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keepsmiling

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Reply with quote  #176 
Well, D managed the whole week eating everything they threw at her and I am sooo proud of her right now.  It has been a huge challenge and certainly hasn't been easy for her but she seems determined to do what she is told.  Family meal, where I and the other families take dinner in to eat with the children, was extremely challenging for her and she ended up needing to be taken out to eat separately this week, but she returned for her pudding with us.  There has been a big shift in her meal plan and her rules around timings, checking amounts etc increased for a few days until they told her she had to do what I told her and to trust me - she admits that she doesn't trust me but has reduced the behaviours of checking, which is a start.  

There are LOTS of therapy sessions each week (alongside daily education sessions where she works on her A level work) which I am hoping will help her too, but at the moment she doesn't want to talk to me about anything she does or eats there, just tells me she doesn't want to talk about it.  I completely understand that she doesn't want to talk about it so get my information from the therapists at my weekly meeting and from other families at family group.  

I know that we will still have a very long way to go after ITP so have spent the week relaxing and doing nothing apart from walking in parks, sitting in the sunshine reading and sometimes just sitting.  My energy levels are at zero at the moment so I am making sure I recharge ready for after ITP - to be honest, I'm not sure I could find the energy to do anything else anyway!

Thanks to all of you for your support, it means so much.
Kali

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Reply with quote  #177 
Keepsmiling,

This is such wonderful news. It sounds a lot like the place my d. was 1.5 years ago when we finally found effective treatment for her. She also had a change of attitude, like your d. seems to be experiencing. She started trying to eat and trying to listen to the therapists, even though it was very very difficult for her and certainly there was ambivalence at times during treatment. She also had a lot of therapy sessions and support. She also did not want to talk to me about much of it in the beginning. 

These are some of the things we did:
Kept her in effective treatment for a long time. My d. was in higher levels of care for 6 months, including 3 months residential, 1 month php (day program 5 days a week) 6 weeks IOP (day program 3 days a week) before stepping down to a team consisting of a psych., therapist, and nutritionist and MD and family support with very structured mealtimes at home.
 
She was weight restored and stayed in those higher levels of treatment for 3 months after that.
When she came home again I was very vigilant because there was some backsliding each time she had less supervision. I remember when a therapist told me that could happen my heart really sank at first but was true in her case, and that is where I was able to use the things I had learned here on ATDT to help her. 

Know that right around the time of weight restoration a sufferer can become very emotionally dysregulated (my d. was) and that having a good team and strong family support if that happens to your d. will get her through it. My d. self-harmed at that point. The team was able to address the self-harm with her and made that the focus for awhile and I think it really helped her.

With the weight restoration came a strong depression as she started to realize what had happened to her and how her life was not what she wanted. And she hated being "fat". A low dose of an SSRI plus the start of us at home trying to ease her back into a life she wanted to create and live (very slowly) helped with those feelings. Also continued food support and structured and supervised meals at home helped with this.

Does the program provide family therapy as well? The program d. was in had a family session once a week and here I am not talking about FBT, I'm talking about family therapy which was focused on talking about how to help d. and how to move forward after her discharge. There was no family blame but we did get to discuss some of the difficult things which had happened to d. and to our family. I found these sessions invaluable since d. opened up a little and we were able to get a more realistic idea about what had really happened to her while she was very busy pretending to us that everything was fine. And we were able to understand more about what she needed from us in order to be successful in supporting her.

The program also believed in a strong discharge plan. They had d. participate in choosing a team and essentially taught her how to put together help for herself. (she was 18 at the time)

Fast forward 13 months after leaving more intensive treatment (although d. has had an outpatient team this entire time and certainly there were some blips along the way)
 
She is back at university, has been able to go on a trip to another country, is engaged in her studies and with her friends, and has somehow understood that in order to have the life she wants to have, that she WILL need to EAT. Are things perfect? No, but they are much much better. There are still foods she will not eat. She is still frightened of becoming "fat". I still hear some "ED chatter" sometimes, especially when we first sit down to a meal. It is not a miraculous cure but rather a slow and steady improvement. But she weighs enough and feeds herself and I am vigilant and see her often.

I hope that in 13 months you will be here on ATDT writing about how much better your d. is doing also! You are doing all the right things to get to that place and to help your d.

Best wishes, 

Kali




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toothfairy

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Reply with quote  #178 
Keeepsmiling that is just great news, onwards and upwards.
Kali, lovely post..... I hope so too!
Best wishes

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
mjkz

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Reply with quote  #179 
That is so great to hear.  May the next coming weeks go by like the last.  My daughter didn't want to talk much either and never wanted to celebrate what I saw as successes.  She felt like they were failures so I'd tell her how proud I was of her being so brave and leave it at that.
keepsmiling

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Reply with quote  #180 
Kali, the program you describe sounds almost exactly what we are currently doing.  D goes there 5 days a week with lots of food challenges thrown at her, mixed-up meal timings and the expectation she will eat everything - which she does.  There is a time limit for eating, 20 mins for main course and 10 mins for pudding.  D goes to education each morning and has different therapies each afternoon.  They are also going to be gong out on trips, including to restaurants.  Next week she, I and one of the team are going out for lunch together and we have been told we will need to repeat that the following weekend.  I get to have an hour session with her and two of the team each week working on different aspects of the ED, our relationship etc, plus I get to meet with the other parents for an hour each week where we all share how things are going and tips or advice, then we all eat a meal with the patients.  
D will have this for five weeks then step down to four weeks of three days a week.  In August we will have a joint phone conference with the ED team locally to sort out her care here for when the program finishes, including D being able to say what she thinks will help her and who might best meet those needs.  
I think D has had that change of mindset that was needed to work towards recovery which fills us with hope.  Thanks for the warning about nearing WR - D is still over 10 kilos away from that but is gaining quite quickly so it's good to be aware that it may cause big problems.
Today D visited her new school for September and seemed to get on well, coming out smiling and having exchanged numbers with another girl - a huge change from the anxiety she showed when trying to return to school last year.  Again, she has had therapy to help her deal with this at the program and it has obviously helped.  Tomorrow we are visiting a University; she won't apply for another year and a bit but wants to look now, which we are encouraging as it is again giving her something to fight for.  Meals and snacks haven't been easy to sort out but we have managed to agree what she has to have during the day and the calories are correct, something she wanted to make sure of.
I know there are going to be ups and downs but at the moment things are going well and, like last week, I couldn't be more proud of her.
Kali - in 18 months time I truly hope you are right and I am posting here a story of hope like yours [smile]
martican

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Reply with quote  #181 
So glad to hear that TF! I am curious, this program, do you have to be there as well to support her through the meals, or will she there all by herself those 5 days?
NELLY_UK

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Reply with quote  #182 
This was what my d was offered but she would not give up her job for anything. Work has been her structure, goal, reason to be. Having failed all exams through previous treatment happening during year 10, she said no. How i wish we had been offered this earlier in the illness, not 5 years in.
Its great to hear about the progress, well done you!

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
keepsmiling

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Reply with quote  #183 
Hi Martician, most of the time she is there with the therapists, nurses and other girls, very much like being an IP.  However, I am expected to be there for our family therapy for an hour a week, family group and family meal for two and a half hours a week.  Twice a week she has dinner there (once as part of family meal with all families) but the other days she has dinner at home with me.  There is an expectation that I notify them if she refuses anything she should have at home and they will then replace it with 1.5x calorific value the following day using a supplement drink.  
Nelly-UK I must admit it is only through this forum that I discovered the program and had to push very hard to get D referred to them but I am sooo glad I did.  She turns 18 in September so our time was very limited to get her help before she moves to adult services but I would recommend to everyone to fight hard for whatever your child needs, don't let incompetent care stop your child from getting the help they deserve.  I am so sorry your D didn't get the help she needed but hope she's doing better now.
toothfairy

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Reply with quote  #184 
Keepsmiling - you Rock, So happy for you
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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
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