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freedomfighter

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Reply with quote  #51 
Thanks Tina for asking, also that you think of me so often - I am touched.  Thank you also to all for your comments and replies.

Yes I see the difference between FB and these threads, which can become quite comprehensive and are a resource because they are searchable.  Though find I need to be careful about what threads I read too because sometimes I get a bit frightened and overwhelmed about all that might be ahead.

Serious day by day survival.  Yesterday morning she broke our bedroom door and spat in my face in the evening, and Thursday night was appalling demonic torture session from 11pm-midnight but today (other then writing Sadistic Scum on our broken bedroom door) each meal has been hostile but undramatic.  So that's good.  We often have horrific melt-downs later in the evening, just when our defences have come down a little, so am far from relaxed.  Still, we have gotten through the weekend, almost, so that's an achievement.  On Tuesday we will have been at it for 4 weeks and I have to say I expected things to have normalised a bit more by now then it has.  Started anti-depressants today (for the first time in my life), so that's an achievement of sorts!  I am in no way depressed but I am extremely stressed in my body much of the time, and doc thinks that this will help me deal with that, so am choosing to believe him.

Mother's day feels very poignant.  No hint of love or affection from D but I have the privilege of knowing that we are loving her to the uttermost right now, and love is never wasted. 

Monday I am going to call our camhs therapist C, and ask if H and I can have a meeting on our own with him, before next appointment week after next with D.  Will explain to him how committed we are to re-nourishing as a foundation for recovery, and that we understand his understanding is different, but is he able to build a supportive relationship with D without undermining what we are doing?  Desperately nervous about this but hopefully we can reach an understanding.

Bless you all this coming week!
Torie

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Reply with quote  #52 
Quote:
Originally Posted by freedomfighter
 On Tuesday we will have been at it for 4 weeks and I have to say I expected things to have normalised a bit more by now then it has. 


It really sucks how s-l-o-w the progress is with this vile illness.  THat is one reason I always cheer when people pack in the calories as much as possible to get through the beginning and middle parts as "fast" as possible. 

I'm sorry Ed broke your door and then left a nasty message (as though the broken door wasn't message enough).  Perhaps you can find a small bit of solace in knowing that Ed directed this venom toward you, which might have deflected it from your d a bit.  And knowing it is GOOD that Ed despises you.  

But please remember that your real d is in there, and she loves you.  You will get her back.

Keep swimming. xx

-Torie

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

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Reply with quote  #53 
You are doing an amazing job. You have had lacklustre support but still are making progress. The fact that ED is fighting you suggests that you are getting somewhere. Hopefully that weight is going on too. Best of luck with the therapist, you can always tell them anything you want and your expectations. They just can't tell you what D is saying to them. 
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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  #54 
Hi freedomfighter,
that is great that you had some undramatic meals today. I hope that will continue. Sorry for the broken door. Hang them out [biggrin]
I think nearly every day of you and all the other parents who are in the dark times because I am so grateful to be at the end of that tunnel and I know how you feel now. Keep swimming. I cannot say how long it will take, but it will get better with weight increasing and time.

"We often have horrific melt-downs later in the evening, just when our defences have come down a little, so am far from relaxed."
Yes, evenings were the worst times, I remember that well, and even now my d hates evenings and doesn´t want to be alone in her room then and likes to hang around with us and is cuddling a lot (I know you cannot believe now that this will ever happen, I did not, too). ED is in top-form in the evenings and tells her the whole time what bad things she has done the whole day. So it is hard for you, but it is even harder for her. Is there anything you can do to comfort her a bit or to give her a bit distraction? Does she watch TV with you or can you offer her to read a book to her? We started to listen to audio books and to do a lot of tinker work. There is easter coming, could you ask her to help you to do some decoration for the house?

It is good that you are on meds, I hope that will help you to calm down a bit. It is so different how many time it takes until it gets better, some have only weeks to wait and then a long way to recovery and some need to wait longer at the beginning but then see more progress more quickly, so I hope you are the second part.

Forget this mothers day, it doesn´t count because she is not able to tell you how much she loves you. I am sure you will get in back twice. See toothfairys post about the nice card the got from her son today. It will be your turn the next year. I can only give you that hope that today my d and I are as close as before ED, even closer.

Please keep us updated. It helps to come here and vent and tell what is working and what not. Although we might not always be able to help, but we are able to listen and that is important, too.
You are not alone. We are all with you in spirit.
Send you a huge hug.
Tina72


freedomfighter

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Reply with quote  #55 
Day 35 - 5 weeks in.

It feels like we have been inhabiting a different world since the re-feeding started (and not in a good way).

However, during the course of Week 5 I have noticed a subtle turning of the tide.  More 'go away' and less 'fuck off you sadistic bitch'.  Still quite a number of very distressing episodes but she is definitely more there than she has been since this started.  This has happened so gradually that it's only noticable in restrospect.  Still very little connection between her and us.  Though she has let me kiss her head (a very quick kiss) a few times.

What would make a massive difference to her would be a good therapist/counsellor.  Have CAMHS appointment today but reluctantly we are not bringing D as we still feel very unsafe with her therapist.  Because she is now officially not 'underweight' he feels that the weight is no longer an issue at all.  I strongly feel she should probably be up towards the top of the 'healthy weight range' (historically she has always been 75-85 centile).  He says things that suggest that he kind of feels that re-feeding is no longer appropriate at this stage.  He says things like: some girls with this body-shape ARE waif-like and some parents have a problem with this.  NO!!!  I don't have a problem with D's body shape, I have a problem with her being ill.  Have had two long telephone conversations with him trying to get on the same page but haven't managed it.  It would take D 2 minutes to uncover his thinking around all this and it would pit us against each other and make her resistant to putting on any more weight and we just can't risk this.  H and I are going today to see him alone (he is expecting us to be with D). 

Yet she desperately needs someone to talk to around anxiety, perfectionism, etc and if only he could support us around the weight he could be a good person. I would feel anxious about leaving CAMHS, it feels like burning a bridge.

I have an appointment with another recommended 'regular' counsellor on Thursday, to chat to her if she would be a suitable person to see D.  She was brilliant with my friend's very distressed daughter.  However she is not an ED expert, although she has often worked with clients with AN in the past.  I just can't find an ED counsellor who shares our values around the importance of weight restoration.  How vital is an actual ED specialist? to be able to help my D?

Feel SO angry at the hours of stress caused by the double-mindedness of CAMHS. (I know they are doing their best, under-funded, etc). 

Hopefully the above makes some kind of sense.  Will be glad when today is over.  Feeling so nervous about going to CAMHS and trying yet again to argue our case and ask for the support they should be giving us.

I think I will start another thread next time I post.  Greetings to all.
deenl

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Reply with quote  #56 
Hi freedomfighter,

It is a totally other world. I used to feel home and this forum were one world and the rest a totally separate space!

So wonderful you are seeing the slight improvements. This is how it went for us. Hang in there.

Personally, I always interviewed ANY professional who had to deal with my son and often refused to leave him alone with them. It's marked on his file. I imagine they see it as one of the 'contributing factors' but I see it as a trophy. I didn't trust them and I knew my son and time has proven me right. He is 95% there in recovery and we are working on the rest. However, my son had only slight anxiety and perfectionism prior to illness and he has returned to that norm with recovery. For him, mom just reinforcing healthy standards and coping methods as needed is enough. We are 2.5 years in but my son would be restricting within a week if we took our eye off the ball. IMO, they need years of meal support to reset the natural inclination to eat just a little less.

I am sure you've seen this but here are some links just in case.

https://www.kartiniclinic.com/blog/post/appeasing-the-monster/

https://www.kartiniclinic.com/blog/post/weight-restoration-2.0/

https://www.kartiniclinic.com/blog/post/determining-ideal-body-weight/

https://www.kartiniclinic.com/blog/post/why-weight-restoration-in-eating-disorder-treatment-must-come-first/

https://www.kartiniclinic.com/blog/post/the-dangers-of-staying-slightly-below-weight/

http://www.blog.drsarahravin.com/eating-disorders/weight-gain-predicts-psychological-improvement-in-anorexia-nervosa/

The therapist obviously does not understand even a miniscule bit about state and weight. You have fought so, so hard just to get this far and a bad therapist would have you back to square one (in fact further back as your daughter would start quoting them against you) in a minute. Your gut is sending you warnings, I'd listen to it. 

No matter what you choose or how it goes, you have done great and we will be here for you. Unfortunately, there is rarely a straight path.

Hang in there,

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.
tina72

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Reply with quote  #57 
Hi freedomfighter,
great that you see little progress. Yes, these steps are tiny and you often only see them looking backwards and not the same day. Keep on swimming. Your relationship will get better. We have problems to get rid of our d today [biggrin]...
It is the right decision to see CAMSH alone today and if they cannot support you with eating, what can they do for you? She is not well although she might not be underweight in a critical state any more. You want 100 % recovery and not just "not underweight any more".

"What would make a massive difference to her would be a good therapist/counsellor."
I thought that, too and my d thought there would be a magic person who can turn a switch and everything will be fine again. No, it is not working that way.
What makes you think a therapist will make a difference? And what should that therapist do in your mind?
I saw some therapists without my d to check them and they did not support us the way we wanted so we did not dare to try it and looking backwards I would say that all they could ideally have done for her was the same we did for her and we were there 24/7. In the AN world there is no appointment right there when you need it. When you have an appointment, there is usually no problem right there, and when you have a problem, it is usually 3 a.m. and no therapist there. A bad therapist can explode all your work for weeks in just a few minutes. So be careful with that.

Have you thought about skype sessions with Eva Musby or Laura Collins (I don´t remember right now wether you are US or UK)? I think that may help you. All you need is someone who tells your d that you are doing the right thing in this state. And who gives you all a bit hope.
Please keep us updated.
[wave]

Tina72
Torie

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Reply with quote  #58 
Quote:
Originally Posted by freedomfighter
Still very little connection between her and us.  Though she has let me kiss her head (a very quick kiss) a few times.


This reminds me of the time I tried to stroke my d's hair and she said, "AAACK ... Mom, that's my HEAD!!!"  It actually makes me chuckle now - you will get there in time.

Quote:
Originally Posted by freedomfighter
What would make a massive difference to her would be a good therapist/counsellor. 


I agree with Tina that there are no guarantees that any therapist you might find will be helpful.  We have tried a few, and I'm not sure we ever did find anyone helpful.

Quote:
Originally Posted by freedomfighter
Have CAMHS appointment today but reluctantly we are not bringing D as we still feel very unsafe with her therapist. 


Good call!!!  I encourage you to continue to trust your gut on this.  The most important thing is to keep your d away from "professionals" who do more harm than good.  If you can find someone you can trust with her, great.  We all hope for that.  But you are doing a GREAT job with your d, and you may well find that that is enough.  We did.  Well, I would still love to find someone to help with her anxiety disorder, but that is another topic.

First, the refeeding.  Worry about crossing the next bridges when you have conquered the AN and can see if there are remaining issues to deal with.

Keep up the good work!!  xx

-Torie

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

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Reply with quote  #59 
Hi ff, I am truly in awe of what an amazing job you're doing under such difficult circumstances, and being able to maintain your great sense of humour, and also being able to isolate your emotions e.g that you are feeling a lot of anxiety/stress in your body - it took me such a long time to be able to work that out, that I was feeling that stress in my body but it could be separate from my 'self'. Probably doesn't make sense but i know what I mean [wink]. Anyway, genuflections from me!

I just wanted to say that I agree totally with Torie, I also never found anyone who actually helped us, most made it a lot worse and probably lengthened our journey (but who's actually to know how it would've panned out if we did things differently). YOU yourselves are doing such great, hard work. I've built up a little 'anti' about your CAMHS guy, and I wonder if he'll ever be able to 'get it' like you need him to and be helpful to your fight. If he doesn't come round to your way of thinking, then I wonder if you really need him. I can tell you that things are slowly changing in our house for the better, and that is with food and love alone. We never had it as bad as you with the violence and scorn but couldn't touch her, she was so brittle and closed off and sour. In the last couple of days we have singing, hugs, silly messages etc. What a difference each kg makes.

Do you need to start another thread? I just start to 'get to know' someone and their particular struggles and circumstance and find it easier to keep track of the whole story if it's on the same thread. Just my opinion though.
All the very best to you, please keep posting and let us know what's happening.
x


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17 yr old daughter dx RAN Jan 16, but starting restricting some months before that. Let go too early and now back home gaining weight again, slowly challenging fear foods and entrenched 'healthy, pure' eating habits and behaviours.
tina72

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Reply with quote  #60 
Freedomfighter, I also would appreciate when you keep this post going if you do not have a totally other question that would be easier to find for everyone. It is easier to scrol back and remember informations that way.

Wheresmywand, hey!!!
"In the last couple of days we have singing, hugs, silly messages etc. What a difference each kg makes."
Yes!!! I am sooo glad to hear from that progress. I remember so well the first day I heard the guitar music again in my d´s room...
You rock it! [wave]

Tina72
wheresmywand

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Reply with quote  #61 
Quote:
Wheresmywand, hey!!!
"In the last couple of days we have singing, hugs, silly messages etc. What a difference each kg makes."
Yes!!! I am sooo glad to hear from that progress. I remember so well the first day I heard the guitar music again in my d´s room...


Hey tina [wave]xx
Just practising my quoting again. lets see...
and thanks ..

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17 yr old daughter dx RAN Jan 16, but starting restricting some months before that. Let go too early and now back home gaining weight again, slowly challenging fear foods and entrenched 'healthy, pure' eating habits and behaviours.
tina72

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Reply with quote  #62 
Hi freedomfighter,
how are you doing? I did not read any updates from you...are you o.k.?
Tina72
freedomfighter

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Reply with quote  #63 
Thanks for asking... have been meaning to post for a while but my thoughts and feelings are so jumbled that I hardly know where to start...

7 weeks down and still going.  Easter day was hard (should have foreseen this but I fantasized it would be wonderful! - we had parents-in-law and brothers-in-law over for Easter dinner so that obviously made her anxious).  The anorexia was very strong.  She wasn't very present with us and escaped to her room as soon as she could.  She ate what she had to eat.  Still am glad we had the visitors - sometimes I am enraged by the effect the ED is having on the whole family and it felt important to stand against this.

Have decided (after extensive vetting) to go with our CAMHS therapist C, and D is seeing him (on her own) next Tuesday.  I know many people have said that therapists/counsellors have not had a beneficial effect for their children.  But D has struggled for a long time with perfectionism and stress around grades and hating her body (pre-AN)...and also is a very self-contained person, not accustomed to making herself vulnerable.  If she were to open up to a counsellor I think it could really really help her. So here's hoping.

She is still hostile and says she hates us and that we have ruined her life.  Because of her age though (17) I do feel that we need to find a way of empowering her to 'buy in' to the re-feeding in some way.  Occupation always breeds resistance and I almost feel that we are preventing her from buying in to what is happening by our insistence of being in control of her food choices.  On some level it feels counter-productive.  If we had a team of professionals around us supporting what we are doing it would be a very different dynamic.  As it is, D often says to us 'you are accountable to no-one! You are just doing what you like with me and no-one can stop you!'.

On one hand we remind ourselves: well, we are only requiring her to eat 3 meals a day.  On the other hand, we are only managing around 2000 calories a day, enough to maintain her weight but not enough to help her to gain weight.  Spent a long time with a nutritionist last week.  She was great in many ways.  She agreed that in a perfect world D should be around 9 kg heavier but that she couldn't support us re-feeding her to that point because in her experience this is sometimes counter-productive and the child will just revert as soon as they have the chance.  I spoke about the evidence for full weight restoration being the best foundation for a strong recovery etc and she said in a perfect world she would agree but in the real world it's not necessarily the best thing to insist on.  I left feeing conflicted and confused and helpless.  If D was younger it would be different but she's not.  

So...to sum up (hopefully): we are very happy that she is now eating 3 meals a day and we are totally committed to maintaining this strict rythm (though there are compromises, for example she works in a cafe and eats her lunch there, I ask her to send me a photo of her lunch which she angrily does.  This is risky, but it is only one day a week and it feels worth it.  In the same vein, she has debating society during lunch-time at college on a Thursday, so on those days I give her a pack lunch instead of going to the college car park.  Again, we choose to take this risk because it feels worth it.  If she is really eating her lunch that is wonderful.  If she is not, it is lifting her head a bit and reminding her of life outside anorexia which I think is very valuable and life-giving for her in her angry, narrow world at the moment.  Have agonised over this and this is where we have come to.  But still strict about the other meals).

Maybe the counselling starting next week will help her to participate at last in her own recovery.  Maybe it won't in which case we will just have to allow time to pass and meals to continue to be eaten, sneaking the maximum calories in that we possibly can.  I remind myself: people recover from anorexia is all sorts of ways.  Food is crucial and that's where we are trying to play our part.  But without professional support we are just frankly unable to get her weight as high as we would like.

My anti-depressants have kicked in and I am feeling more normal.  I go back to work next week (have been signed off with stress since mid-February).   Big decisions for us in the summer as a family.  I was due to be ordained in June.  Unclear as to the way ahead.  It's all rather miserable in a way!  But I no longer have a racing heart at every meal, and I am not physically frightened in the same way.   NOTHING can be as miserable as watching your daughter starve herself and disconnect herself from life! so we are grateful to be in a different zone now, even though she hates us and won't even be in the same room as us for a minute longer than she has to be... sigh.  It's more than worth it though, to have gotten her on a foundation of nutrition on a daily basis.

Hope all that makes some kind of sense, thanks for your care. x






sk8r31

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Reply with quote  #64 
Hi FF,

Thanks for your update...lots of positives, though of course, still some struggles.  Our d was 17 and had been ill for 3 years before we were able to be very successful with refeeding and moving towards strong recovery, so I can totally empathize with the place you & family are in now.  You have a young adult, which means tweaking as best you can to get some buy-in.

Sounds very good about the expanding social connections.  And I did want to mention that we found it very helpful to have individual counseling at the same time as FBT.  We had to travel 90 min each way for good providers, and so it meant having both appointments on the same day.  They were epically long days...and challenging car rides.  However, the individual counselor gave our d some good tools to deal with her anxiety, and that ultimately helped with refeeding.  I think it might not be so effective with a younger kid...but you never know.  With your d being 17, it may very well be helpful in the overall scheme of things.

And we also had a torrent of 'I hate you' and 'you've ruined my life'....but those did stop eventually.  We were back to our loving relationship not that long after WR.  But oh so hurtful in the meantime.  So hang in there....

Another observation from our own experience.  We wanted to offer d choices with foods/meals, and in the early stages were discouraged from doing so by the professionals.  They said that having choices just fueled d's anxiety, and made it harder.  When we removed choices at the beginning, it really did help.  Then slowly offering choices between 2 snack items, and working up to more choice in terms of meals...but I would say this took a few months.

Sending warm support as you navigate through the challenges ahead.  Hope that you encounter more and more smooth sailing, rather than swells.



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Torie

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Reply with quote  #65 
Quote:
Originally Posted by freedomfighter
 Spent a long time with a nutritionist last week.  She was great in many ways.  She agreed that in a perfect world D should be around 9 kg heavier but that she couldn't support us re-feeding her to that point because in her experience this is sometimes counter-productive and the child will just revert as soon as they have the chance.   


In her experience...

In my experience reading pretty much every post on this forum for the past 4 years, the chances of recovery are much MUCH better if someone steps in to require proper weight restoration.  Is relapse a possibility?  Yep.  But without proper weight restoration there can be no relapse because, well, there is no recovery to relapse from,

Your d just turned 17.  She is correct that you have a lot of parental authority right now (reference to her previous comment to the effect that there is no one to stop you from doing whatever you want).  The problem with a wait-and-see approach is that your parental authority is fading fast, and you will never again have a better chance to drag her back to health than you do right now.  And the longer she remains underweight, the tougher the recovery.

I'm so sorry you don't have professional support for the very difficult job of refeeding.  Although that makes it harder, it doesn't make it less essential.  If you know in your heart that she needs to regain that 9 kg, I'm guessing you also know she won't be able to do that without you being the one to slay the beast.   It's a horrible battle, yes indeed.  And long and tough and soul-damaging.  THat's why your d can't do it without you.

Sending strength and hugs xx

-Torie

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tina72

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Reply with quote  #66 
Hi freedomfighter,
great that you came here for an update, I really thought a lot at you.

"But D has struggled for a long time with perfectionism and stress around grades and hating her body (pre-AN)...and also is a very self-contained person, not accustomed to making herself vulnerable."

I today think that is an AN speciality and most AN kids think this way. May d was/is perfectionistic and stressed upon grades her whole life, but I experience a change with that in the last months. We saw her NOT DOING HER HOMEWORK, or saying "that is enough, I will do the rest in the break tomorrow morning" or "I don´t care any more about my grade in XY, I only think about finishing school and do something else in the moment". Never heard these words before.

"Spent a long time with a nutritionist last week.  She was great in many ways.  She agreed that in a perfect world D should be around 9 kg heavier but that she couldn't support us re-feeding her to that point because in her experience this is sometimes counter-productive and the child will just revert as soon as they have the chance.  I spoke about the evidence for full weight restoration being the best foundation for a strong recovery etc and she said in a perfect world she would agree but in the real world it's not necessarily the best thing to insist on.  I left feeing conflicted and confused and helpless."

My experience and that of most AN parents here is totally different. Do you know with how many AN patients this nutritionist worked already? I cannot believe that she said that to you. There is no real world if you have AN. There is only AN world.
In real world she will not get rid of AN until she is fully WR. She will live in a malnutrishened state and relapse immediately if you let her choose what to eat. That is the reality of AN. 4 months after WR my d felt herself that she was feeling better, that her grades were better again, that she could live a normal teenager life again. Now one year after IP she would do everything to avoid a relapse herself because she will never ever get back to that point. She is still perfectionistic and I think she does not really love her body but most of the days she can live a normal life and does not even think about ED.
So what is the real world for that nutritionist? To stay sick because she does not want to help you? To stay underweight because she let the disease win?

Your time is running. If you do want to have her in the boat at 18 she must be better until then. And her brain can only recover with weight gain and fat and glucose to work well. Compared it to a drug addiction. You would not let her choose to take drugs because she is almost adult, would you? Or if she had cancer: you would not let her choose to avoid chemotherapy, would you? Food is her medicine. You do not ask something unnormal or unbearable. You just ask her to keep herself in a healthy state. Or to get there in your case. To eat enough to keep herself healthy will be the "square one" for the rest of her life. If that doesn´t work, she will have one relapse after the other until her body will say no. To eat enough is the basis. No university, no job, no kids without that. No normal life.

The real world the nutritionist is planning is to stay anorexic her whole life. And the outcome is much more worse if you are sick for more than 3 years. After 10 years AN I think you will have lost that game in "real life". I really think this nutritionist has NO experience with FBT and with AN. She should know that WR is the basis for recovery and that this is common standard in science.

That is so similiar to what we heard here in Germany last year. "Your d cannot go back to school. She has to live with that disease. One time AN forever AN. You need to find a place in an adult psychiatric ward for her when she is 18. You cannot help her at that age. She has to turn the switch on her own."

No. Nothing of that happened. She is back in school, she is doing well, AN behaviour is nearly eliminated, she is living a normal teenager/young adult life and I wish you could see her. The proof of FBT is walking around in our house. Is driving her own car and doing grocery for me. Is buying ful fat products and eating them. Is the same girl we knew before AN. I did not believe it in early days, too. But it works. Keep swimming. Keep adding calories. Try to make her gain some weight. Did you try Benecalorie by the way?

All this "I hate you", "you ruined my life" etc. stopped on our way to WR at one time, I cannot even say now when it exactly was because we saw it weeks later I must say. There was one evening when I realized that she did not say something like that for a long time. Today we hear "I love you", "you saved my life", "I am so glad to be born into this family". And my d was at the same age than yours when dx.
I would wish you keep swimming until you could hear that again, too. It is worth all battles.

Great that you are feeling better with the meds, take them as long as you need them, that is nothing you need to stand alone.
I hope you come back soon and keep us updated.

Tina72
Torie

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Reply with quote  #67 
FreedomFighter, I hope my post wasn't too strong or offensive in some way.  I really believe that the parents need to call the shots, and if you disagree with my suggestions, that doesn't mean I can't still be here to offer you sympathy and support.  I do think it's important to hear the arguments in favor of actively refeeding, especially since you are hearing the arguments on the other side.  Then you can make an informed decision.

I have been thinking about you and your d a lot, and I hope things are going okay. xx

-Torie

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

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Reply with quote  #68 
Thanks all for your responses, and thanks Torie for your second email too.  Your first email was strong but not offensive.  This forum is full of strong consistent voices from those who have been through it and are emerging (or emerged) out the other side.  Respect to all of you!  If it wasn't for this forum we would still be watching our D spiral deeper and deeper into anorexia.  Now at least it feels like she is in the foothills of recovery and every day she is eating 3 meals - a massive improvement.

I am infuriated that we have not managed to find professionals who will support us and give consistent messages to D.  Without that just cannot get her to eat 3 snacks too.  But we are committed to the daily 3 good meals.  Allowing time to pass.  Hoping she will find the therapy helpful and defusing.  Hanging in there.  Hoping the hate will dissipate.  The other day, I made her laugh, for about 3 seconds (despite herself).  A great moment!  Then this morning I kissed her head when I woke her and she accepted it.  Another good moment.

I am away on residential training for 2 days right now, H is holding the fort at home, with eldest son home from Uni for moral support.  It is incredible that we felt it was ok for me to come away!  Am wondering of course how the meal is going right now, but the fact that I am even here means that the dust is settling and maybe we can find a way of continuing our lives while still supporting and containing her.  Returning to work next week (have been signed off since mid-Feb, not what I expected would need to happen at all).  Trying to find the balance between accepting that ED is dangerous and serious and needs all resources available to fight it, and guarding against all life and energy and opportunity and relationship being sucked into its orbit.

Thank you, heroic sisters! (and brothers too)

scaredmom

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Reply with quote  #69 
Hi freedomfighter,
I am glad the fight is a bit better and she is eating 3 meals. Hopefully, with time you can increase that too.I am glad you have a break from ED for a couple of days. Please enjoy it, relax, sleep and rejuvenate. 
You said "The other day, I made her laugh, for about 3 seconds (despite herself).  A great moment!  Then this morning I kissed her head when I woke her and she accepted it.  Another good moment."

This is gold star moment!!! When my D let me hug and kiss her in the midst of re-feeding, it was the best moment ever. I have tears thinking about that now and for you to have such a lovely moment with her. 
That is great!
XXX
tina72

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Reply with quote  #70 
Hi freedomfighter,
congratulations for these gold star moments!
I am glad that you have some time off now and can hopefully relax a bit. Hubby and brother will manage that!

I hope you don´t mind my direct words, too. I just think now I should have had someone speaking directly to me one year ago (or better 2 years before!). We have lost so much precious time and I just want to help others not to make the same mistake.

"I am infuriated that we have not managed to find professionals who will support us and give consistent messages to D."
What helped here (and we did not have much support with meals, too) was to tell her that we read a lot of scientific books about AN and that we talked to a lot of experts and that we are experts now, too. She did not believe it, first, but then after some weeks she saw the progress herself and now she believes it.

"Without that just cannot get her to eat 3 snacks too."
I just want to explain why these 2 or 3 snacks are so important. It is not only to add more calories to the plan.
The problem with AN is that many patients need to have constant blood sugar level to feel better. If my d did not eat every 4-5 hours she would have a shut down immediately, even today 7 months after WR. Can you maybe tell her that it is important to eat something every 4-5 hours to make her feel better and that you can subtract that additional snacks from the 3 meals (you surely will NOT do that in reality, just fake it)?

Please don´t mind if we use strong words and direct sentences. It does not help to talk about the bush. It is intended directly by heart.
Send you a big hug and have some fun!
Tina72
Mamaroo

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Reply with quote  #71 
Hi, I can only agree what the others have said. It is a pity that the nutritionist is not prepared to push for full recovery. Do you really need her? It might be more helpful to find another therapist/dr who could push your d into have more food.

I've attached the Kartini meal plan. It only has 4 meals a day and might be more suitable for your situation. It might be easier for you to increase her meals from 3 to 4, although what Tina said was correct, they need food every 3-4 hours for their blood sugar level.

Sending you lots of hugs!

 
Attached Files
pdf Kartini__Home_meal_plan_3-1-.pdf (54.06 KB, 27 views)


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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.

hopefulmama

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Reply with quote  #72 
Quote:
What would make a massive difference to her would be a good therapist/counsellor.  Have CAMHS appointment today but reluctantly we are not bringing D as we still feel very unsafe with her therapist.  Because she is now officially not 'underweight' he feels that the weight is no longer an issue at all.  I strongly feel she should probably be up towards the top of the 'healthy weight range' (historically she has always been 75-85 centile).  He says things that suggest that he kind of feels that re-feeding is no longer appropriate at this stage.  He says things like: some girls with this body-shape ARE waif-like and some parents have a problem with this.  NO!!!  I don't have a problem with D's body shape, I have a problem with her being ill.  Have had two long telephone conversations with him trying to get on the same page but haven't managed it.  It would take D 2 minutes to uncover his thinking around all this and it would pit us against each other and make her resistant to putting on any more weight and we just can't risk this.  H and I are going today to see him alone (he is expecting us to be with D).


I am so sorry you are having to deal with this on top of everything else.  I have often heard that no professional help is better than bad professional help. Truer words have never been spoken.  You are 110% right about the weight.  Continue to ignore CAMHS.  Like so many professionals the therapist sounds afraid of what ED is afraid of. My daughter was diagnosed at 17 and had always tracked at 75th percentile.  We got her back to about 50th percentile and professionals told us we were done.  The ED was still so strong, but they said that was the best we could hope for.  Anorexia would be something she would "manage" her whole life. Thankfully, I found this forum and learned differently.  It was terrible getting another 15 lbs on my daughter at 18 to get back to that 75th percentile.  Despite the success stories I had learned on this forum, I had my doubts.  How could gaining more weight make her better when gaining back to 50th percentile had made her clinically depressed, brought on panic attacks and self harm and suicidality? It made no sense.  The therapist and dietitian told her she was 18 and had to to this herself and that she didn't need to weigh as much as I said and that I was too controlling.  Huh? Where was the evidence in any of this?  We got rid of them and guess what?  My d is now 23, still on 75th percentile and is happy and healthy and ED free. It really is malpractice and these "professionals" should be held accountable for the damage they do.

You are right and they are wrong!  Keep pushing and coming back here for support.  Use every bit of financial leverage you have.  We didn't let out daughter start university on time. Thankfully, she was dependent on us.  She HATED us for it and for everything else. In the end though, we decided we would rather she be healthy and hate us than the alternative. Today we have a wonderful relationship and she credits us for saving her. On my birthday last year, she texted me and said, "Mom - many kids say they would be nowhere without their parents.  In my case it couldn't be more true."

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Enjoying my 23 year-old daughter's achievement of active recovery that was made possible by the resources and education I found on this forum.

Don't give up hope!
freedomfighter

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Reply with quote  #73 
Thank you hopefulmama for this wonderful testimony - so encouraging.  Thanks too to everyone for yours experiences, suggestions etc.  We are not giving up and full weight restoration is the goal.

In the meantime though it's all a bit discouraging.  D only put on a kg in the past month.  And her behaviour has reverted to how it was at first - swearing spitting roaring screaming being destructive.  I was hoping it might be extinction burst so was very disappointed!  Not QUITE as extreme as the first month (because if she is destructive we take her laptop), but really demonic.  She is so tortured by the ED.  Have not been able to connect with her AT ALL for ages, about 10 days I think.

However the good thing is that I have now gone back to work and I am coping with being there and still managing the food around that, so that's good.  Also, am not scared of the violence etc like I was.  Don't know if it's the anti-depressants or just that my resilience is grown but my heart doesn't even beat fast any more.  It makes me so sad and wretched though, and I fear for her.

Right now awaiting a written statement from CAMHS about the way forward.  I am going to challenge this (unless it includes full weight restoration, which it won't) and kick up a fuss, send some evidence about the importance of full weight restoration to the brain etc and ask why they are going against this? ask for us to be transferred to where they are following NICE guidelines, or try to go private to a Maudesly consultant (will need to sell the car or something!), just pushing all doors.  I have a very assertive and articulate friend who is helping me to fight our corner.  My daughter is an extremely strong character.  She NEEDS to be told by someone else, someone with authority, about the weight she needs to put on, in order for us to be able to hold her in this.  Am frightened she is going to start purging as she is full of desperation.  We need professional support.  I know some of you have managed without this but I just don't believe it would work for us. 

So...not great here, and we could do with some encouraging developments from somewhere.  But we are so not giving up.  There isn't even a choice about this.  We need to pull her out of the pit.

Greetings to all. x

Torie

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Reply with quote  #74 
So glad to hear from you, freedomfighter!  I was just going to ask how you were managing as I have been thinking of you and your d.

Quote:
Originally Posted by freedomfighter
D only put on a kg in the past month. 


Quote:
Originally Posted by freedomfighter
We need professional support.  I know some of you have managed without this but I just don't believe it would work for us. 


You can only do what you can do; no one here stands in judgement when ED is too strong for the family to conquer alone.  We all know that's always a real possibility.

BUT ...

I'm a little worried you are selling yourself short.  One kg in a month is a great start.  A great base to build on.  I have a hunch that you CAN do this.  You know what we say: "When you're getting flak, you're over the target," so it is not all bad that ED is kicking up a fuss.  

And I'm delighted to hear you have a friend to help you advocate for your d.  I am beyond sad knowing that you need to call in reinforcements to get your d the professional help she needs and deserves.  

Please let us know if there's anything at all we can do to help. 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  #75 
Yes, I think that is a great start, too. We needed more than a month for the first kg!
I can really understand why you desperately seek for an authority to help, but what if you do not find one?
What if the authorities tell you, like in our case, that you cannot do refeeding at home, and it is simply not true (we did it better than IP and the outcome is long-lasting)?
Try to have a little trust in your competence. You know what she needs to eat, you knew it all her life before. You are able to cook and to serve a plate [wink]
If you find professional support, that will be great, but please do not mind if you don´t find good professionals. You can really do that. Let it be your plan B at last.

Torie is right when she says that you are selling yourself short.
Can you think about introducing at least 1 extra snack? Her mood could possibly be much better if she did not have those blood sugar ups and downs the whole day. It is worth a try.
Keep swimming! You need to go through that tunnel to see the light at the end and no professional ever will go with you 24/7. You have to fight that alone in the end and I am very sure you CAN DO THAT!
Tina72
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