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

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motherofsixdaughters
Laura Collins posted back in 2009 the following info on a "Maudsleys effectiveness for +18 yr olds" post.

"In the one study that did include older patients, they didn't do as well with Maudsley as they did with CBT. But what isn't talked about much is that the older population doesn't do well in ANY treatment. Patients ill longer than three years are statistically less likely to recover at all."

Can Laura or anyone else comment on if the last part of this statement concerning age and amount of time with the illness statistically still holds true. I'm hoping now that it's 2014 possibly there's new research towards it. My daughter is 18 in a few weeks and has had her illness for a little over three years. I understand on one hand not to let statistics change my mind to fight this bc my d is not a number. I WILL fight no matter what but I also just want to know updated statistics.
Thanks!
18yo D wr about to start phase 2 but at an ed inpatient for suicide

"...surely in the rush of great waters, they shall not reach him.  You are a hiding place for me you preserve me from trouble, you surround me with shouts of deliverance."
Psalms 32: 6-7
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evamusby_UK
I can see how your heart would sink, and you're also there for your daughter - both a fighter and a good statistician.

I am not aware of any new stats for what you ask.
But I'm pretty sure there is a study of FBT in over-18s somewhere.

James Lock (FBT) recently gave a talk in my area and again he referred to the good results with FBT when treatment begins within 3 years, and how after that the results are much less good. He also said that this might, after a while, alter one's aims in treatment. So (I am paraphrasing heavily) for the under 3 years, you keep aiming at total recovery because chances are it's a realistic aim, whereas for the over 3 years, when you hit limitations, you may aim at installing ways of living a good life in spite of symptoms.

Also, just for the benefit of others reading this (and I haven't read the 2009 post) there are, to my knowledge, no studies comparing FBT with CBT. You can't really compare the results of each because, for instance, they use different criteria for what is a successful outcome.

Also, (again for those reading and picking up ideas), we're not talking ordinary CBT, but CBT-E, which is very specific to eating disorders and quite different from CBT.

Wishing you a day of successes.
Eva Musby, mother, author, produces lots of resources for parents at https://anorexiafamily.com and on YouTube https://www.youtube.com/user/EvaMusby/playlists
[comp]
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motherofsixdaughters
Thanks Eva! I will check into studies here in Chicago with UIC that I've seen as we live in ithe suburbs. Can anyone share a success story for me of their child who had an ED for three years before treatment started?? I've checked out the stories of recovery post and most people aren't clear about how long their child was sick before they started treatment.
Thank you!
18yo D wr about to start phase 2 but at an ed inpatient for suicide

"...surely in the rush of great waters, they shall not reach him.  You are a hiding place for me you preserve me from trouble, you surround me with shouts of deliverance."
Psalms 32: 6-7
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sk8r31
My d was 14 at dx, and 17 when we went to the UCSD 5 Day Family Intensive program, and were really able to implement FBT successfully at home.

There were brief periods of stability during the 3 years prior to implementing FBT, but they weren't able to be sustained.

We successfully refed our 17 yo at home over the summer, just after the UCSD program, and she gained 22 lbs which put her within a 'healthy range' for her.  

That was 3 years ago, and she's happy & healthy, beginning her 3rd year of university out-of-state.

Don't let anything deter you from working towards or expecting a full recovery for your d.

Warmly,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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YogurtParfait_US
It is true that recovery is harder when illness is longer. And, sadly, illness can last for years even when the kid is in treatment if it isn't treated promptly and aggressively.

But there are plenty of stories here on kids/young adults with long illness who are doing very well, and are now healthy.

Check out the "stories of hope" thread.

See WenWinning's daughter's story. 

Consider Carrie Arnold's story--it isn't in stories of hope, but she got well after years of ineffective, poor-quality (and very expensive) treatment, including multiple inpatient stays, by being re-fed by her parents when she was in her 20's.

There is MUCH hope.
"Hope is a wonderful thing ... but hope by itself is not enough. Hope is the reason to take action, to make a plan and then to change the plan when it isn’t working - over and over and over again if necessary." Hannah Joseph (Let's Feast Friday Reflection, "Just Keep Going," Friday, March 3rd, 2015)
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hopefulmama
I would add to that the stories of Seminar Lady and I believe Lydia.  Both had YA daughters who exceeded the 3 year mark.  I have a friend on this forum who was worried about that 3 year window as well and had a YA d.  

I would also say that just because there hasn't been a study doesn't mean there isn't hope. 
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!
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GiveMeStrength_US
My D was symptomatic turning 16 and dx at 16.  She was hospitalized and then sent to an in-patient facility around the time she turned 17 (so not 3 years of illness/symptoms although who really knows when the thoughts began!).  When she was discharged, we implemented FBT but on a modified basis.  We did not start FBT with a therapist (although we were doing many FBT-things) until a few months before her 18th birthday.

She is now turning 20.  We re-fed her and stuck with FBT through her 18th birthday, despite threats to move out once she was a legal adult.  She went to college last year on a modified commuting schedule.  She has kept her weight stable, she is eating independently and I would say she is on the continuum toward a recovery which we hope will be a full one, one day.  We continued FBT until last December 2013 when she "graduated" FBT at the age of 19.

But it takes time and patience (and leverage for a young adult to comply).  We have had to pull the financial leverage card many times along the way and we had originally told her we were going to get medical guardianship when she turned 18 due to her threats of non-compliance (but never had to).  I tried to answer your question in a nutshell, but obviously there is much more information behind the scenes here.
Mom to D 21 in November, behaviors started at 15, hospitalized at 16, IP at 17, FBT at almost 18. Finished second year in college; now abroad in treatment program to deal with co-morbids.
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LauraCollins_US
Statistics are not people! 

Just because the statistics on a large group of people point one way or other that doesn't mean anything for a particular person. Each PERSON deserves the best care they can get, personalized to what is best for them, with 100% hope of full recovery.

Statistics should especially NEVER be used to discourage or dishearten. The only use for such stats is to help point toward various options. The stats on FBT for younger patients with less illness is helpful in making sure FBT is tried earlier for more people: not as a cudgel after the fact. The stats on early intervention are to create urgency in getting folks into good care early, nothing else.

If we were talking about cancer, for example, staging the illness is important but we don't do LESS for those with a higher stage, nor do we hit the snooze button for those at a lower one. We do ALL we can wherever we are.

Again, statistics are not people, and I brought that stat up to point out that those who dismiss FBT as less effective are comparing apples and oranges, as the alternatives are not really better.

Plus, there are very few stats on ANY treatment because very few RCT trials are done, or completed, except for FBT because the patients most likely to consistently stay in treatment are minors whose parents are involved!
Laura (Collins) Lyster-Mensh
F.E.A.S.T. Executive Director
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WeNWinning
We were able to refeed my D at age 22 after a decade of failed treatments and clinicians setting her weight too low, which prevented her from quick recovery.

What Lock and LeGrange refer to as well as others, is that the  course of treatment is much longer, the longer someone has been malnourished and ED more entrenched.
And, I think that it is wise for any parent of a child who was ill long-term to consider them in remission  rather than recovered.

This is a relapsing illness and one that will take Y/A and adults to be very dedicated to their recovery, doing what is necessary to remain healthy.
WenWinning (formerly wenlow) - a Mom who has learned patience, determination, empathy, and inner strength to help her young adult daughter gain full remission after over a decade of illness and clinician set inaccurate weights
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joss
We have been at this for one year, which feels like a lifetime and I cannot imagine decades of struggling. Thankyou for the constant encouragement and positivity, today I feel as if I have been run over by a freight train so thankyou for the reminders that there is hope.  
joss, parent of 16 yr old RAN D B/P, 18 months since dx
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Elizabethl
My d turns 23 next month. We have been on this journey for 2 1/2 years. FBT has not been done as Dr wants her to be independent and responsible for herself. It is difficult when they are older, d has to give permission for me to be included in any discussions/decisions. I don't go with her to see dr and I know she does not tell me everything. Her current weight is 30 kg ( remembering she is 23) and yet I feel unable to do a lot about this. Even IP is difficult as she can discharge herself, hard work to get her to stay. So far the longest stay has been 3 weeks.
What I have been able to do is change the way I am talking to her about her Ed. Thanks to ATDT . I have noticed a few small changes in her behaviour. All we can do is keep fighting for our children.
Elizabeth
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doctorp
We do use FBT for young adults all the time.  No studies published but our results in that age group are really nearly as good as with younger kids.  It ends up being slightly more collaborative, and Phase 2 looks a bit different as you are trying to get patients to full independence during that time, but I find it works well.  It does work better if patients live at home with their families during the acute part of Phase 1, but we've had families skype and prepare food and work with their adult children in college/dorm/cafeteria settings as well, so it just depends.  We treat patients through 24 years of age, not older, so I can't speak to how it works with patients older than that but I would imagine it would be no different.  It is frequently hard to find therapists who will support this model for young adults - our therapists only see through 19 years of age, so we have developed some core ties with a few community professionals willing to do this, but that was a challenge initially, and so we were often doing a lot of the work just on the medical/nutrition end and it took a while to get good therapists.

Key to taking on this work, though, is parents being willing to leverage their parental authority against the illness, even if it is upsetting to do so.  That does not always mean financial leverage - do not underestimate the simple power of parents, united, against the disease and how much even young adults care about and listen to their parents.

Eunice Chen, who was a part of championing FBT for young adults, is in the Philadelphia area at Temple and takes on patients in her protocols.  In addition, UCSD has the FBT for young adults program now as well.  So I think slowly this is catching on....Best, Rebecka Peebles
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motherofsixdaughters
Thank you all. Lots of encouragement. Of which i need a lot right now. Thank you Laura for your reminder that this info shouldn't discourage. I will never give up the fight for my d's health no matter the stats. Your wisdom is so appreciated though as it does help me know better what I'm up against. . Everyone's stories provide lots of hope. Thank you
18yo D wr about to start phase 2 but at an ed inpatient for suicide

"...surely in the rush of great waters, they shall not reach him.  You are a hiding place for me you preserve me from trouble, you surround me with shouts of deliverance."
Psalms 32: 6-7
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WeNWinning
So glad you posted Dr Peebles and that you work with Y/A up to age 24 with FBT.  Having professionals in the Philadelphia area is wonderful
We worked with an FBT and my D when she was 22 after a decade of illness where Dr's/clinicians all  set her weight too low and she was unable to recover

At age 22 it was impossible for her to feed herself as ED had become so entrenched.  We became a team and it did take her longer to get through Stage 2 and Stage 3 due
to long term illness and comorbids.  How wonderful you have Dr Chen in the Philadelphia area.

Send more down to DC and Baltimore!!!


Thank you for your reply Dr Peebles and so good to hear you work with families of Y/A up to age 24.  I wish this were true on the whole East Coast and MidAtlantic area
Good to know that Dr Chen is there at Temple and perhaps there will be more clinicians realizing that it is important to help refeed a Y/A including those with long term illness

We refed my D at age 22 as she had no ability to feed herself the necessary nutrition for weight restoration.  Her weight was set too low by Dr's and clinicians for 7 years and Ed
had become so entrenched.

It also takes longer for those with long term illness for brain healing and maintenance - to remain in remission.












WenWinning (formerly wenlow) - a Mom who has learned patience, determination, empathy, and inner strength to help her young adult daughter gain full remission after over a decade of illness and clinician set inaccurate weights
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motherofsixdaughters
Thanks to all of you experienced voices for chiming in! I am very encouraged. I really value your report Dr. Peebles, that you have seen this age group to be nearly as successful as with younger kids. Thank you also for your encouragement to stay confident in leveraging our parental authority. We doubt some of our authority so much as she is practically an adult so this was a timely reminder.
18yo D wr about to start phase 2 but at an ed inpatient for suicide

"...surely in the rush of great waters, they shall not reach him.  You are a hiding place for me you preserve me from trouble, you surround me with shouts of deliverance."
Psalms 32: 6-7
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Seabird
It is extremely encouraging to hear from clinicians who have positive experiences of treating this older age group with FBT.   Who knows how long it will take my 17 y.o. son to recover, I expect it is going to be a journey of some years.   Although we threw ourselves into achieving WR with total determination, there are a lot of steps and stages to come in my S's recovery journey.   "Parental authority" has been really the key to achieving anything.  Maybe that will change to "parental influence" at some point, but it's likely to be a life-line for some time yet in my view.    

How AN could be treated in an older adult remains a complete mystery to me.  


Mother of 20 y.o. male diagnosed at age 16 with RAN, exercise compulsion, anxiety, depression & SH, FBT 4-5 mths to WR, WR now 3 yrs; suicide attempt 4-6 wks after WR,  IP 4 weeks.  Steady progressive recovery over past 3 years including support from psychologist on general wellbeing. Slow steady steps to success!! 

When your last bow is broken and your last arrow spent, then shoot, shoot with your whole heart
 [Zen saying}
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cct4
So great to hear the encouraging comments about young adults.  I have a 19 year old, has had an ED for under two years, she has just moved home and we found a FBT therapist three hours away who is helping us and we connect via SKYPE, i-phone appts etc. Our 19 year old was able to agree to this and was "excited" and "relieved" when we decided on this path, but now 4 days in, is wondering about her decision (as we expected)  We have a good relationship and I will use whatever leverage it takes to keep her home.  She agreed to at least a semester, right now I'm just taking it a DAY at a time.  Thanks for your support!!
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Trytrytry
Just because the level 1 evidence about treatment types, it is because it would be in my mind extremely difficult probably impossible, to do multiple randomised double blinded control trials. So all we really have to go one is the odd observational study that is probably done on patients that are different from your child.

That doesn't mean give up, and stats are always just stays, someone has to be the 1 in 100
I want a realistic dr and team, not someone who says what I want to hear and not a 'touchy feely nice' dr that doesn't have success.
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tanjilmum
Just noticed this topic after I jumped on in despair at my own daughter who is entering 3rd year of illness.  So, whilst we are not moving forward at present -  I can say though, that my sister suffered AN 30 years ago at the same age as my daughter.  It took her about 8 years (with  no support back then like there is now) but she has been fully recovered since age 28.  Healthy, happy and completely symptom free since that time.

So I don't hold that the illness is "there for life" if you've had it for a certain amount of time.  My sister is proof!  Even writing and remembering that gives me hope for our D again![smile]
Daughter 20-hospitalised Feb,20, 2012, re-lapse April, 2013, re-feed 2nd time, May 2013, sliding backwards again
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