Sunday, June 03, 2007

Advocacy for what?

I've given a lot of thought to how those of us who have children with eating disorders can model our advocacy efforts after those of other groups. Parents of kids with autism, for instance, have been very effective in pushing for legislation covering treatments and other issues.

The thing is, most people aren't busy arguing about what causes autism in the first place, and they pretty much agree on treatments. Whereas folks in the e.d. world are divided in every possible way.

My friend Laura Collins says she'd like to lock all the e.d. experts in a room until they come to an agreement. Ha!

One of the biggest arguments, of course, is the biology-vs.-psychology one. Both parents and professionals have vested interests in taking one side or the other when it comes to both cause and treatment.

When I imagine trying to bring together a coalition of eating disorders parents and professionals to push for legislation and advocacy, I get a sense of how great the conflicts are. For instance, I don't think individual therapy is useful in treating anorexia, at least not during the active recovery phase, so I'm not sure I would want to push for legislation to cover lots and lots of individual therapy.

In case you couldn't tell, I'm of the biology camp, as in the Minnesota Starvation Study. I don't believe kids "think" their way into eating disorders, and I'm damn sure they don't think their way out of them.

I think what's needed most are more and better treatment studies, like the one Dan Le Grange is doing at University of Chicago. We need to know what the best treatments are for anorexia and bulimia.

What do you think we should be pushing for?

21 comments:

carrie said...

Harriet,

As I went through home refeeding during this past year, I found individual therapy to be extremely helpful in dealing with the distress of eating and weight gain. However, this comes with two caveats: my age (almost 27) and the length of illness (7 years). I knew what I had to do, I just needed support getting there.

I, too, believe in the biological basis of EDs. Food is medicine, and it has been this last year of consistent food and love that has made all the difference. Individual therapy depends on the age and mental status of the individal. I think therapy, if accepted, can help with behavioral change. I'm not a psychoanalytical person. I want to know what will help me get through the day. I want skills. Younger kids (Lord only knows what, exactly, I mean by that. High schoolers seem like children to me anymore...) probably aren't going to benefit as much from therapy as someone who is older, more experienced, and ready for change.

I think we should be pushing for which treatments are better for which people. Many people with AN are teenagers. Many are not. I think it would be best to have a range of treatment options that are evidence-based that can be tailored towards the individual's needs.

mary said...

This is tricky territory. If they ALL did get together in a room and come to an agreement, who's to say we'd agree with them!
For this reason I'd have to respect individual needs first BUT make nourishment become the medicine of first choice. When a person re-feeds at home the family or carers deserve any support they might need. Someone trained to help wouldn't have to be a nurse but someone who understands what is needed. Why should a family have to do it alone if they are choosing home. They deserve support! I would happily do this but at this point I know of no type of set ups like this available other than elderly home care or for those with mental challenges.
Parents of autistic children have full day school support to relieve them and I know we have special schools just for them to have the best training available. I even know one young man who has 2 paid workers who assist him at his job of paper shredding, which is a little ridiculous but true. On the other hand, I'm not sure that parents who struggle with mealtimes with their autistic children have the support they need! It's quite a challenge!
I know of ED sufferers who were able to use a learning disability from school as a means of payment for their treatment. I do not like the discrimination against a person who doesn't have the disability'label' but their ED just appeared, unwelcome, uninvited! This may be what we have as a our weapon in making them wake up and help whomever needs it. Discrimination based on assumptions that ED's are merely a disease of vanity is discrimination! The Dr's. must know better by now. A person shouldn't have to have another disability to qualify for automatic support!
While I too believe in the biological aspect I also understand that when a T can challenge and guide, as Carrie's seems to do, then it can change a life for the better. [can we clone your T Carrie?] My daughter's T sucked and was dropped after a couple months of staring sessions.
My daughter's use of affirmations can be equated to thinking her way out. She knew she had to ignore any nasty messages about herself as it was the disease speaking. Doing this required her ability to discriminate and choose herself. In a way she did think her way into full recovery. Hard to explain Harriet. I only explained, my daughter then did the work.I believe we need to speak to people like they are 'in the room' even if they are still having trouble trusting us. Appealing to the person within that senses somethings not right may have to happen at some point in recovery in order to prevent them from slipping again and again. We want their trust and at a certain point we must trust them.
I struggle with wanting to give free reign of money to people who may abuse it. Yet, I don't want to hear that people are turned away because ins. won't cover their treatment. Still, I want to know that the treatment centers are being held accountable for their work and aren't merely prolonging the ED's or at times making them worse. There are places that need an overhaul. Treatment needn't be a prison, when in fact it needs to be a place to free the person with the ED of the prison within. It also doesn't have to be a retreat with spa type care where the ED is allowed to thrive and it learns that it has a safe place to hide. Treatment needs to consist of serious hard work and learning to think again as the Ed distorts correct thoughts.
Yet for some strange reason I feel that it's all overpriced! I'd prefer we were allowed to create our own places of recovery and offered more outside the box sort of support. I wish that it was an honest world.
I don't know if I said anything that makes sense.: ) I have way too much of this stuff in my head!

marcella said...

As I've said before, here in the UK Autism doesn't get that much of a high profile either and I haven't really come across effective parental advocacy. ALL mental health issues tend to be the Cinderella issues, with eating disorders being no less (and no more) well provided for than schizophrenia or bipolar. At the moment what I'd be pushing for was support for the kind of studies Dr LeGrange is doing that both look at the science and support sufferers and their families. In the UK Professor Treasure is doing similar work on a very low budget and I applaud her.

Harriet Brown said...

You know what I love best about blogging? It's when I get to learn something I didn't know before. All of you have opened my eyes to aspects of e.d. treatment I hadn't fully thought about before. Thank you for that.

You're right, Carrie: There is a role for therapy in recovery. For my daughter it came long after weight restoration, that's all. I suspect that's true for many people, but not everyone. I'm with you on the evidence-based treatments. I've just seen too many families waste time with frankly ineffectual therapists doing useless therapy. (Before AN entered my life I was a huge proponent of therapy. Just another thing that's changed for me because of this illness.)

Mary, I agree with you completely. Families struggle to do this alone unless they're very lucky in this country to find support and therapy from one of the few groups that really can give that support. I think therapy is like teaching: The teacher/therapist IS the program. It's very hard to quantify and reproduce the benefits of an excellent therapist. Bad therapy is worse than no therapy at all in my opinion, at least when it comes to e.d.s.

I do want to say here that my daughter's therapist was and is wonderful. She acknowledged that she couldn't do effective therapy with my d until she'd gained quite a bit of weight. My d sees her from time to time now, and now is when she's most helpful, because now is when my d can think strategically and critically about some of the issues in her life.

Marcella, I agree with you too on the need for more studies. But that's also complicated. More on that in another post, I think.

Tracey~ said...

Harriet and Everyone,

Oh... I don't know where to begin- and this is going to more like a rant- so sorry.

We DO need to do SOMETHING in terms of advocacy and putting more pressure on the medical community to get their behinds in gear, even if it is only to begin providing parental support- IMMEDIATELY.

With every week that passes by, and we've been re-feeding at home for aprox 19wks with our d; it just seems the Dr's/therapists just go along their merry ways- our d's ED Dr scheduled an apt for us in 6wks! Seems our d is just so fine and dandy- and yes, she is so much better... but we/I/she did that- NOT them! And it just doesn't end with weight restoration, etc.

And I want some support, some sane, logical, kind, loving support! I don't want to have to drive a zillion miles/hrs from our city to scramble and find SOMEONE to help us on this long, exhausting journey... just help guide us, and help our d find some perspective and mind-shifting within her "fatty" food fears, thoughts, etc.

I keep hearing from her Dr that support is so "hard" because supposedly they had "it" at one point, though when I ask for contacts, etc. I don't get them. It seems that there are these peak times for ED's (!) then the groups magically appear... then viola, everyone gets better, and they disolve- hmmmm. I think they are full of BS and too damn lazy to get this essential component in place. Every damn week her ED doc is on some conference or other, but what the hell are they bringing back with them? Zero. They all go into this boardroom and share the info, etc. and what do the parents get in the end- nada!

As I mentioned prior on the Maudsley forum; Dr LeGrange and Dr Lock were both here in WI at friggin' Rogers Memorial giving a two day conference for Dr's/therapist, etc. and not ONE parent was invited to this event from the community- this is just so blatantly a slap in the face! Why would you just provide these "tools" to a bunch of individuals who are going to turn around and charge enormous amounts of $$ passed onto the desperate families? Someone please explain this lunacy to me!

WE parents need the support/coaching/training- not the damn Dr's who continue to just look at our kids like specimens and refuse to form that vital relationship with the patient. It's never going to change unless they begin to change their outdated thinking.

And I'm telling you, from what we've experienced, unless someone is paying these Dr's/therapists more $$ to do it; they will just continue providing low quality care that just keeps us in this mind screwing bind.

I would love to know their true hold up for not responding to families needs for support and assistance in the area of ED's. Is everyone supposed to go and file "disability" for their children? What the hell kind of resolution is that?

I want to know where all the data and follow up has been going from these "treatment" facilities that are blanketed to us parents when we are at our most vunerable. Places like Rogers, Waukesha Memoria, Aurora have been treating ED's for decades... where is all the records and data of recovery success on these cases. Instead I see them building and promoting more facilities NOT promoting FBT or "utilizing Maudsley method therpay" as they falsely state on their brochures. These places do need to be held accountable.

I would like to know since LeGrange is here, closer to us in WI; why they are not providing support within a more wider radius? Surely there have got to be some within our area that do care enough about this issue, and perhaps are providing these services, but where are they? The listing on the Maudsley site for WI is, sorry to say, a joke. Rogers is still on there and they are NOT providing Maudsely based therapy. And that Dr Cannon is now a divorce therapist/speaker... who seems to have alot of balls in the air to cover as wide amount of possible $$ as possible.

We are seeing another therapist on the 11 out of Wauwatosa, Laura E Gray at Dr Laura Lees: www.heartandmindmatters.com- she has been highly recommended... we'll see as the other ED therapist really bit the dust and was completely useless.

Perhaps with all the parents "out there" Maudsley-inspired, we can organize some national parent committee/listing that begins to find out how to establish Maudsely parental support/services within each state. Maybe Dr LeGrange's office/staff in Chicago can be of some help in letting us know how to set something like this in motion. The Dr's are not going to help us at this point, outside of helping stabilize the immediate needs of those affected with ED's. I mean how radical an idea is it to have everyone, the ED Dr, therapis, nutritionist, etc. all under one roof? Why is this such a complicated goal?

Thanks for reading through my angry rant ladies, I'm so grateful to have you all!

Harriet, we'll see you on the 13th, it will be good to finally meet you!

Peace~ Tracey

marcella said...

I love your rants Tracey. And you're right. The help available to parents and sufferers in any part of the globe that I've come across is woefully inadequate. That doesn't mean the professionals are all baddies, MOST that I've come across are well meaning at the very least, and many are caring, compassionate and passionate about patients - but as yet it's not enough against these vile illnesses. Lets charge like wild rhinos against the illness and against systems and authorities that let us and our loved ones down, and save our own care and compassion for our children.

mary said...

Perhaps parents need to start asking what kind of support they can expect to receive. You'd be amazed at what asking can do. It sets the ball rolling.
Starting a parent group yourself is another option. One friend has one she goes to in Nebraska and she found it helpful to have a place to share and even laugh with other parents/carers.
Meanwhile keep asking family members and friends for support as you never know who can help.
Appealing to the local state representative is another direction. Ask them what's available! Perhaps you'll get an advocate who'll help you so you can focus on helping your child. Anyway, it was a good rant Tracey. I hope you feel empowered and a wee bit better.

Harriet Brown said...

I've sadly come to the conclusion that even the best, most knowing, kindest doctors and therapists don't truly understand the nuances and realities of anorexia. They don't understand so many things: The power of their words, of anyone's words. The demon-like qualities of this illness. What parents--or someone--must do to help someone with anorexia recover. The fact that anorexia is not a choice, even though it sometimes sounds rational.

I prefer to think that they do not know or understand, rather than to think they are uncaring. So one thing we must do is educate the doctors and therapists and nutritionists. Who will support us? We have one another.

Tracey~ said...

Morning Ladies,

Thank you all for sharing your honesty, thoughts, and kindness- bless you all!

Hmmmm.... My anger and rant really is due to the fact that I HAVE been asking for help, support, advice; answers, (and that is with knowing that all the "answers" are not clearly evident, collected, known, etc.) But I just keep asking- I'm not giving up, which from the silence and runaround I receive, hours of phone calls to useless "resources", etc. seems to be what most have done- otherwise I can only assume that with the limited range of "treatment" options being offered: bi-weekly weigh-ins, vital checks, etc.; and other families that seem to not exist, have all gone on, are fully-recovered, "cured", etc. What other explanation is there for this inadequacy? Ladies, we're doing what everyone is doing- we're settling, and I'm sorry to say, for less than both our kids, and our families deserve.

If these Dr's are constantly gone on this conference, that conference, here they JUST had a two-day conference with Dr LeGrange, but don't seemed inspired enough to get moving in a collective, consistent new direction, or take small steps to do so- what's the holdup? And why are they not sharing the info they get on these "conferences" with parents, especially when they ask?

I'm sorry, but I have been reaching out, and we are either living in an area that is robotic and cold, which the Midwest seems to nurture, unfortunately- maybe it's the weather- hee! And/or someone higher on the totem-pole of power, etc. is NOT wanting this change in thinking/application within treatment of ED's, and the same 'ol same 'ol is protocol standard.

With the increase of new "programs" and more openings of facilities within the Rogers Memorial umbrella, why would they want to rock this lucrative boat? Or are they are not getting enough feedback and demand from parents and the community, schools, etc.? Which is it? I WOULD like to know why the md community/therapists are waiting to implement change, and not helping families with supportive and intelligent feedback/coaching. Many of these Dr's are STILL assuming that therapists will handle that end; and of course, they aren't.

This is all too much like office politics to me, passing the buck endlessly, no one is held accountable, no one know's anything, business as usual. And they know we parents are just too damn tired, and have too much going on all at the same time, and are mostly isolated to really do much of anything. I'm sorry also to say, that we should not be the ONLY one's educating these already educated folks. They have the money and so many more resources at their immediate disposal than we do, (not that I would let off the pressure to keep up the pressure on them, etc.) But they need to get off their high, elitist-horses and pull up their sleves to get a little dirty with the resto of us in doing the actual work too! How much complacency and cow-towing are we going to continue to give them?

They are NOT doing their job, and need to revamp a completely outdated, dark ages modality of treating ED's and their families- period.

So much of what is involved with Maudsley and FBT is basic to any human being: love, compassion, caring. This is the medical community's greatest obstacle, and has been ever since the practice and training of medicine, and certain therapeutic modalities have taken out the HUMAN component and necessity to treat the ENTIRE human being as a WHOLE entity.

I actually think AN, as devastating as it is, is also a demanding wake up call to this redirection of a lost art of treating a patient- DO NO HARM, "To teach them this art, should they desire to learn, without fee and written convenant", "Into as many houses as I may enter, I will go for the benefit of the ill"- how many of us have been benefit to this throughout our journey to treat our child? This is not a good/bad argument; this is what is expected in their profession to maintain a personal a professional conduct within treating another human being, and it's not happening.

The Hippocratic Oath that many of these I-want-to-make-alot-of-$$, I-am-DOCTOR-hear-me-roar, (and there are many who should NOT get into this profession, but are allowed to practice and really do a number on patients, etc.- another story for another time!), is not taken to heart.

And with an illness such as an ED, EVERYONE has got to give a damn for the long haul. That too, may be very telling in our day and age of why this is so damn hard to treat long term since the magic pill is not going to do the trick- voila. Patients and families are getting shuffled around, it's too much like social services, and endlessly useless bureaucracy.

I had two parents, who in the beginning of our d's illness were really quite supportive, etc. but as time has wore on, and I do think, just like my d's school, they just assume that because she "looks good", "has that sparkle back in her eye", that everything is done- she's all better- cured.

They truly do not understand the depths to this illnes, and all could use a little background, but we can't hold everyone's hand, either. This is a social, fear-based triggered illness as well, and it would be really nice if our kids weren't bombarded with such bizarre ranges of media hype and frenzy, constant diet adds, Paris Hilton underwear viewings, etc. If the national campaigns of movie ratings, over commecializations to youth, etc. can have their say and recognition, I think this may be another area of advocacy we can surely look into.

When my d was hospitalized, you would not have believed the crud that was playing on the TV in her room; that the nurses were watching/reading when she was sleeping- all in her room! I was astounded and looked around at everyone like, is it me, or are all of you so blind to the severity of this illness? Why should I have to have a discussion with the head nurse on staff re this?

And getting back to these other two mom's, whom I thought were being kind and trying to reach out, were actually exchanging their own frightening ideas of what an ED/AN is, and even postulating how my d may have "gotten it", by asking me if my d was sexually abused! Wow, that just caught me completely off guard and left me entirely speechless, let alone shocked.

The freedom to just assume so much freakishly, and horrifying terrible assumptions revolving around HOW individuals get an ED, (and I have to see these fine ladies/mom's 3x's a week- ugh!), further widening that gap of empathy, common sense, and decency is just too easy and further infuriates me. It's a total free-for-all to make any erroneous judgment upon not only the sufferer, but the parents, I really, really despise this.

And as parents, unless we come together, more unified, along with the md community, to dispel these crazy minds spinning whatever they wish to continue putting out there, it will never end and keep many in further silence. Shame on them!

And this goes back to many a thread on what just continues to get blamed on families- because we are all so damn dysfunctional if any of our children suffer an ED- and the perpetuating untruths of what surrounds an ED. This is also a very important area that we as parents really have to push to end.

Of course, I'm not leaving abusive parents off the hook, because even when my d was in the hospital, there was a girl- 7yrs old! with AN, who's mother had also died of AN, and of all the sad ironies, her stepmother was also AN... obviously there is something much deeper that was not being addressed and attended to here, and that seems to be another failure also on the social community/services as a whole- more shuffling of people in desperate need of some serious early intervention. At 7yrs old, does a doctor truly not know an ED is developing? Or were these folks too far in an isolated rural community for anyone to really catch it in time? These are heartwrenching realities that EVERYONE should be concerned about preventing.

The need to have the genetic, environmental, and further data and studies done to really clarify and dispel such wide differences of circumstance, etc. so that we're are all not lumped into one category. And then the focus can be where is should be- on effective, ethical, humane treatment- FULL recovery and support. The individual areas of personal environments and possible abuse, etc. I think are extreme cases, but I think the manner of fear-based eating, fat-skinny phobias really need to be nipped in the bud. We should not have to tolerate this type of ambiguity and indifference any longer.

Ladies, apologies for my length. I know I have so much to say, and thank Harriet for having the space on your blog to post and reach out! What would we all be doing without the computer? People here, locally, don't care- this is a fact. They say they do, but have just no clue to what we parents are doing everyday of our lives to keep our daughter's and son's alive. They should know, perhaps that reality would compel the treatment centers to hire experienced staff, trained Dr's, therapist/nutritionists. I still can't believe they are paid and billed by insurance for what they ARE NOT providing in places like Rogers and Aurora. And for what they are charging!

Some parents are just fine with all of this, it's scary; or just too desperate with no other choices. I wan't to know the true #'s/stats of recovery and relapse; and see the "success" stories that these facilities tout and advertise about. Reminds me of the old snake-oil salesman from a lost century- this is ED treatment in the 21st century folks! When is enough enough?

Strength and Hope to you all!

~Tracey

carrie said...

Tracey,

No need to apologize over the length. You have a lot of good things to say. And let me say how jealous I am that you get to meet Harriet. I'm across Lake Michigan from ya'll.

I think the real question you're getting at (please correct me) is about empowerment. Empowering parents to do what's best for their child. Empowering the health care community to say "Honestly, there's a lot we don't know. And a lot we do." And empowering other people who deal with those of us with EDs to take a good hard look at their own habits and beliefs before they assume they know more about 'healthy living' than we do.

And empowering them to rid themselves of antiquated notions of EDs.

I think one of the worst ways in which EDs are handled is the isolation it brings to sufferers and families. AN is, by its nature, a very isolating illness. It can tear a family apart if not handled properly (or due to some bone-headed siblings, in my case). Families and sufferers are made to feel helpless and alone. There is a certain amount of trust one should have towards the people who are treating you and your child and the illness. But respect is a two-way street.

Lastly, I would love to get some good evidence-based treatment about therapies that work post-weight restoration. Specifically in adults. And I'm volunteering for any such studies? Are you out there Dr. Legrange? ;)

Jane said...

Harriet,

I think that this is such an important topic. It's my strong view that science ought to lead us. There is wonderful work that is being done. I'm especially impressed with Walter Kaye's work and Cynthia Bulik's. Kaye's program at UCSD Eating Disorders has a great website this good information available for parents on evidence-based medicine and the neurobiology of eating disorders. The Academy for Eating Disorders has some great articles provided free and full text on evidence-based treatment as well.

One thing I always bear in mind is that the Maudsley research is still quite preliminary. Results of the studies are promising but there are more underway. The approach shows a significant failure rate as well. Clearly it's not the be all and end all. We cannot give up hope on people who haven't been helped by FBT so other options need to be explored as well.

On the idea of support for parents I think I may come to this from a different perspective than some in that my daughter was ill in 2004. I think that the perception of EDs has already shifted substantially in the right direction since that time. While everyone might not have the degree of support they'd prefer there are some great books (Help Your Teeanager Beat an Eating Disorder and Eating with Your Anorexic) and websites (EWYA and MP) that weren't available only a few years ago. The approach works differently in different families and not everyone wants/needs the same type of support. (In fact there are many parents who do not choose FBT.)

Frankly I don't share Tracey's bad feeling about Lock and le Grange for offering training for professionals--I wish very much that there was more of this sort of thing. Training professionals on how treat patients/families is a specific topic and I can understand that it might be conducted separately. FWIW L&L did give a talk for parents (for free) while in Denver after they were invited by Janine Vanderberg (a mother who'd helped her d with FBT). On the same visit they conducted a workshop for professionals (for a fee). They are researchers and clinicians I'm not inclined to find fault with them for being insufficiently evangelical. I'm glad that their parent book is available for who want to find information on the approach.

I DO think there are some very good doctors and therapists who truly understand the horrors of this disease and the difficulties for families (This may be the first time I've ever disagreed with you Harriet--it pains me!)

Anyway, I think the bottom line is that scientific inquiry on both cause and treatment side ought to be the first step. Solid research ought to guide the well intentioned education and prevention efforts so they are effective.

Harriet Brown said...

One thing I learned the year my daughter was so sick was that it wasn't that people didn't care--they were just dealing with their own issues. She got sick in 9th grade, and I was kind of appalled, honestly, at how little support she got from friends. (Of course she didn't want to talk about it with anyone, either, so they may have been responding to her cues on that.) What I came to realize was that many of those kids were dealing with big issues themselves, if not eating disorders then cutting, depression, anxiety, divorce, and so on. Not to mention hormones and starting high school, all difficult things. That's why I think we are one another's best support here--we know what we need and we know how to support each other!

I agree with you very much, Jane, about the need for science and evidence-based treatments. Maybe I was a little harsh in my assessment of doctors and therapists. I've met Dan Le Grange and liked him very much personally; I have no experience of him as a clinician. There are things in Lock and Le Grange's book that make me cringe, right next to the things that give me solid information and hope. Maybe it's always a mixed bag.

More tomorrow.

marcella said...

I guess it IS always a question of perspective. There are bits of the Lock and LeGrange book that make me want to put my head in the oven, right alongside bits that make me want to shout out hallelulia, but they may well be different bits to those you have found either helpful or hindering Harriet. I have never been anti-therapist or anti-doctor. Indeed my being pro-therapist and pro-doctor (even when the two camps have been opposed) has proved a significant problem in my daughter's care but the lack of evidence and proven treatments and, yes, I admit it, a magic wand to wave away these horrible illnesses, frustrates and saddens me deeply. I believe the only way forward must be compassionate scientific research of the kind being done by Kaye, L and LeG, Treasure et al.

marcella said...

By the way Harriet - thanks for the post and the opportunity for this - bet you didn't know what you'd started!

Tracey~ said...

Hi Everyone,

It seems there was/is some misunderstanding(s) re my lengthy previous post by some. And I'll try not to make this post too lengthy- but I'm not certain with such a topic/illness that it will be possible. Sorry, please bear with me!

Let me just clearly state- and this would probably be directed to Jane (?)- that I am NOT anti-Dr/therapist.

I am all for the long overdue research, continued studies, evidence-based data; and f/u that is so sorely lacking within treateing ED's. There is not going to be further headway, and challenging outdated thinking/practices and modalities for successful/healthy recovery- and let me emaphasize- RECOVERY- without any of this. Please don't attempt to divide this discussion into two opposing sides; or misinterpret what I wrote- this is not my view.

I'm sure there are "very good" Dr's working in this area of illness. Jane, maybe you can list those Dr's/therapists whom you've directly experienced with the care of your child, (are the two individuals, Dr Kaye and researcher, Cindy Bulik the one's you are highlighting?), as this could be very helpful to other families in need. Of course, that is provided, that that family lives in close proximity, or can afford to access these "very good" Dr's.

I think this brings up another very important deficit within ED treatment- ACCESS and affordability, and/or insurance coverage. Geographically, where one is located is a HUGE indicator, along with financial means, and insurance coverage for ED treatment, of the quality of care and outcome in treating this illness. This cannot be emphasized enough.

Kaye practices out in California, (and his program/work, indeed does seem to be really moving in the right directions and applications), and I hadn't had a chance to find the figure on the "5-Day Maudsley Program", which does sound great; but I believe another parent had mentioned costs over $5,000. That of course, does not put into account the family's travel/flight, hotel accomodations, etc. And I'm almost certain, many current insurance plans, (we still have only 13states with mandatory treatment for ED's by the way- and if you live in Cali you are blessed!), would not even cover a fraction of the costs involved.

Cindy Bulik is a researcher, in North Carolina (?). How are we suggesting these families just pack up, go into debt/bankrupcy, over charge their credit cards- for this scattered and expensive care? Or are we only highlighting and listening to the voices of families with means?

These Dr's and therapists who are in the field of ED's not only to be more than adequately trained and prepared, but to communicate with one another as well, share their information/knowledge; and really work more collaboratively and collectively so that patients/families are not forced to start at ground zero everytime they need to find the appropriate treatment that fits say an 11yr old vs 19yr old, etc.

Many of the Dr's/therapists are not truly looking at the individual circumstances and/or symptoms present and are attempting to apply a general one-size-fits-all, (no pun intended), treatment protocol, which is surely only creating more confusion and inconsistency for everyone involved with the patient's care and f/u.

I'm also not expecting some puritanical- "evangelical" character of Dr's/pysch/therapists, or ANYONE to be superhuman- that's exactly my point- we/they are not!

I do, however, have an expectancy of an individual holding an MD, PhD, etc. to uphold their practice with efficacy, honesty, peer-review; as well as a considerable amount of integrity and compentency- that just goes with the territory. Otherwise there is no validation or expense for their "expertise" is there?

Science is based on studies, knowledge, facts, etc. I think we all understand the value of the work, and what it can bring to the treatment of ED's, c'est ca. But science, like medicine, is also practiced and carried out by humans, (okay yes, the data, etc. also get plugged into computers, and technology is also a vital component...), and humans make mistakes, have biases, prejudices, all the other good stuff that makes the world go 'round. And this can sometimes get displaced within even the most purely "objective" scientific method process/studies.

And on many levels these highly trained/educated individuals DO have to scrutinize, carry out with zeal- evangelically!- themselves and their work, perhaps even more than the rest of us since they are dealing with human lives- don't you think? Yes, science is vital, but WHO is delivery the treatment is absolutely as important.

Researchers, scientists, and sometimes even clinicians who only write scienfic journals, studies, statistical anlyses without having the direct training/mentoring, knowledge, and probably more poignant- working experience/relationship with an ED sufferer for any true length of time, are going to only have half the data/facts/picture.

This is also what treatment facilities are anemic of, by attempting to expand "programs" and treatment without having enough fully trained and credentialed staff working with these patients and families, and simply winging-it by a 1-2hr training from a conference, etc.; or by trying to go by reference from a text. Kind of scary to put ones' trust, and child into the hands of some of these individuals who may have all the head/lab-knowledge but either none or exteremely limited and supervised actual, physcial application practicum.

Admittedly, I'm always concerned of one-sided thinking, or POV that posit only science can/"ought" to "lead the way".

I think any of us who have been diligently, unwaveringly, and lovingly caring for our children at home know "science", the Dr's, therapists, etc. are not the ONLY element/factor leading the way, and literally saving the lives of our children. My d's living life here, right now, is proof and fact to that end.

I think until there is truly a comprehensive, and total inclusion of ALL the data, diligent and vocal work towards the elimination of the isolating and negative stereotypes still being played out by both Dr's/therapists, and society towards ED sufferers, etc.; and the inclusion of equal access to high-quality/trained/covered care along with support for families well after their child has been weight restored, we have still a long way to go.

Yes, I agree, there are many amazing individuals championing the way, wonderful and talented parents like Harriet and Ms Collins are to name a few.

But I do think we need to be clear re Dr's, therapists, IP/OP facilities, etc. that are actually treating- successfully- ED patients. And that they have some clear proof, and statistics, disclosed %'s of relapse rates, etc. on their blanket "good" recommendations or commercialization of their facilities and programs. Jane, the "bad feeling" was not towards Dr LeGrange and Lock, the frustration was directed at Rogers Memorial who hosted the event, and close the community and parents out.

We've been in the so-called leading facilities here in Wisconsin, like Rogers Memorial and Aurora Psych Hosp. And outside of Waukesha Memorial, (which we have not had a chance to investigate, etc.), they are falsely advertising their services, hire and contract out unqualified/trained staff; and hide important factual information from parents re the true nature of what goes on when their children are housed in their programs.

Even worse is their attempt not to have parents observe the program, inquire pertinent information, tour the facility, speak with Dr's/staff, etc.- can you imagine this?

This very outdated way of immediately assuming all parents are to blame for their child's ED, and carrying on treatment programs that isolate an ED patient from their families, unless it's obviously necessary, is the state of the art of ED research and treatment her in Wisconsin. So I do find fault with this system, and rightly so; it's unacceptable.

More passionate, intelligent discourse from ALL sides needs to continue. I have concerns though, that if parents/patients don't keep up or attempt additional pressure for change in both thinking and treatment practices of ED's, that just waiting for the science to lead the way is going to continue to leave many more under the radar, underdiagnosed, hovering near death/relapse; and just giving up.

We can't wait, and can't separate/divide all those involed, but need to incorporate and collaborate with one another, share the wealth of information and knowledge and continue to move forward.

Even with all the strides of "science", research, medications, etc. at the end of this there still needs to be human support and love; all the science in the world cannot replace that vital element.

All the best to you.

Jane said...

Tracey,
I am put of by your combative tone and won't bother to reply to all your specifics. You've assumed quite a bit from my post that simply isn't there.

Tracey~ said...

Oh... and I just wanted to write a note of "thanks!" to everyone for reading and offering your thoughts and support.

Marcella, your comments are like a little fire-cracker- giving me a nice jolt of reaffirmation- merci!

Mary, I do feel empowered as a parent- I just get incredibly frustrated at the lazze-faire attitudes of many re ED's. And I never had thought much about any of this prior to our d being diagnosed with AN. I think many of us feel incredbily charged in wanting to support our kids, getting them back to health and normal day-to-day living- Life. But wow! It can really be a blow, and very limiting when those around you, and those in the medical community you have to rely on are not understanding the ongoing struggle and exhuastion. And finding that support for us as parents, to get the feedback, additional perspective long term. It's incredibly challenging. Our lives have changed so much, almost like we're stuck in some time warp while the rest of the world moves forward.

Carrie, sorry to know that the distance for you is great. This IS really hard for most of us who are wishing to connect with other parents, more inspired by Maudsley and doing home re-feeding. It's very isolating and hard to share experiences or have some common ground with those who really have no clue what you're going through, or perhaps are not looking for the same type of support, etc. Hang in there, keep posting and reaching out.

Gracious thanks to everyone else I have overlooked for all the kind words and support!

Shanti~ Tracey

Tracey~ said...

Jane,

Sorry that you feel this way.

Take care~ Tracey

Harriet Brown said...

Everyone,

Lots of strong feelings on this subject.

It strikes me that eating disorders are not so very different in many ways from other chronic-type illnesses. I know many families grappling with some big issue with their children, whether it's an e.d., autism, depression, learning disabilities, physical impairments, etc. The bottom line is that it is always the parents who have the most at stake with regard to their chile's treatment, recovery, and long-term health.

We can wish and hope and work toward improvements in treatment, more studies, consciousness-raising for the general public. These are all good things. But at the end of the day, we're the ones who love our kids most. The buck stops with us.

Which is why I opened this little can of worms in the first place. I'm giving a lot of thought in my own life to where to put my energies as an advocate and parent.

I don't think there's anything to be gained by blaming. The reality is that treatment is uneven, families have differing levels of access to care, and recovery rates for most treatments are dismal. This isn't so different from other illnesses and treatments. I am grateful personally that my d is recovering from anorexia, that this isn't something we and she will have to deal with every day for the rest of her life.

The question is how can we make it better? Let's put our energies toward creative brainstorming. I bet we can change the world.

marcella said...

Good luck with finding your role Harriet.
There's a lot of work out there to be done. I went to a science lecture on EDs (about which I will blog for myself some day) today. At the end a poor sufferer was in tears of relief at the idea that perhaps this has a genetic component and wasn't all her fault. The lecturers were able to comfort and help her but I just wanted to kick whoever has been treating her (which in our underfunded system may be nobody other than her generalist practice nurse) for not telling her this before.
We can all have a go at reducing that kind of stigma and ignorance whatever our particular stance on treatment facilities and however hard we may be struggling with our own eating disorders or those of loved ones.

Jane said...

Marcella,
Your comment points out so beautifully WHY research is important. People's lives and happiness are at stake. I'll be looking for your blog entry on the lecture : )