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LauraCollins_US

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Reply with quote  #26 
Atdt31, wanted to address your questions about CMEs. The FEAST event on April 22 is for and about caregivers, so not designed for professional training -- though a good number of those attending are providers who just really want to participate, support and learn from families, without professional benefit. That thrills me!

We need to as a community do more to change and participate in professional development and training. To do that, please get involved with F.E.A.S.T., volunteer, and help support us financially: our only resources are the parents and our only limitations are what our members are willing to do and create and join together to do!

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FaithKeepsMeGoing

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Reply with quote  #27 
I agree with Kali that we need more in-network FBT therapists.  In fact, having dealt with several mental illnesses in my family, I've found that there are two problems in finding a therapist.  The first is that a therapist can claim to work with any type of mental illness.  Whether or not they actually understand evidence based treatment for that illness is another matter.  A podiatrist would never be allowed to perform brain surgery, yet allowing a therapist to claim they know how to help patients with eating disorders (ocd, bipolar syndrome, etc.) without specialized training in that particular disorder is not much different.

The second problem is that therapists who actually DO understand evidence-based treatment for particular mental health disorders usually don't participate with insurance, at least in my experience.  (I'm in the US.)  Unfortunately, I'm afraid that a lot of insurance companies are paying a lot of money for treatment that doesn't help much, and may actually harm patients.

Perhaps this is just my experience - anyone else have similar/different experiences?



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Torie

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Reply with quote  #28 
Quote:
Originally Posted by FaithKeepsMeGoing
Perhaps this is just my experience - anyone else have similar/different experiences?
n

My insurance was willing to pay for the excellent treatment at CHOP.  

-Torie

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FaithKeepsMeGoing

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Reply with quote  #29 
My daughter never needed inpatient care, and if she had, we may have been able to get insurance to pay for that.  Our experience has been with outpatient therapists.
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The Irish tell the story of a man who arrives at the gates of Heaven and asks to be let in.  St. Peter says, “Of course. Show us your scars.”  But the man replies, “I have no scars.”   St. Peter shakes his head and says, “What a pity. Was there nothing worth fighting for?”

spring

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Reply with quote  #30 

Agree, agree with everything written here. 

This is an illness.  It is caused by a perfect storm.  It is not caused by parents. Social media's attitude to food, and school education on calories is not helpful.

Things to add:

1. Early treatment.  Super early.  Super early and super tough.  No nice.  Medical community needs to take the lead on this and parents need enough support to deliver this at home with a remarkable level of consistency.  In this digital age, there should be creative ways to get more support to parents on the front line.

2. Transitions are critical. 
Finding a way for parents/caregivers to be fully around during IP to OP transition is critical.  Again this comes back to early treatment.  Much more support for successful transitions is needed.  

Spring

daddownunda

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Reply with quote  #31 
Hi Laura, thanks for this opportunity and your ongoing good work. My thoughts:
Let’s get to the pointy end first then.
Up to a third of ED sufferers will die from the illness (usually AN related and more from suicide than direct physical complications).
In Australia I researched our government stats and found that on average, 11 women have died each year for the last 18 years. Our goal in Australia and globally needs to be “No deaths from ED”
Then let’s work it back from there.
1.. Where is the voice from those recovered or on their way. What was the turning point, what helped, what’s common from sufferers?
2.. Let the caregivers of loved ones that didn’t make it have their say about what they would like to see if they had another chance.
3..In Aus. and I suspect many other countries, the safety net is too low.
Hospital will save you if you are just about to die but once vitals are stable, out you go. And now the medical system knows this severe anorexic exists, there should be a register that tracks them .. and yes if BMI is all we have then let’s use it to track a patient through guided outpatient care until BMI is at suitable level ( another topic on its own).
4..Early detection and intervention is important, I think many parents get this right, but it’s an important focus point to fill the gap and educate broader community. However I feel there is too much funding going into the broader areas that really don’t help the worst sufferers. eg Butterfly Foundation in Australia.. value for money? Where is the data are they tracking deaths / year and stats of suffer recovery rates and making it visible? Stand up and be accountable.
5.. In our case FBT for first two years resulted in good weight restoration. But far worse lay ahead in the next six years.
6..Professionals can help when, “the patient wants to get better “and the same will tell you that suicide is just part and parcel for the illness. OK we don’t know the cause, nor the cure, but it’s not bloody rocket science either. Our family has seen many professionals over 8 years so far, and there is a place for them, but when the patient wants to get well, half their work is done and it’s easy money after that and they are never held accountable anyway.
7.. My daughter needs a team of people she can feel comfortable with.
That includes a life coach at this stage. This should be in a non hospital setting preferably.
8..Carers spend way to much time and energy, many losing everything.
The illness has to take its course!
Keep your loved one alive and accept that you are likely to have little influence on recovery no matter what you are told, how much you do, how many books to read and how many forums you attend or use online.
9.. If it was cancer, even if they didn’t have a cure there will be someone appointed to look after you and let you know what to expect and how you can be treated. This should be same. Need an all round ED practitioner that can advise cares and sufferers and if they don’t know the answers then they will find them.
10..I say all this as a father of a severe and enduring AN sufferer, who has been continually surprised at the lack of directed support to what is a life threatening and recoverable illness.
Foodsupport_AUS

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Reply with quote  #32 
Oh and I forgot, that old chestnut. 

Define recovery from an eating disorder. 

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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.
sandytoes

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Reply with quote  #33 
Quote:
Originally Posted by LauraCollins_US

The reason I am reaching out to all of you is for your ideas on statements or beliefs about eating disorders. Our goal in the session will be to find consensus among all the participants (please come!) on at least three statements. You see, I have found that the ED world is so diverse and so divided that we lack common ground of basic beliefs about eating disorders.
 


Hi Laura,

While I agree with EVERYTHING written by all the amazing moms and dads who have already responded to you, I am wondering if it would be easier to come to a consensus if the three statements were about what Eating Disorders are, not about the treatment of Eating Disorders. 

Here are my top three:

1. You cannot tell someone has an eating disorder by looking at them.

2. Anyone can have an eating disorder, no matter their age, race, gender, etc.

3. Eating disorders are biologically influenced illnesses, not a choice.


My top three about treatment are:

1. Early intervention is very important.

2. Food is medicine. Full weight restoration is a must. 

3. Parents are often the best to help, but need support.

Honestly, I hesitated to even put the first #2, do professionals actually dispute that anyone can have an eating disorder? Sheesh. I think the first #3, the 'biologically influenced illness' is where you'll get the pushback. I spent time with a respected ED clinician who disputed this because "there are identical twins where one has an ED and one doesn't". 
LauraCollins_US

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Reply with quote  #34 
Thank you all for your generous, thoughtful replies. They are very helpful to me as I plan this workshop!!
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needhelp

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Reply with quote  #35 
Quote:
Originally Posted by LauraCollins_US
Parents, I am here to ask for your input on a session that I am co-moderating at the AED International Conference on Eating Disorders next month. The session is part of the Difficult Dialogues series; these are sessions that raise controversial or difficult issues in the field. I am honored to be co-moderating this with leaders in the field. The description and a link are below.

The reason I am reaching out to all of you is for your ideas on statements or beliefs about eating disorders. Our goal in the session will be to find consensus among all the participants (please come!) on at least three statements. You see, I have found that the ED world is so diverse and so divided that we lack common ground of basic beliefs about eating disorders.

So the session will start with giving small groups a list of statements about eating disorders and trying to find points of agreement.

As the sole representative of the parent community on the panel, I want to make sure to include statements that THIS community believes, or has heard, on the initial list.

Examples:

Disordered eating and eating disorders are matters of degree, not different in nature.
Early detection and intervention are important.
Eating disorders affect people of all genders, ages, races, ethnicities, body shapes and weights, sexual orientations, and socioeconomic statuses.

PLEASE SEND YOUR SUGGESTIONS ON STATEMENTS FOR THE EVENT PARTICIPANTS TO CONSIDER!!!
Laura@FEAST-ED.org

Eating disorders are addictions difficult dialogues description.png 
needhelp

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Reply with quote  #36 
First, thank you so much for the time and effort you are putting forth to help us all help our loved ones.

I am new to the world of ED, and this forum.  The first fact that I think needs to be shared, is the fact that EDs truly are brain disorders.  This amazed me. I am fortunate in that my child is able to tell me "my bad brain is telling me to do this, but my good brain wants to do this." That served as a huge lesson to me about what we are up against as a family.  Too often we hear that it is a control issue, a choice, the result of an unfortunate childhood incident. No - this is typically a disorder that takes place in the brain - proven by brain scan based research.

Another important point that I have had verified by this is sight is that families are a vital cog in the recovery machine. I think the simple (in words - we all know not in action) phrase "Food is Medicine," is a basic guide to keep parents on the right track.  We know our children, we know how to manipulate situations to for the benefit of our children's objectives, we know when our children are making baby steps forward. . . and backward. It is so important that families do not depend solely on professionals.  As we have likely all found out - there are not as many professionals in this area as those who would like to claim this title. Yes, it is important to find the best help possible for your child -keeping in mind that "best" is subjective and differs among patients. Interview places - you are the client - it's your child - it's your money.  Personally, I think it is better to find the right fit, than the most immediate fit (there might be a reason a particular provider has so many openings, right?).  Of course that doesn't advocate waiting days - but in one day you really can interview at 2 places (3 if you're an amazing scheduler, and your child is truly game!). If you do lots of phone interviews and Google reviews, you could easily narrow down your choices and get ready for a plan, since you have already gathered data on the places you visit.  The visit is to learn some more specific details of the program, and to personally determine if that program is a good fit.

Thank you very much for acting as the voice for us.  This sight has already brought me a sense of peace.  Reading real advice from real families, and knowing I am not treading through these unknown waters alone (although I wish none of us were in this cesspool called ED), offers a strength, and a place to go when times are challenging.

Thank you.
mygirlmce1

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Reply with quote  #37 
I'm fairly new to ED.  After 4 short weeks in a residential hospital this past year, my 18 year old d was discharged to me with no instructions except...have her at PHP the following day at 1:00pm.  

4 weeks of wasted time.  Why not have a program in place for caregivers to learn things like..."the does and don't" of ED food support before their love one transitions back into the home. I had no idea how to make the transition from 24 hour care to 7 hour care.  I think it would be safe to say most families loose ground during this transition.  We made a handful of major mistakes between leaving the residential hospital and starting the next phase of treatment.  I found myself asking my d question about how meals were done in treatment and when and what kind of snacks she was suppose to have.  Without knowing it we gave her ED a comfortable house warming all the while thinking we were helping to ease her distress. I feel like l've been playing catch up ever since. 

When you are new at this you don't know what questions to ask. You don't know where to find information, you can not educate yourself quick enough.  You have no idea how to find support. No place to ask the questions that pop up throughout your day. I wish there had been a family advocate on staff at the treatment center.  Someone there to answer our questions and listen to our concerns.  Someone to bridge the gap between the parents life time of experience with their kid and the staffs experience with ED.

Also, if a treatment center offers a family night like ours did...separate the parents from the patients for a portion of the time.  That would give parents a place to ask real questions without editing themselves for the ED.  It would also give the parents a chance to find support in one another.





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kazi67

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Reply with quote  #38 
I’ve got another suggestion
How about GP’s do their job properly (what they are paid to do)
And not make parents feel like “helicopter” parents
My 19 yo d has relapsed as GP was not checking scales and she was lying
I should of checked too I guess but was made to feel like I shouldn’t even be there with my 19yo
Back to square one, here we go again [frown]
If I did my job so poorly well I don’t think I’d have a job
Need to rant [frown]
melstevUK

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Reply with quote  #39 
daddownunda,

You make some really great points here.  In my own opinion, until we have a zero tolerance for deaths from eating disorders, we are not going to make the huge strides that everyone is capable of making because there is an acceptance from a large number of professionals that these statistics are to be accepted - when often clinical care is just not up to date or of a high enough standard.

We never leave cancer patients until they are near death before we intervene - and that position has to be challenged in the world of the treatment of eating disorders.

I have had some discussions recently with people who are having problems and I am frankly disgusted by the arrogance that is still out there and the notion that nothing can be done because patients need to want to recover before anything can be done.

I don't know what age and stage your d is at - but never give up.  With up to date knowlege and nutrition and plans for your d's future, she can recover and have a life worth living.

Addendum:  it might not be a 'perfect' life - those afflicted by eating disorders tend not to have the natural 'wiring' for an easy angst-free life, but nevertheless they can recover and find reasons to live a meaningful life.  

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atdt31_US

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Reply with quote  #40 
Wondered if there was any consensus reached by those professionals in attendance.
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Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, I believe, based solely on weight being less than 75% of Ideal Body Weight (not sure if he also considered low bone density to be a significant nutritional deficiency - not positive he knew her bmd).
LauraCollins_US

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Reply with quote  #41 
It was an amazing session. Standing room only, and many had to leave because too many people were in the room. There were all kinds of stakeholders there: clinicians and parents and advocates and researchers of all backgrounds. There were definitely some "difficult dialogues" as people worked to find consensus and learned what the others in the room thought and believed about topics around eating disorders.

I was surprised at how very engaged everyone was, and impressed at how people handled conflicting belief on foundational issues. Despite the close quarters, people were civil and forthcoming and attentive!

At the end of the session there was great enthusiasm for doing it again next year, perhaps with a more challenging task of consensus on what issues we DON"T agree on!

Here were the statements agreed upon in the room:
DbQMXuHWAAAspc4.jpg large.jpg 


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Foodsupport_AUS

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Reply with quote  #42 
Thank you Laura for sharing the agreed statements. What is the significance of the numbers after each statement?
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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.
LauraCollins_US

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Reply with quote  #43 
sorry! should have explained that. There were twelve groups of people, and each group was initially asked to find six statements in the pile that they could have consensus on in 15 minutes, then one person stayed in each group and they all dispersed to different groups and the recombined group looked at the pile and brought it down to 4, and then we did it again and they brought it down to 3. So the results you see in the picture are the top statements and the number is how many groups ended with that in their three.


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LauraCollins_US

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Reply with quote  #44 
To clarify, there were 35 statements in the pile to start with. So I'm impressed that some of these ended up in the final three in several groups. It was also gratifying to see WHICH ones bubbled to the top. I would not have predicted that these would be the top ones.
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sweetblossoms05

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Reply with quote  #45 
Strategies for recovery need to be multifaceted and health providers need to be open to change in line with research.

Programs need to be tailored to individual needs and include extensive support over the school holiday danger period when routine is stripped from adolescents

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