over & ran my home like an inpatient unit. My kid was still purging when he left hospital, & did not engage with the therapy there, he did not trust the family therapist ( she blamed us), and my kid could not bear to listen to her rubbish.

It was us at home that got him to the stage he is at now. He is doing well.We are 1.5 years into treatment.

In patient treatment was just a kick start to stabilize him.
At home, I still had to sit with him to eat for hours on end, he just wasn't able to do it alone.

Being realistic, he could never have stopped his severe purging alone either, it needed 24 hour intervention from the person that loves him most. I know my Son would agree ( in his rational mind).

Now, My kid actively engages in therapy with an fbt psychologist. She is utterly, totally & completely using the same plan & strategies as us, to get our kid to good remission together as a team.

Most people here use a professional team, this is not just a bunch of random parents making up treatment plans.

A lot of us like to keep up to date with the latest science of ED'S, neurobiology & treatments of Eating Disorders.
Best of luck,
Toothfairy

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
Torie

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Reply with quote  #13 
Quote:
Originally Posted by iwanttohelp
So i did a bit of research into a group of recovered and semi recovered sufferers from one clinic (they all are young adults now and their treatment lies at least 1 year back)


Hi iwanttohelp,  I'm interested to know more about your research project.  Can you please tell us more?  For example, is the relapse rate there similar to what we see with FBT?  

I'm also interested to learn how it is decided that a sufferer will receive treatment - for example, do they need to get down to a certain BMI to qualify?

Thanks for dropping in.  xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
iwanttohelp

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Reply with quote  #14 
Good morning and thanks for your responses.

I am not totally new to the subject of FBT ;-) bc if you want to come to a reasonable conclusion of sth you have to inform yourself about it!

I know that FBT has good succes rates esp in young patients who live at home or will return home after an inpatient stay.
Its not true, that psychotherapy does not help! As i am going to be a therapist soon my own, i want to make this point very clear!
What is true: a very malnourished brain does not work properly, therefore it is needed to restore weight before therapy may work best.
Esp CBT has been evaluated and there are enough studies who show their efficience.

In Germany their are National Treatment Guidelines for ED, and there are two recommandation to all clinicans and other professionals:
1. evidence based psychotherapy
2. normalizing of eating and weight

In Germany there are 3 therapy options which insurances will pay for: CBT, PA and depth analysis.
FBT is very uncommon, even if there are good studies prooving the effect.

Different to the English speaking countries we have several very qualified treatment centers which are paied by the insurances as they belong to the health system. Sufferers dont have to be at a certain BMI, but below 15 it is advised. Goal BMI is mostly a BMI of 18 or higher. The whole system is based on semi voluntary: patients get a meal plan and supervised meals, but normally they also have the freedom to leave the clinic in their free time and enjoy themselves. If a sufferer does not gain enough, he will either be tube fed or discharged or transferred to a psychiatric ward. Different as in other countries it is not very common to put patients inpatient against their will by law. This may be heritage of the last century, i guess.


The group i did my research with were about 50 patients. 18 of them were in solid remission. 7 were relapsing and already waiting for a new hospital stay. 11 were wr but struggling and the rest was something in between.

There has also been a very large study in Germany (ANTOP) which showed good results with psychotherapy:

http://thelancet.com/journals/lancet/article/PIIS0140-6736(13)61746-8/abstract


I am not aganst FBT and i am impressed from what i read here in the forum. Esp the conditional love is heart warming and i deeply respect the efford every single parent here takes to help his or her child. Its just that i started to wonder why treatment guidelines and science seems to be so different over the countries. I read some papers which seem to proove the evidence of FBT and i think its sad that we dont have more clinicals here trying this!

The rate of relapses is not small, tho. A lot of sufferers need more than one stay.
toothfairy

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Reply with quote  #15 
Hi iwanttohelp,

Thanks for your reply, it is very interesting.
I also think it is wonderful that you are doing this research and that you are so open minded.

Here is my experience.

 My Son is doing great, and FBT works for us. He also does CBT with a psychologist (ED TRAINED). He has engaged well, and it really has worked well for us too.
Another thing is that my Son, ( and this is a very common theme here), was given a goal and target bmi of 18 by his ED SPECIALIST Dietitian.

My Son was only barely functioning at this bmi, the thoughts still fully controlled him and he still looked for every opportunity to restrict, and felt very fat etc..

I took the " meal plan" into my own hands and now have him up  to a bmi of 21/22 , he is doing so much better, a lot more of his compulsions have just stopped in a matter of weeks and he feels better and more comfortable with himself, and the dysmorphia is lessening the higher his bmi goes.
This is how a lot of people have experienced getting the sufferer to a higher bmi here.

Here is a you tube video with Prof Janet Treasure.

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
iwanttohelp

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Reply with quote  #16 
Hi toothfairy, thanks for your reply.

I already know this video and the blog from Prof. Treasure. Her books were one of the very first i studied about ED!

Therefor i also asked the partipiants of my research if they felt a significant difference, when they reached a certain weight. Like: was there anything better/changing, when you reached BMI 18 or BMI 20?
The answers tho differed a lot. I remember one girl saying, she even wished it would be that simple: just getting at a higher weight and all the OCD and mood changes would get better. This girl was at a healthy weight for over 2 years, but the BMi changed during that time. So she experienced herself at a BMI of 23 and 20 and she said that the OCd and mood and depression wasnt effected or even in a bad way bc her mood dropped a lot with a higher BMI.

I know, you will probably say that she was not long enough at this weight ( i dont know how long and she does not either exactly). But i doubt this.

I discussed the idea, that fat and more weight gain will help, if a patient is at a bad state at BMI 18, with one of my profs, who is also the medical leader of one of these treatment centers. He told me, that ED are as long about food as somebody is undernourished (more important than being underweight) but that you cant feed the soul of the sufferers to healing. He said, the base is nutrition but its not the key to remission, but psychotherapy and helping the sufferers with their emotions, wishes, fears and so on, is.

Greets!
toothfairy

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Reply with quote  #17 
Hi,
Yes I am thinking she was possibly not at that weight long enough.That is just my personal opinion.

In my situation,My Son has been in treatment for 1.5 years. He has never missed a meal at home since over a year and a half. 3 meals and 2 snacks.
I am going to aim now  for a higher bmi, as 21/22 is still not high enough for my Son.
I do not want him to be left part recovered, his rigidness is loosening by the day the higher his weight gets, it is just amazing to watch.
So what I am saying is that he was doing well, for a year at bmi 18, but now he is doing REALLY well.

We are also chasing growth. My Son was not a small child, he was average, so he needs to be brought to a better than close to minimum bmi.

Lots of leading clinicians look at the historic growth curve up to 2 years prior to onset of illness, and bring the person back to that plus more.

Yes, I agree that therapy is a crucial part, for us anyway, but therapy does not work in my experience until the person is at at least a minimum healthy bmi , and the person is starting to be somewhat rational.

My Son really likes his psychologist, and he really respects what she say's and she has helped so much with his black and white thinking etc.

I feel that there are many reasons people get anorexia. It just depends on the situation and personal circumstances.
I do not agree that this illness is always trauma related.

For example I have come across the following - Which are simply negative energy balance that triggered anorexia...
Child with new braces on teeth triggers anorexia.
Child goes on school sponsored fast for charity triggers anorexia .
Person goes on simple diet triggers anorexia.
Person becomes vegetarian triggers anorexia.
Sporty Person does not eat enough - triggers anorexia.

Anorexia is a brain based biological illness, that some people are pre-disposed too, and can be triggered by many , many things.
This is just how I see it.
Best wishes, and keep up the good work!
TF

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
Torie

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Reply with quote  #18 
Thank you for the information.  It's really interesting to hear about treatment in Germany as we don't often hear from people who live there.  (BTW, my mom is German.).  I will intersperse my comments below:

Quote:
Originally Posted by iwanttohelp
Its not true, that psychotherapy does not help! As i am going to be a therapist soon my own, i want to make this point very clear!  What is true: a very malnourished brain does not work properly, therefore it is needed to restore weight before therapy may work best.


I think everyone here would agree with that or at least something very similar.

Quote:
Originally Posted by iwanttohelp
Esp CBT has been evaluated and there are enough studies who show their efficience.


CBT has been popular here on the forum, but my impression is that many here have been even more pleased with DBT.

Quote:
Originally Posted by iwanttohelp
In Germany ... Goal BMI is mostly a BMI of 18 or higher. 


Many here have found that their Ed-kid was still very ill at a BMI of 18.  Actually, my own d never got below a BMI of 18 at all.  And yet, she was very ill and (so lucky!) was diagnosed with AN by a physician at CHOP (Childrens Hospital of Philadelphia), one of the top-rated children's hospitals in the USA. 

Quote:
Originally Posted by iwanttohelp
The group i did my research with were about 50 patients. 18 of them were in solid remission. 7 were relapsing and already waiting for a new hospital stay. 11 were wr but struggling and the rest was something in between.


Wow! It must have been fascinating to speak with them!

Quote:
Originally Posted by iwanttohelp
There has also been a very large study in Germany (ANTOP) which showed good results with psychotherapy:

http://thelancet.com/journals/lancet/article/PIIS0140-6736(13)61746-8/abstract


THanks.  I will have a look.

Quote:
Originally Posted by iwanttohelp
i started to wonder why treatment guidelines and science seems to be so different over the countries. 


As you may know, the treatment guidelines in the US changed a few years ago (DSSM or something like that.) I suppose this is normal and they will change again as the science of EDs advances.

I often think how lucky we are to be living in the current century, as my d would not have qualified for treatment under the old guidelines.  We were able to get her weight restored at home, relatively quickly, as she received such a prompt diagnosis.  I shudder to think what would have happened had we waited until her BMI was down to 15.

Quote:
Originally Posted by iwanttohelp
The rate of relapses is not small, tho. A lot of sufferers need more than one stay.


I think all of us live in fear of relapse.  Well, maybe that's too strong, but yes, the relapse rate is sobering.  I think it is improving, though, with modern treatment.

THank you again for taking the time to converse with us.  Your English is great!  (So much (!) better than my German!) xx

-Torie

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Kali

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Reply with quote  #19 
Hi iwanttohelp

I think this is a really interesting discussion and that you will become an excellent therapist because you are curious and open to learning and as your name says, you want to help.

IMHO I always wonder why in some countries sufferers need to be at a very low bmi...15..13...etc. before they are admitted to residential/inpatient treatment. A person can be very ill at a bmi of 17... or 18......and research has shown that the sooner they get help, the better the outcome. One analogy is to compare it to cancer; why would someone start treating cancer at stage 4 instead of stage 1? My d. for example went to residential treatment at a bmi of 17 and was still very very ill when she reached a bmi of 18. So sometimes I wonder why treatment centers want to refeed someone to a bmi of 18 and why they think that is ok? The treatment center our d. was in went higher, she was released after maintaining a bmi of 20.5 for 6 weeks which research has also shown to be associated with better outcomes. When she came home we followed many of the fbt principles and had very structured mealtimes, supervision, etc. I did find that when d. was critically ill and at the bmi of 17 that therapy did not really help until she was restored to a higher weight. At a low bmi we were only engaging with the eating disorder in therapy and she really had limited insight into her situation. When she reached a higher bmi she was better able to understand what had happened to her. I'm not saying that the person should not be in therapy but just what I noticed during the process with my d. She has been in therapy continuously since we discovered she had AN.

I also think that a younger child does not engage in therapy the way a young adult might...so there are differences there.

Also, my opinion as a parent is that all the best therapists consider the family as part of the team and try to facilitate open communication and support for the family as well as the patient, so that the family can be well educated in how to best help the sufferer.My understanding is that research has also shown that the best recovery rates are when the sufferer has a supportive family. I hope that you will do that with your patients and their families in your practice. Families can really benefit from being coached about how to refeed their child and how to work out the conflicts in the family brought by the AN (lying, anxiety, etc); that was helpful for me for example. If you can harness the power of the family to really help your patients, you will be helping your patients get well because we are on the front lines with the disorder at home.

Here is a study they did at Columbia U. that I find interesting if you want to take a look: 
https://www.eurekalert.org/pub_releases/2015-10/zmbb-nsr100715.php

Essentially their research showed that when patients with AN make food choices, a different part of their brain is activated compared to people who do not have AN. it is pretty recent, from late 2015. Your professor is right when he says
Quote:
you cannot feed their souls to healing
because it is not about their souls it is about their brains.

Also there is a therapy called DBT here which has been helpful to many sufferers AFTER weight restoration, my d. did that also, as well as CBT. I wonder if you have that in Germany?

best wishes,

Kali

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mjkz

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Reply with quote  #20 
Quote:
I know, you will probably say that she was not long enough at this weight ( i dont know how long and she does not either exactly). But i doubt this.


Things don't magically improve but the longer the person is at a healthy BMI for that person, the more brain healing will happen and things will get better.  For some people like my daughter the thoughts never go away but we have done a lot of work on realizing that emotions are just feelings and they won't kill her whereas starving herself will.  The thoughts haven't lessened but her ability to fight them has grown in strength the longer she is at a healthy weight for her.

Quote:
Its not true, that psychotherapy does not help!


My daughter has been in therapy since diagnosis and refeeding started.  She has comorbid conditions so I felt it was necessary as long as she was also gaining weight.  Does it work as well as if she was a healthy weight?  No, but we have to work with where we are at and keep moving forward.  That doesn't mean she doesn't get anything from it and as she gained weight, her trauma issues got worse.  Her therapist has been amazing at helping her cope with the trauma issues and her own emotional dysregulation as she gained weight.  They focus on DBT and CBT along with EMDR and talk therapy so focus on where we are at now and how to move forward rather than digging in the past for reasons why she is the way she is, etc.

Quote:
Its just that i started to wonder why treatment guidelines and science seems to be so different over the countries.


History, cost, age.  No every family can do FBT and be successful.  My daughter has required numerous hospital stays and gotten to single digit BMI at one point so for us anyway it has been a combination of FBT at home, hospital stays as needed and tube feeding along with therapy in every form she found helpful.
iwanttohelp

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Reply with quote  #21 
Wow thank you so much for your input! I really love this discurs and i am happy for your kindness. Tbh i was a bit fearful to come here bc i am not a parent and i may have a different view on this topic.

We have DBT here! My Alma mater etablished one of the first ward with that therapy in Germany! But over here it is mostly used for BPD and/or PTSD, not Ed. I know a bit of this approach, but not enough to get deeper in it :-(

Its very interesting how treatment options have changed over the last 10 years in Germany. Back in the 90ys/00s the treatment centers would take patients above 16 ore even 18 only. So for the younger sufferers there was only the psychiatric children ward left. Today the leading and most polular clinics have special wards for the younger ones, where the approach is a bit different (more family therapy e.g. and more support from specialised nurses).

Its fascinating to work with them and i loved it! But there are still things i dont agree with, so in Germany the patients will never be blind weighted or only exceptionel. I think this puts an enormous pressure on them to be confronted with the numbers sometimes every day. I read that else where it is very common that the sufferers dont know even their target weight!

Of course its a brain based disease but this counts for other affective disorders like depression or mania or alcohol abusus aswell. You have these biological triggers and the neurological and the environmental triggers.


So, thanks for letting me know all your experiences, i will go on reading here and hopefully learn more about this cruel illness. For you all the best (now i have to go and do my studies about personality disorders bc this will be my next exam!)

toothfairy

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Reply with quote  #22 
Wonderful,
It has been great that you dropped by here, please call by again and let us know how you are getting along.
Good Luck in your studies!
Best wishes
TF

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.
Foodsupport_AUS

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Reply with quote  #23 
Quote:
There has also been a very large study in Germany (ANTOP) which showed good results with psychotherapy:

http://thelancet.com/journals/lancet/article/PIIS0140-6736(13)61746-8/abstract



My reading of this is not seeing good results from psychotherapy. 
There was a small increase in BMI at the end of treatment and over 12 months (average of around 1.5kg/m2). There was no statistical difference between the study groups and there was no control. This supports psychotherapy as probably not making things worse, but as a study it would appear to have limited benefit. The high drop out also makes it difficult to know what is happening. 

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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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