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melstevUK

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Reply with quote  #151 
Hi HateED.

Certainly you have nothing to lose by trying the UCSD programme and many people have found it incredibly helpful.

I suppose for me what resonates is here is a young person with an ed, depression, BPD symptoms, deep unhappiness with the way things are but with no way of moving forward.  It seems that not only does she need support with her feelings and behaviours but with future plans, even if it is with a short term goal like a trip somewhere that she would love to visit and which it is worth getting well for.  There seems to be a kind of hopelessness in her that doesn't need to be there and it makes me very sad.  Who is giving her the loud and clear message that things will improve, even if not as quickly as she would like?  

While I recognise that DBT can be hugely successful in helping people become less impulsive, act less on feelings and sit through the unpleasantness of feelings - I also believe that it is difficult to pursue recovery for its own sake without any other goals being involved.  Dreams of a better life and of doing pleasant things have to feature - the depression, even with meds, is unlikely to subside without life beginning to appear more attractive.  Is anyone helping her on this level?  Would a family trip motivate her?  A kitten?  I certainly would not want her back at home unless she is prepared to make an effort and do some ordinary things like going to the cinema, even if she were to do a PHP at home.  As I remember she was lying around all day the last time she was at home and you don't want to go back to that.

This is not meant as criticism by any means - I am just exploring options and looking for ways to try and break the cycle. Trying to understand the difference between being 'high', being happy and being well can be difficult for young people because they often equate getting high with being happy, failing to understand that it will always be followed by a big crash in the opposite direction.  Neither can they appreciate the difference between wellness and happiness - everyone around her wants her to be well whereas she is wanting happiness, probably.  

I hope she can be persuaded to stay in residential a bit longer.  Maybe try a week extra at a time.  



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Kali

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Reply with quote  #152 

Hi,

I so agree with melstevUK when she says:

Quote:
It seems that not only does she need support with her feelings and behaviours but with future plans, even if it is with a short term goal like a trip somewhere that she would love to visit and which it is worth getting well for.  


Motivation in the form of future plans and dreams and hopes was really invaluable to us to help move our d. ahead. I allowed her to take a really exciting trip to Europe with her friends when she had been out of a higher level of care for only 2 months. Although she lost weight on the trip and I had to spend time refeeding at home with the accompanying difficulties afterwards, she also saw that:

1. she had worked and saved up her own money and paid for half of her trip and felt as though she had accomplished something.
2. there was a wider world out there with many exciting things to experience when she was truly well enough to do so.
3. she made plans as part of a group: She and her 3 friends found places to stay and decided where they wanted to visit together and socially she really had a wonderful time. 
4. She realized that she was not yet fully ready to be able to return to college that fall because she had not been able to maintain her weight on her trip (that was a condition we had set for her return to school; she took more time off and was able to stay home and take a few college classes and commute to school for the next semester while I helped her get her eating and weight back on track) So the trip was kind of a test. 

It made her feel successful and happy to be able to have an adventure like that after going through months of treatment and being seriously depressed for so long. Weight wise I probably should have had her remain home but I don't regret it and just stepped up to the plate when she returned and we helped her with her eating. And I'm not saying that it would be right for anyone else to try this but in our case it was a motivator.

What did you daughter want to do before she became ill? If she had not been ill what would she have been doing this year? How can you support her in realizing her hopes and dreams and help keep her safe at the same time? 

Kali



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mjkz

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Reply with quote  #153 
HateED what about the Ohio program?  If my daughter were to relapse, that's where we would go because the program is geared towards YA or adults who suffer rather than younger kids with families.  The people that I have talked to about the program there (sufferers who have gone through) found it very helpful because there more of a focus on what the sufferer can do for him/herself rather than what the family can to do help and keep the sufferer healthy.  The focus shift seems to be in helping the adult sufferer identify his/her goals, how to best use the support provided by everyone-not just family but friends too and work around how to mobilize his/her own internal strengths to reach those goals.

I have done a lot of this with great therapists and my daughter too.  UCSD at this point for us would not be helpful because of how old my daughter is and the fact that she has to be able to rely on herself more and more as she gets older.  That's not to say I don't provide a lot of support but the focus is now on her, what she can do and what use all her supports can be rather than just family. 

I think Mel has pointed out a key differentiator in how to deal with YA that those who still have kids don't necessarily had to take into consideration-her own image for her future and how to identify what that is/how to get there/etc. 

I may be not saying this well but for my daughter things never worked when all we concentrated on was getting healthy.  She failed again and again and it really wasn't until she was able to build in things to get healthy for that she started to succeed.  My daughter needed to build the life in some respects and then get healthy for it.  Kali's story of allowing her daughter to go on the trip is a perfect example of this.  Inpatient was the kiss of death for my daughter because all she had was time to sit and think, ruminate, etc.  Once I got her home and forced her to go out and volunteer, etc. she found things that she loved and started keeping herself healthy in order to keep doing those.  Also the thought of losing what she loved was a very powerful motivator to keep her moving in the right direction. 

She did have to lose the things several times until she figured out how to make things work. It took a ton of work on all of our parts but she is succeeding.  I don't know if you can have her do treatment and also require that she volunteer someplace so she can't lay around home and be depressed.  My daughter did the humane society for awhile and hated it.  She moved to a couple of different places before she discovered her love of birds. It was while caring for birds that she really started to experience the difference she could make in the birds' overall health and slowly it sank in that hey she could make that difference in her own health too!!
sk8r31

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Reply with quote  #154 
The UCSD 5 Day program worked so well for our family with our then 17-year-old d.  She had been ill for 3 years, and we'd had suboptimal care from providers not up-to-date with the best evidence-based care.

The Center for Balanced Living in Ohio gets great reviews from parents/carers/spouses with those 18-35.  

I'd recommend checking out both options, and speaking with intake specialists to see if either one would be a good fit for your d and your family.

Sending warm support,
sk8r31

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HateEDwithApassion

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Reply with quote  #155 

mjkz -
Thanks for such a thoughtful response. I was just watching a Ted Talk by Dr. Laura Hill today and at the end she choked up and talked about how the patients she works with are all on stage with her as she presents this info. It made me realize the passion she has for the development of that program.

I will look more closely into the Columbus version. Our local dietician (who I've really liked so far) and a new-ish ED therapist both thought the 5-day programs are a waste of money. I have to admit - I'm kind of pissed and wondering if we stick with them. Yet, they are the best in a mess of not great providers in the area, so it's quite frustrating. I told the ED therapist this week that I want to do the 5-day program when my D returns whether or not they agree becuase nothing else we have done has worked and this program gets stellar reviews from families who actually have recovered kids. Um - who should I believe? The therapists who haven't figured out a way to get her well or a program where families say it has helped. No brainer.

She has identified wanting to start a job and volunteering when she gets home, so I think you are also right there.

Kali - I honestly have no idea what she wanted to do before this illness or relapse. She has been so depressed for so long, that's she not been forward thinking. she talks about going to school out in Denver and living out there. She wanted to go to Greece and do a workaway job there with plants and animals, but as soon as she booked the airline ticket (we thought same thing - go and see the world and see there's much to live for) she panicked and backed out.

She's expressed wanting a buy a car from my dad (which he dangled in front of her if she finished therapy and was working on recovery. That has excited her) She's also talked about trying to earn her money back spent on this stay (she paid for half the out of pocket cost, but I said down the road we might reimburse depending on the effort and completion/compliance. Those items seem to motivate her too.

Sk8r31 - thanks for sharing. Seems like the CBL program might be a better fit - and it is closer. I thought the UCSD one might seem more appealing to my D - and to my whole family actually - because it's in a place we've never gone that is warm. We live in northern US. [smile] Looking for compliance and motivation however I can get it. They are doing an young adult version in April.

 


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19 yo D. AN - since about 15 years old. WR quickly - but the last four years have been tough. Since Sept. 2017, two residential stays, now in IOP, fighting a relapse. ED is hanging on, mental state not great, can't get her to remain at a weight long enough or high enough to see mental healing. She's on a gap year that will likely now turn into two.
AUSSIEedfamily

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Reply with quote  #156 
Dear HateEDwithApassion,

Show this report to your ED Therapist its the evidence of the success of the program. Eating Disorders Families Australia (EDFA) is in the planning stages of bringing Dr Laura Hill & Dr Stephanie Knazt Peck to Australia to train our local clinicians on the NEW FED TR program.

The CBL program actually has collaboration with USCD and a level of oversight and supervision by Dr Walter Kay. There is a podcast on the New Plates podcast with Laura Hill and the USCD team. http://www.circummensam.com/episode-4-new-fed-tr-at-ucsd-and-cbl.html

There will be new report on the program to be published in the near future


,pdf Outcome data NEW FED TR Oct 28 2016-1.pdf    

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HateEDwithApassion

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Reply with quote  #157 
Thanks! I did send an email to her today with this data! I appreciate it!


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19 yo D. AN - since about 15 years old. WR quickly - but the last four years have been tough. Since Sept. 2017, two residential stays, now in IOP, fighting a relapse. ED is hanging on, mental state not great, can't get her to remain at a weight long enough or high enough to see mental healing. She's on a gap year that will likely now turn into two.
HateEDwithApassion

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Reply with quote  #158 
Thanks all - transitioning to this young adult thing is not for wimps! 😉  Will I see any of you in Chicago at the Feast get together? I'm going!


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19 yo D. AN - since about 15 years old. WR quickly - but the last four years have been tough. Since Sept. 2017, two residential stays, now in IOP, fighting a relapse. ED is hanging on, mental state not great, can't get her to remain at a weight long enough or high enough to see mental healing. She's on a gap year that will likely now turn into two.
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