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deenl

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Reply with quote  #26 
Quote:
Originally Posted by Baja
Dr says that next week we will discuss “slowing down to maybe 3-400g per week because for home 500g is a bit much”.


500g was our minimum weekly target. Your doc seems to be saying that home and hospital should have different rates of weight gain. Where is the logic in that? It does happen that for various reasons weight gain at home is slightly less than in patient but not intentionally.

Quote:
obtain a desired weight gain goal of at least one to two pounds (0.5 to 1 kg) per week.

Muhlheim, Lauren. When Your Teen Has an Eating Disorder: Practical Strategies to Help Your Teen Recover from Anorexia, Bulimia, and Binge Eating (Kindle Locations 1191-1192). New Harbinger Publications. Kindle Edition.

This is a very recent book so totally up to date. this is the target for home weight gain (obviously some weeks will have more and some less.) You notice her emphasis on at least.

in your shoes I would be very cautious about letting my child talk to any professional who might say such a thing directly to my child. imagine how hard refeeding woul be after such a comment?

Warm wishes

D

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2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Torie

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Reply with quote  #27 
Quote:
Originally Posted by deenl
in your shoes I would be very cautious about letting my child talk to any professional who might say such a thing directly to my child. imagine how hard refeeding woul be after such a comment?


I agree with Tina and deenl - I would be very worried about letting this "professional" speak to my d under these circumstances.  I would be thinking very hard how to avoid that.

You are doing such a great job!  I wonder if "the professionals" are helping in any way or if you can just stop seeing them?  xx

-Torie

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

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Reply with quote  #28 
Hi Baja,

I completely get the frustration you must have with the German service. I am from Germany, but living in the UK and luckily found the support of this forum and CAMHS, who were actually helpful to us.

But I found so much ingorance among my friends and family from Germany - some of whom were professionals - that needed to be included in the principles when we were traveling. So I put together a website with what I thought were the key information with links to English sites and videos but also translations of the classics (Janet Treasure) available in German. Here it is:

https://magersuchteltern.wordpress.com

Feel free to share it if you think it saves you a lot of explanation and discussion. Those who receive it, are free to read it whenever they want and it is not up to you to convert them. I found that factor extremely liberating, because your child needs all you energy - you cannot waste it by trying to educate the uneducated.

Good luck with everything!
daffodil

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AN D began at 11 1/2, after full recovery self-harm and now (16 years) severe sleep issues, slight AN relapse but she manages herself, getting full assessment on ASD now.
Foodsupport_AUS

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Reply with quote  #29 
A handy resource Daffodil. Thank you Daffodil for putting it together. 


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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.
tina72

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Reply with quote  #30 
Hi daffodil_UK,
I read your webside last year and I was so sorry that there was no possiblity to get in contact with you! Thanks a lot that you did that, it was one of my first contacts with FBT and the "other way" and it gave me a lot of hope to get my d out of bad german IP last year and I was so thankful that you did that.
Tina72

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d off to University now 2 years after diagnose, still doing FBT and relapse prevention 
daffodil_UK

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Reply with quote  #31 
@tina72 - Wow, I am so glad you are writing that and seeing that it actually helps some people. Best of luck to you! This must be hard to fight an entire system with FBT and doing it on your own. Huge respect! 

All best wishes to you!

If you don't mind, I'll add my link in the thread "Informationen über FBT und Maudsley Theary auf Deutsch" because it might be something parents come across anyway when they come to this forum.

Thanks for doing the brilliant collection there!

Daffodil

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AN D began at 11 1/2, after full recovery self-harm and now (16 years) severe sleep issues, slight AN relapse but she manages herself, getting full assessment on ASD now.
Baja

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Reply with quote  #32 
@daffodil_uk amazing! Thank you so much for this! The coming 72h will show whether and how the local docs/therapists will be on board or whether we go solo... you and @tina72 are unvaluable support because you understand the situation in DE. Plus all others who replied: THANK YOU, it’s so good to know that FBT works, ist gives me the self-confidence I was lacking....

I just feel sorry I don’t find time to write a lot and read into the other Topics here... still overwhelmed with reading cooking feeding supervising sports d should limit in spite of extremely warm weather here. Talking to h, coach, therapist.... why does a day only have 24h?

Baja

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Reply with quote  #33 
D wants to write a book now and started making notes. She wants me to note down my own experience without showing her so in 18 months (if she pulls it through she might finish high school /abi then...) she wants to publish a mother-daughter diary. She doesn’t know about atdt but every person she talks to in confidence tells her the story of a teenager with AN and she is writing these down on her phone. She puts her own feeling of helplessness and loneliness into song texts... do your d take creative approaches? I hope d is not dwelling too much but on the other hand I think she is just like me, intuitively looking for a self-made therapy that might work better than the « imposed waste of time »...
tina72

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Reply with quote  #34 
Quote:
Originally Posted by daffodil_UK
@tina72 - Wow, I am so glad you are writing that and seeing that it actually helps some people. Best of luck to you! This must be hard to fight an entire system with FBT and doing it on your own. Huge respect! 

All best wishes to you!

If you don't mind, I'll add my link in the thread "Informationen über FBT und Maudsley Theary auf Deutsch" because it might be something parents come across anyway when they come to this forum.

Thanks for doing the brilliant collection there!

Daffodil


YES, please add it on my other thread, I just forgot that I read your pages last year. It was sooo difficult to find any information about FBT on german websites.
It was hard to do it on our own but in fact we were not alone, we had Roslyn Hopf for some months who was brilliant and we had you all on ATDT. And in the end it was not so hard as to stay in that german system and see my d suffering day by day.
Thanks again. We need all available information here to change that old fashioned system!
Tina72

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d off to University now 2 years after diagnose, still doing FBT and relapse prevention 
tina72

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Reply with quote  #35 
Quote:
Originally Posted by Baja

I just feel sorry I don’t find time to write a lot and read into the other Topics here... still overwhelmed with reading cooking feeding supervising sports d should limit in spite of extremely warm weather here. Talking to h, coach, therapist.... why does a day only have 24h?


Your time to help others will come. It took me 6 months to be able and to find time to post here regularly. I admire all the parents that find time to write here in the bad days.
Take your free minutes to care for yourself first. You are the most important person in your ds universe now.

Tina72

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tina72

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Reply with quote  #36 
Quote:
Originally Posted by Baja
D wants to write a book now and started making notes. She wants me to note down my own experience without showing her so in 18 months (if she pulls it through she might finish high school /abi then...) she wants to publish a mother-daughter diary.


Looking back I would say be careful with that.
ED and FBT are very strange and very bad experiences. Your d will say and do things that you never expected. You will need time to forget that again (I hope you will ever) and she will not remember it any more in 18 months. So reading your true and honest experiences will be a trauma for both of you.
In my experience it is a bit of a mode here to publish books "how I survived ED". But in my family we only want to forget what has happened now and live a normal family life and I am the only one who needs going to ATDT to cope with all that has happened (that is my therapy in fact).

So if it helps her to write all that down let her do that but I hope she will not be busy with all this AN stuff in a few months and use her 24 h to do normal life stuff and not write all these crazy things down...
And if it helps you write all that down but please be careful what you give her to read. It might increase all these feelings of guilt and sorrow that are in her head anyway.

Tina72

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Torie

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Reply with quote  #37 
Quote:
Originally Posted by tina72
Looking back I would say be careful with that.
ED and FBT are very strange and very bad experiences. Your d will say and do things that you never expected. You will need time to forget that again (I hope you will ever) and she will not remember it any more in 18 months. So reading your true and honest experiences will be a trauma for both of you.


Agree.  Personally, I wouldn't openly disagree if ED-D had suggested that, but I also wouldn't encourage it.  I might say something like, "That's an interesting idea."

The goal is to drag her out of her ED thoughts as soon and as fully as possible.  Anything that creates/ prolongs ED thoughts is a danger.  xx

-Torie

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tina72

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Reply with quote  #38 
Hi Baja,
how was your appointment on Tuesday? Any news?
Tina72

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Baja

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Reply with quote  #39 
Mayday !!! Doc appointments were OK though we seem to have entered phase 2 way to early, for her to make choices and eat more independently ... today a bit of a crisis on top so I could use your advice: she complained about some diarhea this morning and I have the feeling she will refuse lunch (rice with lentils and spinach). Would you still insist her to eat even if she has bad stomach ????? Thx!!!
deenl

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Reply with quote  #40 
Hi Naja,

In our house we did. But I usually changed the menu to something a bit gentler on the stomach like chicken soup, the highest calorie rolls I could but with lots of butter served with juice. Perhaps make snacks a bit bigger and meals a bit smaller.

Hang in tbere

D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Baja

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Posts: 29
Reply with quote  #41 
Quote:
Originally Posted by tina72
Hi Baja,
how was your appointment on Tuesday? Any news?
Tina72


Doc said weight increase of 1.9 kg in 4 weeks is very good and a lot/unusual at home. Mood swings and difficulties are normal reactions. IP not needed at this stage, recommend to continue refeeding even if slightly slower would also be ok.

Doc praised d for being able to choose from different set food options for breakfast and snacks. Stick to 5-6 meals, meals are not to be skipped or partialised (only fruit)- if portion is not manageable this is a pitty but ok; however fruit should always be accompanied with protein carbs and lipids (yoghurt with müsli or nuts). In FBT this would probably be phase 2, for which it is still a bit early as we are still refeeding....

D accepted blind weighing for next 6 weeks - doc will only inform if weight increase is less than 300g or more than 500g.

D will see therapist next week - no decision yet about recommended regular therapy, but this would help her to make next steps and feel better. She first refused but now seems more inclined and therapist makes a good impression and at least accepted our “crazy method” although she fears and wants us to be aware that supervising and being so close to the child is in a second phase not good because she needs to go against us in puberty...

D hates not being listened to, when she informs once that certain foods are not ok this should be respected. Dad should not keep repeating that he wishes d ate chocolate.

We informed school that d has AN and needs to put priority to gaining weight - headmaster is very supportive and for this reason she might miss certain classes or not be able to finish certain assignments. they will inform sports teacher that she can participate but moderately. Sports is problematic, she tends to overdo it...

So fazit: we wait for weigh-in next Monday to start FBT again, hopefully...
deenl

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Reply with quote  #42 
One other thing Baja. It seems totally unbelievable but the illness drives our kids to desperate measures - please check her room etc for laxitives and her computer to check that she has not been following pro-ana websites. Both are extremely dangerous and we need to take all measures to protect them.

Wishing you strength and courage,
D

__________________
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Torie

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Reply with quote  #43 
Quote:
Originally Posted by Baja
Would you still insist her to eat even if she has bad stomach ?????


Sorry, yes, most here insist on every meal, every day, no matter what difficulty has popped up.  We feed on through influenza, wisdom tooth removal, broken relationships, failed tests, everything.  Some diarrhea definitely would not stop us.  ED needs to see that there are no excuses or reasons that will be accepted as cause for missing a meal.

I agree with deenl that it is important to check her purse/backpack/locker/trash etc for signs of laxative use.  Sadly common to have that problem.

I wonder if you could offer her choice of her normal lunch or a lunch that might sound sympathetic but actually ED would hate more.  For example, "It sounds like you're having a difficult time.  Would you prefer this enormous muffin and smoothie instead of your regular __?"

Keep swimming. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
tina72

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Reply with quote  #44 
Quote:
Originally Posted by Baja
Mayday !!! Doc appointments were OK though we seem to have entered phase 2 way to early, for her to make choices and eat more independently ... today a bit of a crisis on top so I could use your advice: she complained about some diarhea this morning and I have the feeling she will refuse lunch (rice with lentils and spinach). Would you still insist her to eat even if she has bad stomach ????? Thx!!!


Yes. She needs to eat although she is sick. Give her something that is easier digestible and I would search for laxatives like Deenl said. It might be an infect but normally the patients have problems with constipation and not with diarhea at that state.

Tina72

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tina72

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Reply with quote  #45 
"Doc praised d for being able to choose from different set food options for breakfast and snacks. Stick to 5-6 meals, meals are not to be skipped or partialised (only fruit)- if portion is not manageable this is a pitty but ok; however fruit should always be accompanied with protein carbs and lipids (yoghurt with müsli or nuts). In FBT this would probably be phase 2, for which it is still a bit early as we are still refeeding..."

It is WAY TOO EARLY for phase 2. Many here started this too early (my hands up) and it is very hard for both sides when you need to go back. So very little to chose at the moment (for example strawberry yoghurt or cherry would be o.k.).

"D accepted blind weighing for next 6 weeks - doc will only inform if weight increase is less than 300g or more than 500g."
That is great. I hope that means that doc will inform YOU about increase or loss but not d?

"although she fears and wants us to be aware that supervising and being so close to the child is in a second phase not good because she needs to go against us in puberty..."
This is complete German bullshit. I think she would not have said "oh, it is against puberty when you control that your child has taken her chemotherapy medicine", wouldn´t she? And it is TOO EARLY for phase 2. Phase 2 is starting AFTER WR. Long after that when brain recovery starts and the mood changes. State, not weight. We are 22 months in refeeding and still on the edge from phase 2 to 3. No need to hurry but danger to do things too fast.
By the way, she can live puberty and have discussions with you on EVERY OTHER subject. She can colour her hair lila or wear some crazy clothes. Food is the ONLY subject she is not allowed to discuss about...and only because she is not able to make healthy decisions at the moment. That is temporary.

"they will inform sports teacher that she can participate but moderately. Sports is problematic, she tends to overdo it..."
Might be that you will need to cancel sports in school. My d did not participate before WR and she got a theoretic work from the teacher and wrote a Hausarbeit about basketball and got a normal result for that to have that in her testimony. The kids have the right to get that other work if they cannot do sports, ask for that if needed.
You may also need to ask for "Nachteilsausgleich". Use the search button and you will find the links on my thread.

Tina72


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d off to University now 2 years after diagnose, still doing FBT and relapse prevention 
Baja

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Reply with quote  #46 
Thanks all of you! We did not wish to move into Phase 2 but the doc "introduced" it and now we have a depressed d who yesterday expressed the wish to be fed IV... and I failed the opportunity to reason her back to Phase 1, logic just doesnt work, she feels fat and ugly yet still needs to gain...
tina72

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Reply with quote  #47 
Feeding IV is not possible. She will get a nasal tube, does she know what that means? When my d realised what that is (she first saw it in hospital) she started to eat...
The last thing she wanted to have was such a tube.

I am so sorry that the doc said something about phase 2. I would really think about NOT sending her to this doc alone next week. One sentence about "too much control" and "you should chose what you want to eat yourself" and this whole thing will be blown up!
Rely on Eva and Sonia. They can help you.

They all feel fat and ugly during refeeding. But that gets better after WR. They need a lot of time to learn to accept this new body.
Try not to engage in this talk. When she sees that you do not answer to this she will stop complaining 24 hours a day.

How is her diarhoe? Is she eating?

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tina72

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Reply with quote  #48 
Hi Baja,
how are you doing?
Tina72

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d off to University now 2 years after diagnose, still doing FBT and relapse prevention 
Baja

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Reply with quote  #49 
Hi @tina72 you are telepathic:). Been busy. D gained weight (hopefully without cheating) in spite of “forced stage 2” so we will have to stick to her autonomous feeding. But she is really depressed and refuses to try fear foods... I discovered non violent communication NVC and am training myself for empathy, I really feel this will help, also to cope with mood swings... and at least NVC is known and practiced in Germany as GFK:)
tina72

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Reply with quote  #50 
I am not telepatic, I think about you nearly every day. I remember how hard it was to get started. I replied to your email just some minutes ago...[wink]
Non violent communication is VERY MUCH NEEDED!


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