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Baja

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Reply with quote  #1 
I’m desperately looking for FBT support in Germany. Any idea whether TK Techniker Krankenkasse has ever agreed? D is almost 16 has Orthorexia/partial Anorexia. I found Eva Musby’s book week 1 and started very helpful skyping week 2. Now week 4, weigt gain 1.9kg and desperate to continue (3-4kg to go) but doc wants me to back off. Give her a 2-week break. I feel I need to keep going. Any experience?

Thx
tina72

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Reply with quote  #2 
Hi Baja,

ich bin auch aus Deutschland, sprichst Du deutsch oder soll ich Dir lieber auf Englisch antworten? Ich mache einfach beides, dann kannst Du es Dir aussuchen. Normalerweise ist die "Amtssprache" hier Englisch, damit alle mitreden können, aber ich weiß, wie wichtig es ist, auch mal in der Muttersprache reden zu können.

Es ist SUPER, dass Du FBT und uns hier gefunden hast, damit kannst Du Deiner Tochter die beste (wissenschaftlich bewiesen!) Therapie geben, die es derzeit gibt. FBT ist ein Lebensretter, dieses Forum hier auch, meiner Tochter geht es heute prima. Dazu später mehr.

Es gibt derzeit keine aktiven FBT Therapeuten in Deutschland. Frau Dr. Hopf ist in Mutterschaftsurlaub, sie ist derzeit die Einzige, die FBT hier anbietet. Du hast nun drei Möglichkeiten:
1. wenn Du gut Englisch sprichst, kannst Du Skype-Sessions bei Eva Musby machen
2. wenn Du es lieber auf Deutsch willst, kann ich Dir eine Deutsche Therapeutin vermitteln, die in England arbeitet und auch Skype-Sessions anbietet
3. Du kannst es allein machen. Ja, das geht, ich kenne mittlerweile einige Familien, die das hier machen. Man braucht eigentlich nur einen Arzt, der die medizinische Überwachung übernimmt, das Aufpäppeln muss man sowieso allein machen. Mit Eva Musbys Buch in der Hand und dem ATDT Forum hier geht das sehr gut.

Bezahlt wird FBT hier in Deutschland nur extrem selten und dann meist von privaten Kassen, obwohl es in den S3 Richtlinien für Anorexie als beste Therapie für Jugendliche genannt wird. Da es aber hier momentan eh keine Therapeuten gibt, wirst Du Skype-Sessions wahrscheinlich eh nicht bezahlt bekommen. Die braucht man aber höchstens am Anfang und im Notfall. Was Du brauchst ist ZEIT und KRAFT. Das bezahlt Dir aber eh keiner.

Der Arzt, der Dir rät, Dich zurückzuziehen, macht einen großen Fehler damit und Dein Bauchgefühl, dass Du weiter machen solltest, ist GENAU RICHTIG. Es ist am Wichtigsten, das verlorene Gewicht schnell wieder aufzuholen und dass sie lernen, wieder alles zu essen. Dann haben sie die besten Genesungschancen.

Meine Tochter war 17, als sie krank wurde. Sie war 3 Monate hier in Deutschland in der Klinik und es hat gar nichts gebracht. Ich habe dann ein völlig verstörtes Kind nach Hause geholt und FBT angefangen. Das ist jetzt 18 Monate her. Meine Tochter ist heute eine glückliche junge Frau, sie geht seit diese Woche an die Uni. Letztes Jahr haben sie uns in der Klinik gesagt, sie würde nie mehr gesund und müsste wahrscheinlich in einer psychiatrischen Wohngruppe leben...
Die AN ist noch nicht ganz weg, aber zu 90% und am Rest arbeiten wir noch. Es dauert lange, bis das Gehirn heilt, aber mit jedem kg und jedem Monat kam sie ein Stückchen zurück, und heute ist sie wieder ganz "die Alte".

Bitte frag alles, was Du wissen willst, hier sind ne Menge toller Eltern, die genau wissen, wovon Du sprichst und die das alles selbst durchgemacht haben. Und wenn Du auf deutsch schreiben möchtest, kannst Du mir gerne auch eine Privatnachricht schicken. Clicke dazu auf meinen Namen und es öffnet sich ein Fenster unter "send an email to".


Hi Baja,

for the case that you don´t speak German here is my answer in a short form in English:
A very warm welcome from Germany, I am glad that you found FBT and us here on ATDT. This therapy will safe your d´s life.

At the moment there is no FBT therapist available in Germany. Mrs. Hopf is in maternity leave. She is the only one. You have now 3 possibilities:
1. You can do skype-sessions with Eva Musby
2. I can give you the adress of a german therapist who lives in England and she is doing skype-sessions in German
3. you can do it on your own. That is possible, a lot of parents do that. You need a doctor for medical stuff, Eva Musbys book and this forum here. And good nerves. You need to do the refeeding yourself anyway. No therapist will plate her a meal and help her to eat it.

The insurances do not pay for it normally here although FBT is mentioned in S3 Richtlinien for AN. As there is no therapist at the moment here they will not pay for skype-sessions, too. But you will not need many of them, only for the start and for difficult problems. Most questions will be answered in Evas book or here.

The doc that tells you to back off is COMPLETELY WRONG and you gut feeling to continue is CORRECT. Do not back off. Quick refeeding and working on fear food is important. The faster they gain back the lost weight the better the outcome. That is evidence-proofed.

My d was 17 when she got sick with AN and she went IP for 3 months here in Germany and I got a totally sick and distraught child back. We then did FBT and now 18 months later she is a happy young woman again and off to University since this week. Last year they told us here in IP she will never recover and needs to live in a psychiatric ward for the next years...
She is not completely recovered yet, but about 90 % and we work on the last 10 %. It takes time for the brain to recover but it is possible.

Please come here and ask your 1 million questions. We are open 24/7 and there will always be nice parents here that have been in your shoes.

Tina72

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d off to University now 22 months after diagnose, still doing FBT and relapse prevention 
Baja

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Reply with quote  #3 
Thanks Tina, I’m Belgian and fine with either German or English (or French or Flemish[wink]. DANKE für deine Nachricht, THANK you for your reply. It’s very sad there is not one single FBT therapist in Germany. Very sad. Thanks to you I will not waste my time searching for one but continue the helpful support from Eva Musby (spoke several times with her) and Willowtree (hopefully soon). Any other suggestion I would be grateful. I’m very determined to save our daughter’s life even if this is the hardest thing I have ever done. It’s so encouraging to hear your d has fully recovered.

Does anyone else have experience with going against doctor’s advice and how not to completely blow bridges (still need blood and weight checks...)?

Viele Grüsse,
Baja
Ronson

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Reply with quote  #4 
Hi

We only have weight checks - no other medical checks and at the moment my d does not see the therapist except to get weighed as I decided it just didn’t help and if anything it made things worse. This is no reflection on our therapist who is qualified in FBT but more to do with d mental state and how the sessions affected her. I just stood my ground - you know what is best for you and your d and how to make her better. Unfortunately sometimes the professionals don’t in this illness - sometimes due to outdated beliefs and sometimes due to trying to fit it into a specific set of rules. Stand your ground with the professionals - tell them what you need - print off some of the information sheets about the evidence about weight restoration and then ask them to support you with regular weigh ins and any other medical checks which may be needed. Good luck
tina72

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Reply with quote  #5 
Hi Baja,
Eva just asked me if I would get in contact with you [wink]
Please check your email account...

By the way, willowtree is in fact Nr. 2 on my list above.
And I am really impressed that you speak 4 languages!!!

Tina72

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d off to University now 22 months after diagnose, still doing FBT and relapse prevention 
Torie

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Reply with quote  #6 
Quote:
Originally Posted by Baja
Does anyone else have experience with going against doctor’s advice and how not to completely blow bridges (still need blood and weight checks...)?


Hi Baja, and welcome.  I am among the many here who had to go against doctor's advice.  There was no way I was going to take my d back to the nitwit who told her it would be okay if she "lost a little weight" at a time she desperately needed to keep gaining.  So I have to say that I did burn that bridge by telling that doc she was endangering my d's life. 

I wonder if your d could go to your doc for blood and weight checks?  Perhaps because my own doctor knew me better than d's doctor did, she was much better about respecting my judgment. 

My d has been in recovery for years now and is in her second year of university.  This forum saved her life.  Eva is the best!

Please feel free to ask all the questions you like. xx

-Torie

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

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Reply with quote  #7 
Thanks Ronson, this keeps me going. Glad to hear your d recovered. I follow Eva’s advice - the fact that several parents agree that she is great makes it even better:)
Ronson

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Reply with quote  #8 
My d is not recovers yet but weight restored and making progress - but yes Eva’s advice is great - I would follow that. We are lucky in Scotland as Eva is recognised and respected by professionals
tina72

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Reply with quote  #9 
Eva is great. I think there is no one here on ATDT that does NOT have her book in the bookshelf.
It is our "bible" [biggrin].

__________________
d off to University now 22 months after diagnose, still doing FBT and relapse prevention 
Baja

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Posts: 17
Reply with quote  #10 
It is mine too Tina! I got all the books that were recommended and the very first days I scanned through but found it all quite depressing albeit informative. Most books seem to focus on how bad and how hard a disease it is and what parents should avoid to do. Like R Kunze’s “I'm tired, weak and empty hearted” is ok but I find the posts on this forum much more helpful. Eva gives hands-on positive and encouraging advice, real life situations, and I immediately felt this can save lives... so glad you all feel the same!
Baja

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Reply with quote  #11 
Quote:
Originally Posted by Torie


Hi Baja, and welcome.  I am among the many here who had to go against doctor's advice.  There was no way I was going to take my d back to the nitwit who told her it would be okay if she "lost a little weight" at a time she desperately needed to keep gaining.  So I have to say that I did burn that bridge by telling that doc she was endangering my d's life. 

I wonder if your d could go to your doc for blood and weight checks?  Perhaps because my own doctor knew me better than d's doctor did, she was much better about respecting my judgment. 

My d has been in recovery for years now and is in her second year of university.  This forum saved her life.  Eva is the best!

Please feel free to ask all the questions you like. xx

-Torie


Thank you for the welcome Torie. I have not been on a Forum since I was pregnant 16 years ago and a bit reluctant to join, but this is so great! I will get over my inhibition towards doctors and try to follow my own gut feeling...
Baja

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Reply with quote  #12 
Quote:
Originally Posted by Ronson
My d is not recovers yet but weight restored and making progress - but yes Eva’s advice is great - I would follow that. We are lucky in Scotland as Eva is recognised and respected by professionals


Good to hear Ronson - as our d is not weight restored yet may I ask whether keeping weight continues to be difficult or are you just vigilant? At the moment we don’t even dream of adding fear foods and our d is convinced she will be vegan forever.. but one battle at a time...
Ronson

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Reply with quote  #13 
We are still vigilant and watch all meals except lunch at school - she is weighed weekly and although weight restored is still gaining - we want extra weight. We add a lot of oils to her food as well to gain. My d is vegetarian and we have respected that - vegan would be difficult though
Ocras68

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Reply with quote  #14 
Please, please, ignore that doctor’s ridiculous advice. Do not back off. All you would be doing is giving the eating disorder a chance to take hold again with a vengeance. Weight restoration is vital.
Could you change doctor?
Follow Eva Musby’s brilliant advice and stay strong.
hopenz

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Reply with quote  #15 
Hi Baja and welcome from me too. I’m sorry you needed to find us here, but so glad you did. Between Eva and the wise and generous community on this forum, you and your d are in great hands.

May I recommend a little book by Maria Ganci, ‘Survive FBT: skills manual for parents undertaking Family Based Treatment for child and adolescent anorexia nervosa’. It’s short, practical and easy to read and refer back to, and I think it may be a great little guide for you, especially in the absence of an FBT therapist.

Please come back often and let us know how you get on.

Warmly
Hope
Baja

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Reply with quote  #16 
Quote:
Originally Posted by hopenz
Hi Baja and welcome from me too. I’m sorry you needed to find us here, but so glad you did. Between Eva and the wise and generous community on this forum, you and your d are in great hands.

May I recommend a little book by Maria Ganci, ‘Survive FBT: skills manual for parents undertaking Family Based Treatment for child and adolescent anorexia nervosa’. It’s short, practical and easy to read and refer back to, and I think it may be a great little guide for you, especially in the absence of an FBT therapist.

Please come back often and let us know how you get on.

Warmly
Hope


Thanks @Hope. Got the ebook:). So glad to meet you all here ❤️
Baja

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Reply with quote  #17 
Quote:
Originally Posted by Ocras68
Please, please, ignore that doctor’s ridiculous advice. Do not back off. All you would be doing is giving the eating disorder a chance to take hold again with a vengeance. Weight restoration is vital.
Could you change doctor?
Follow Eva Musby’s brilliant advice and stay strong.

Dear @Ocras, thanks. We will find a solution for weighing. The worst is our d heard the advice and is convinced she can do it. Today was okish but the next crisis moment will come and she will claim independence... will need strength for that 💪🏻
Mamaroo

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Reply with quote  #18 
Hi Baja

Welcome for me as well. Like the others have said, don't stop feeding. I can't believe the dr would say that (actually, yes I can, my gp didn't think there was a problem when my d lost some weight).

You need to keep feeding, even beyond when she reaches her goal weight, because her metabolism will shoot up and stay high for a very long time.   

__________________
D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
Baja

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Reply with quote  #19 
Thanks mamaroo, hope, ocras, ronson, tori and tina! I have another question: how did you get your d to accept the fbt and refeeding? I know that logic doesnt work and I started off 4 weeks ago with just informing her that I would serve meals until she is weight restored, but it is hard on her to accept and she negociates portions and autonomy, especially after what the doc said... I feel she only makes it harder for herself, isnt it?
Ronson

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Reply with quote  #20 
Hi

With great difficulty - we did life stops until you eat - so no phone/I pad etc until eating had started. She tried to negotiate and there were a number of very very difficult and lengthy meals but we stood our ground.

We were lucky in that we had a diet plan from the dietician which stated that she needs between 2200-3000 cals a day and had ideas for meals and snacks. These can be obtained off some of the websites which could be useful. I won’t lie though the first 4-6 weeks were horrendous - we had a two hour battle over 2 biscuits- went through a whole packet as biscuit after biscuit was thrown across the room.

With perseverance though it gets easier and now d eats with only occasional complaint.

Don’t do the negotiation though - stick to phrases such as - this is what is right for you - you can have your phone when you start eating etc. Plenty of distraction at meals too - maybe cards, a film - anything. This has also lessened now as d starting to get better.

It really is hard but so worth it when they start to gain weight and they start to get their life back
tina72

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Reply with quote  #21 
It is hard to accept for the patient but once you fought that through it gets easier. You really need to be strict and to not engage in negotiation at all. Not about what is served, not about portion sizes, not at all.
"This is your meal, please take the fork and start to eat it. I know what the right portion is and what you need. I am the expert. I studied a lot of books and I know what to do. Trust me." That is your mantra. 5-6 times a day.
You are in fact not discussing with your d, you are discussing with the AN. Once I realised that I decided that AN is a terrorist and I will not discuss with terrorists in my home. So here is the front door, AN!
Imagine your d was 2 years old and she would have decided to leave the garden and to play near the highway. You would not have discussed that with her. You would have told her that playing besides the highway is impossible and she has to come back into the garden.
AN is playing near the highway. It is a life threatening disease. She needs to come back to the table and eat. No negotiation about that.
Tina72

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d off to University now 22 months after diagnose, still doing FBT and relapse prevention 
tina72

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Reply with quote  #22 
Quote:
Originally Posted by hopenz

May I recommend a little book by Maria Ganci, ‘Survive FBT: skills manual for parents undertaking Family Based Treatment for child and adolescent anorexia nervosa’. It’s short, practical and easy to read and refer back to, and I think it may be a great little guide for you, especially in the absence of an FBT therapist.
Warmly
Hope


That is really a great book, hopenz.
Another great book I want you to read as soon as you find some time is "Decoding Anorexia" by Carrie Arnold. She is a biochemist and a former patient and she describes in a very good way how AN works in the brain. When my d was better I explained a lot of those processes to her and she understood that a) it was not her choice to get sick and b) it is a biochemical disease like diabetes and she is not an alien and it can be treated like diabetes. So she felt less guilty and learned to accept that this is a "normal" disease and she began to work with us together as a team and to seperate herself from that disease.



__________________
d off to University now 22 months after diagnose, still doing FBT and relapse prevention 
Baja

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Posts: 17
Reply with quote  #23 
Quote:
Originally Posted by tina72


That is really a great book, hopenz.
Another great book I want you to read as soon as you find some time is "Decoding Anorexia" by Carrie Arnold. She is a biochemist and a former patient and she describes in a very good way how AN works in the brain. When my d was better I explained a lot of those processes to her and she understood that a) it was not her choice to get sick and b) it is a biochemical disease like diabetes and she is not an alien and it can be treated like diabetes. So she felt less guilty and learned to accept that this is a "normal" disease and she began to work with us together as a team and to seperate herself from that disease.




Am reading both now - decoding will need a little time...
Baja

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Reply with quote  #24 
So yesterday phonecall with psychiatrist and I’m puzzled... 4 weeks ago she sent us off with a diagnosis of anorexia/orthorexia and a calculation of her weight restoration curve which should take about 12-16 weeks at a rate of 0.5 kg per week. No weight gain she would need to go to hospital. I got a list of 5 books and a name of a therapist to contact. Now d gained 2 kg in 4 weeks and it has been hell for her (and us). Dr says that next week we will discuss “slowing down to maybe 3-400g per week because for home 500g is a bit much”. Still no meal plans or anything. Now I get the impression that they never wanted our d to get weight-restored at home... but they don’t know FBT, Eva and ATDT...

Willowtree suggests I show them our parental competence. Scientific data. Our own meal plans even if they were only vague? Will talk to her tomorrow

We have been improvising rich nutrients (vegan most of the time!) but no way to calculate calories.... I more and more start to think that I should try to write down what we ate the past weeks (I only have a rough idea, it was all so stressful...). Do you think that’s worth the effort or am I loosing my time and should better continue to focus on better refeeding meals for d? You mentioned some meal plan websites, which are good? I wrote down the ones in the “surviving” book... determined....
tina72

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Posts: 1,864
Reply with quote  #25 
"Now I get the impression that they never wanted our d to get weight-restored at home... but they don’t know FBT, Eva and ATDT..."

I had that impression, too, and they did say to me directly that we cannot refeed her at home because "that´s not possible".
Sad enough that they do not know FBT, Eva and ATDT. Seems to me like a cardiologist does not know anything about heart transplantation...

"Willowtree suggests I show them our parental competence. Scientific data. Our own meal plans even if they were only vague?"

Good idea but maybe lost time. In most cases I experienced they do not want to learn something about FBT. If that is their profession they should already know the scientific data. You do not explain a calculator to your architect, do you?

"I more and more start to think that I should try to write down what we ate the past weeks (I only have a rough idea, it was all so stressful...). Do you think that’s worth the effort or am I loosing my time and should better continue to focus on better refeeding meals for d?"

I would start to write that down but NOT for the psychiatrist but for YOU. I did it and in some weeks it helped me to see what has worked and what not. We had a written meal plan that was at the fridge door and my d knew what was on it for the next week so it was easier for her and we had less discussions. But some kids freak out knowing it before so you need to try. And yes, continue to focus on refeeding ideas. That is your only job at the moment.

I cannot help much with websides. We had 3 meals 2 snacks. I cooked like my grandma with oil, butter and cream on everything. I bought the high calorie version of everything that was served. After 2 weeks hanging around in the supermarket I knew which bread, cookies and yoghurt had the most calories. We are not vegetarien. We ate 2x meat, 2x fish and 3 times vegetarian every week. Tuesday was noodle day for example. So every Tuesday noodles with different sauces. No negotiation about that. Wednesday and Saturday was fish day. And so on. I can send you an old meal plan from refeeding time if you like.

Search for "meal plan" with the search button, that might give you some ideas. And for "high calories".

" Dr says that next week we will discuss “slowing down to maybe 3-400g per week because for home 500g is a bit much”. "
Do not take your d to that meeting or ask the Dr to discuss that with you alone. Otherwise you will have the next discussion with her. Is she weighed blind? Does she know how much she gained?

Tina72

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d off to University now 22 months after diagnose, still doing FBT and relapse prevention 
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