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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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Gisa60
Hello dear members, this is my first time in this forum and I hope someone can help me. My daughter is 25 years old and has been suffering from Anorexia for 9 years. She has several hospital stays behind and had a relapse every time. She is 1,70m tall and weighs 32 kg. Does anyone have experience with FBT for young adults and can give me advice? Does anyone know a clinic or doctors in Germany, who treat after FBT? I am grateful for every tip!
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Enn
Hi Gisa60, 
Welcome to the forum and hope you find the information you need to help your d. 
Does your d have a medical team in place over the last few years? What can we do to help? 
There is FBT for young adults.
https://anorexiafamily.com/family-based-treatment-young-adult/
https://cfe.keltyeatingdisorders.ca/news/caring-transition-age-youth-using-new-form-family-based-therapy-young-age-group
https://www.aroundthedinnertable.org/post/promising-study-for-fbttay-transition-age-youth-1625-9644992

In Germany I think care is quite variable and some have had trouble getting good evidence based care. 

https://www.aroundthedinnertable.org/post/informationen-über-fbt-und-maudsley-therapie-auf-deutsch-9514879?pid=1308590348

Please read around the FEAST website the  family Guidelines can be very helpful. 
There is a German translation as well.

https://www.feast-ed.org/family-guide-series/

I do not have any experience with Germany and eating disorders care and I have found some clinics on the internet. I cannot vouch for their reliability,
https://www.edreferral.com/germany/treatment-center
https://www.dritter-orden.com/clinics_and_special-fields/centres/TCE_treatment-centre-for-eating-disorders.php

Please ask all the questions you have. We do wish to help in anyway we can.
All the best,
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Foodsupport_AUS
Welcome to the forum. Sorry that you have had such a long journey with AN already. FBT is most commonly recommended early in the illness as this is where it has had its successes, however some people have managed to use similar principles including with young adults many years into the illness. Your daughter however sounds as though she is likely to be physically very unwell and is at high risk of re-feeding syndrome and medical instability, her BMI is only 11. This requires urgent medical intervention.  With that in mind she may require hospitalisation and refeeding before it would even be safe to start FBT at home. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Enn
Very good point Foodsupport. Please ensure your d is medically assessed, Gisa.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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ValentinaGermania
Hallo und willkommen!
Hier kommt "erste Hilfe":
https://www.aroundthedinnertable.org/post/informationen-%C3%BCber-fbt-und-maudsley-therapie-auf-deutsch-9514879?pid=1308590348
https://www.aroundthedinnertable.org/post/my-kid-is-an-adult-10057483?pid=1308617137

Deine Tochter scheint lebensgefährlich untergewichtig zu sein. Sieht sie regelmäßig einen Arzt? Sie muss evtl. dringend ins Krankenhaus und evtl. sondiert werden. Bei diesem niedrigen Gewicht scheint mir das Aufpäppeln zu Hause gefährlich (Refeeding-Syndrom).
Es gibt in Deutschland leider keine Kliniken, die FBT anbieten. Obwohl das die weltweit beste Therapieform ist.
Man kann es zu Hause machen, wenn es der Gesundheitszustand zulässt. Dafür gibt es Hilfe per Skype oder Dr. Roslyn Hopf in Königstein bei Frankfurt (und uns hier🙂). Wie gut ist Dein Englisch oder würdest Du einen deutschsprachigen Therapeuten vorziehen?

Dass Deine Tochter hier nach jedem Klinikaufenthalt einen Rückfall hatte kann ich mir sehr gut vorstellen bei den Therapieformen, die hier angeboten werden. Meist haben sie bei Entlassung noch nicht mal ein gutes Gewicht erreicht und sind nur nicht mehr untergewichtig. Sie sollen selbstständig und ohne Hilfe essen können was ein Witz ist. Wir haben unsere Tochter (heute 19) nach 3 Monaten aus der Klinik geholt, zu Hause FBT gemacht und seit nun 2,5 Jahren keinen Rückfall gehabt. Sie hat feste Regeln und wir haben einen "Vertrag" und sie hält sich daran und hat Einsicht, dass sie krank ist und Hilfe braucht. Sie isst ohne Probleme und hält ihr Gewicht und lässt sich gerne helfen, wenn es Probleme gibt. Sie hat die Schule fertig gemacht und ist jetzt an der Uni. Das alles dank FBT und den tollen Eltern hier, die uns wunderbar geholfen haben. Ohne ATDT wäre meine Tochter heute wahrscheinlich nicht mehr am Leben.

Ich habe Dir eine Privatnachricht geschickt! 🙂
Keep feeding. There is light at the end of the tunnel.
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ValentinaGermania
scaredmom wrote:

I do not have any experience with Germany and eating disorders care and I have found some clinics on the internet. I cannot vouch for their reliability,
https://www.edreferral.com/germany/treatment-center
https://www.dritter-orden.com/clinics_and_special-fields/centres/TCE_treatment-centre-for-eating-disorders.php


Scaredmom,
thanks for your help but these links do not lead to good ED treatment at all.
Most of them link to general psychiatric wards with no ED experience.
Some link to Schön Kliniken, that is a big player here on the ED market and I think that is what Gisa60s d already did go through with no effort. They do old fashioned ED treatment here, excluding parents and waiting for insight and asking the patients to be in charge themselves.
Some lead to therapists that treat depression but are not specialised in ED.

Better help is to give parents from Europe the maudsley parents treatment providers list:
http://www.maudsleyparents.org/findtreatment.html
There are only 2 therapists listed for Europe but these can help transferring to collegues that know what they do.
Keep feeding. There is light at the end of the tunnel.
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Enn
Thanks for correcting that Tina. I do appreciate that .
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Kali

Dear Gisa60,

Welcome to ATDT. I hope you will find support here and the information necessary to help your daughter. 

As others have noted, your daughter's weight is low and she needs to be seen by a doctor urgently if she is not already in the hospital. What care is she currently receiving?

I would encourage you to please take her to the emergency room today and try to start the refeeding in a hospital setting to avoid refeeding syndrome and to make sure her heart, electrolytes and other vital signs are being carefully monitored by professionals. In my opinion, because of her low weight, she would need a higher level of care right now than FBT at home could provide.

So one scenario could be: your daughter is hospitalized, her weight is brought up there whether by tube feeding or eating, and then when she is at a better weight and more stable and she is ready to be released from the hospital, you could certainly do FBT at home under the care of an FBT therapist and while she is still being carefully monitored by an MD.

Here is an interview with a family who were able to help their young adult daughter AFTER she came home from the hospital, using FBT.

http://maudsleyparents.org/family7.html

Please ask any questions you might have, we are here to support you and we all hope for the best outcome for your daughter.

warmly,

Kali

 

 

Food=Love
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ValentinaGermania
Kali,
the problem here in Germany is
a) she needs to want to go to emergency room, it is not possible against her will
b) she needs to nearly die to be admitted to hospital then because the staff there knows NOTHING about anorexia
c) they will not start refeeding by tube against her will because this must go to court here before unless she has signed a "Vorsorgevollmacht" for her mom
d) in a normal hospital setting there is no refeeding at all unless you are nearly dying from starvation (a lot of elder people here that must go to hospital for surgery or something like that come back undernurished because of not enough food and drinks offered in hospital)

I hope Gisa60 will fill us in about her ds state soon but that is not easy at all here.
In most cases you go to emergency room you are send home again and they do nothing. Sad but normal here.
Keep feeding. There is light at the end of the tunnel.
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Kali

Hi Tina,
Yes it is also the same here, if someone refuses care the ER will not see them. However—that can be overridden. If a person is deemed to be a danger to themselves or others they can be placed on what is called a 72 hour hold and assessed even against their will. And a bmi of 11 would clearly indicate that a person was a danger to themselves. Has Germany no provisions for situations like that? What if someone is having a psychotic episode or has attempted suicide? Will the hospital not admit them for assessment and care even though they might be too ill to understand they need to be in the hospital?

Always good to learn more about how things are in different countries!
Thanks, Tina

Kali

Food=Love
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Enn
tina72,
not to challenge you but a general question. No medical facility in Germany would be able to assess medical instability due to malnutrition?  And then admit her and care for her to bring up her nutritional status?It seems very frightening to say the least. Our system  in Canada is similar to what Kali’s is in the US.

shocking if that is what is happening in Germany.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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ValentinaGermania
Kali wrote:

Hi Tina,
Yes it is also the same here, if someone refuses care the ER will not see them. However—that can be overridden. If a person is deemed to be a danger to themselves or others they can be placed on what is called a 72 hour hold and assessed even against their will. And a bmi of 11 would clearly indicate that a person was a danger to themselves. Has Germany no provisions for situations like that? What is someone is having a psychotic episode or is suicidal. Will the hospital not admit them for assessment even though they are too ill to understand they might need to be int he hospital?

Always good to learn more about how things are in different countries!
Thanks, Tina

Kali



There is no 72 hour assessment here. If you are a danger for yourself a doctor can advice the admission to a psychiatric ward but this must go to court before and signed by a judge. This will not happen on weekeneds and not within 24 hours I fear.
And then she will be send to a normal psychiatric ward and not to an ED ward. And that will help nothing as they are a) not prepared to tube feeding b) not informed and experienced about refeeding syndrom and no emergency ward there and c) they will want her to eat herself there.
So yes, you will be brought to a locked psychiatric ward if you are suicidal here but that is all. They will lock you in and care for that you do not harm yourself. They cannot help with refeeding. They have no staff for that. A 1:1 supervision like in UK is not thinkable here.
Keep feeding. There is light at the end of the tunnel.
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ValentinaGermania
scaredmom wrote:
tina72,
not to challenge you but a general question. No medical facility in Germany would be able to assess medical instability due to malnutrition?  And then admit her and care for her to bring up her nutritional status?It seems very frightening to say the least.
shocking if that is what is happening.


If she is in a very bad state for her heart for example she will be admitted to a cardiologist ward but there they will not help her with eating.
It is sad but that is reality here. They have no staff for that. There is one nurse for about 20-30 patients here at the same time. If there are no family members around nearly 24/7 you are lost in a German hospital. It would be her mom that needs to feed her in hospital or nobody else will do.
They are not prepared for those patients here and have no experience with it. Patients go to an ED clinic here or get chronical ill and die years later at home. And to be admitted to a ED clinic here (and they are bad in addition) you need to wait about 6-12 months on a waiting list...

I was with my d in emergeny room last October and we waited 11 hours to see a doctor. She was not offered any food or water in this time (the nurse said to me "we are no restaurant here"). If I had not been with her she would have not eaten for 11 hours as there was no food automate in emergency ward and she was not allowed to go out and get some food. Thanks to ATDT I was prepared for this situation and had filled my bag with muesli bars when the ambulance came.
Keep feeding. There is light at the end of the tunnel.
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Enn
So can people move out of Germany and get help outside of Germany easily? 
By that I mean can you access another country’s ED services or would they not allow or pay for that?
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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ValentinaGermania
No. They pay for surgery if you break your leg on holiday in UK but not for something that was already there before you went on holiday.
You can move to UK to get access to their health system but you need to really move there and I do not know how long it takes to get access to cahms then.
Only possibility you have here is doing FBT alone and have a team with GP or pediatrician or if you have enough money to pay that private to go to US or UK. But that costs a lot of money, in most cases more than you would earn with normal work in a year.
You are lost here with an ED.
Keep feeding. There is light at the end of the tunnel.
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Enn
Thank you for that explanation. 
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Kali

Tina,

Please understand that in the case of a patient with a BMI of only 11 the only responsible thing for us moderators to do is to advise immediate and urgent medical assessment. Her medical health may be seriously compromised.

How would one do that in Germany? 

Thanks,
Kali


 

Food=Love
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Kali
Hi Gisa60, 
I'm attaching the AED guidelines for medical care for eating disorders, in case you wish to take a look at it.

warmly,
Kali
Food=Love
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ValentinaGermania
I really understand that her state is very serious, Kali.
Here in Germany you can go to emergency room and ask for help. If she is dried out they will give her liquids and then send you home. If she has heart issues they will keep her but no food will go in (at least not if she is not eating herself). If she is physically stabil (and we all know that this sometimes happens even at that low bmi) she will be send home again. And if she refuses to even go to emergency room nothing will happen. You can call an ambulance but they will not take her with them if she refuses.
That is sad but that is ED reality here. That is why people with ED in Germany are lost if they have no family to help.

Without more information there is nothing we can do. If she refuses any help I would tell her mom to go to the court and get "Vormundschaft/Pflegschaft" for her. Then she can decide. But that takes normally weeks.
That is why it is so important to make them sign a "Vorsorgevollmacht" here when they are 18. If you have that paper you can talk to all doctors, decide for her and get her best help that is available. Best would be her mum gets her to sign that. I only need to wave with this paper now and all doctors talk to me.
Keep feeding. There is light at the end of the tunnel.
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