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… then shouldst have it for gingerbread*.   -William Shakespeare

      * Or in my case fresh carrot cupcakes

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Summer is winding down and it’s been a fantastic couple of months.  Gracious thanks to those of you who continued to email throughout the summer (for almost a month we were too deep in another world to even want access to the internet) with a wealth of supportive and heart-filled thoughts.  I was touched beyond words that can even begin to express my endless appreciation to you all.  And though I didn’t get a chance to respond to everyone in kind as of yet, I just wanted to share, once again how much this has meant to me and our family– merci!**

On another update-note, Drs Daniel le Grange and James Lock will be conducting a one and 1/2 day FBT-Maudsley training targeted towards adolescents with eating disorders in Portland, Maine: September 23-24th.  What a wonderful opportunity to continue to utilize family-based, supportive and evidence backed treatment practices that integrate all those involved within their loved ones’ care and recovery.  Mary Orear, executive director of Mainely Girls is sponsoring this event, for further information click on the highlighted link.

Hope all of you had a restful and recuperative Summer– and looking forward to reconnecting more regularly soon!

-shanti

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The Klarman Family Foundation Grants Program in Eating Disorders Research whose long term goals are to accelerate progress in developing effective treatments for eating disorders has listed their 2008-2010 Award Recipients of outstanding scientists and researchers in the field :

 

  • Wade Berrettini, MD, PhD – University of Pennsylvania – Genome-wide Association Study of Anorexia
  • Catherine Dulac, PhD Harvard University – Genetic & Epigenetic Pathways Underlying the Neural Circuits of Feeding Behavior
  • Guido Frank, MD – University of Colorado Denver – The Brain Reward System Across the Major Eating Disorders & its Relationship to Genotype
  • Angela Guarda, MD – John Hopkins University School of Medicine- Role of the Cannabinoid (CBI) System in Bulimia Nervosa
  • Alvaro Pascual-Leone, MD, PhD – Beth Israel Deaconess Medical Center – The Role of the Right Prefrontal Cortex in Binge Eating Disorder: A Translational Research Study Using Transcranial Magnetic Stimulation (TMS) & Functional Magnetic Resonance Imagery (fMRI)
  • Maribel Rios, PhD – Tufts University School of Medicine – Examination of the Role of Brain-Derived Neurotrophic Factor in Binge Eating Disorder
  • Leslie Vosshall, PhD – The Rockefeller University – Identification of Novel Genes & Circuits in Animal Model of Binge Eating Disorder
  • Jeffrey Zigman, MD, PhD – U.T. Southwestern Medical Center – Mechanism by which Ghrelin & Orexin Defend Against Depression & Anxiety

 

Real scientists and genuine clinicians doing real work to make continued strides towards improved treatments, diagnostic tools, preventative modalities in treating eating disorders more of a reality along with further educating/training the medical community and wider public– CONGRATULATIONS!  Many of us wish you full-speed ahead as well!

-salut

 

 

Vrishabha- the sacred bull of Lord Shiva… or more widely known- Taurus, the Bull reigns this month of May.  Our daughter turns 14 on this May 20th, and she definitely characterizes the nature of the bold, loyal, and very stubborn Taurus!

Before being diagnosed with Anorexia, birthday’s had always been a festive and richly tasting  affair.  And while we’ll continue partaking in this annual delight, it’s still a bit difficult for her to freely enjoy what never took a second guess years past.  She’s committed to challenging herself, though there are days she’s not too happy to do so, and will boldly (envision the Taurus with plumes of smoke flaring from nostrils!) make that clear– well, what were you like at 14, minus an eating disorder? 

I’m forever grateful to those who also remain equally, if not at times more, committed to helping support our daughter in keeping focus upon her recovery.  Recovery is not easy for sufferers, and parents still get  bawked a’ plenty and treated with disdain, misjudgment, and left to the side when there requires a much more encompassing circle to complete for true healing and whole-ness to take place.  And dualistically, sufferers also need their own space, their own pace to regain their true Selves back once nutritionally and weight stabilized– this requires alot of Love, patience, perseverance and sometimes a compassionately coordinated “team” all working together.  It makes me think of the Buddhist practice of mindfulness and the use of “a two-handed practice”:

_____

I can sit in my predicament as a witness, not as a plaintiff or judge: ‘Here I am in this situation and I sit squarely in it and breathe into it.  At the same time, I am aware that I can handle this and get through it without becoming devastated.  I can trust my competence neither to become dramatically overwhelmed nor to be stoically untouched.  This sense of competence frees me from fear, since fear thrives on powerlessness.  I imagine myself holding my predicament in one hand and my power to work with it in the other.  One hand is serenely mindful; one is courageously working.  When I hold both realities this way, I am agreeable to things as they are, and I am doing all I can to change them for the better as well.”   -D. Richo 

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This resonates with me deeply as a parent and the complexities illnesses like eating disorders present to us.  Now if only we can collectively and universally have provided the very best in evidence-based, highest standard of quality care of treating eating disorders and supporting families in such a comprehensively and equally accessible manner– that would be my wish!

Our daughter has many “wishes” and dreams she wants to pursue.  We simply want to wish her a very Happy Birthday, happy 14th Year, to continued Health and vitality… and to a courageous healthy-stubborn side that can be an anchor for her when difficulties and stress arise.  Knowing she can reach out and ask for help, she’s worth every ounce of her hard work on the road to recovery she has traveled thus far, and that we Love her very, very much!

-XOXO Mom*Dad*Big’Sis

 

This is a day of promise –
Of hopefulness, laughter, and cheer,
For this is a day of remembering
The good things that happened all year –
A day for reflecting on memories
Shared with friends and with family, too,
Who were so much a part
of the joys in your heart
And the love that you felt
all year through-
This is a day of promise
Of the beauty and warmth life can hold,
And of new dreams to dream
and more love to share
Through a year that’s about to unfold.

-Emily Matthews

 

Most of us realize that we need “fat” not only in our diet, but within our bodies– I say most since when you have an eating disorder, know someone with an ED, or care for someone suffering with this illness, specifically anorexia nervosa, which is hallmarked by the intense fear of gaining weight, this is a very difficult truth to swallow as well as visually accept within ones’ physical body.  

There are also some studies that suggest for some this “fear” can be a precusor to eating disorders  among the array of environmental, behavioral influences as well as genetic and/or biochemical predeterminers that scientists are still compiling and discovering that can leave some individuals much more susceptible than others to either severe eating disordered behavior, EDNOS, or a severe diagnosed eating disorder that requires serious and comprehensive treatment. 

What’s also intriguing is the work by researchers continuing to unfold in evolutionary biology, genetic imprinting, and epigenetic inheritance which I’m certain there are correlations within these findings and eating disorders that have yet to be fully available and utilized, but may be able to provide us with a much more inclusive picture behind the illness and how to improve prevention and treatment.

There was a recent study highlighting the benefits (mostly catching everyone’s eye with the glorification of our ever evolving rump, or as writer Debra Dikerson slammed in Salon.com last year about mainstreaming “Gi-normous butts”) of subcutaneous fat, which produces hormones known as adipokines found to boost metabolism (of course, I’m assuming this study will also fuel the weight-loss industry and war-on-obesity too) found in the booty area as well as belly and showing to be protective against type2 diabetes, but also reaffirming the adage that “diets don’t work” and briefly explains why this is part of the reason it’s difficult to keep that weight off once lost; and that our fat cells are set during adolescence and don’t decrease, but do actually expand in size.   

And while I don’t embrace the the good/bad dichotomous thinking and categorization of really anything when it comes to our daily living and Life– you tend to find things more in shades of gray or muted with other colors vs just a pigment of one– the study is looking at two types of fat: subcutaneous and visceral , and where they are found within the body.  Subcutaneous tends to be in the booty and stomach area, and has more benefits vs visceral, which tends to be the gunk blocking arteries, causing damage to organs– sorry to say you’re bad visceral, or maybe scientists just haven’t fully found out what you’re doing and why you are getting such a bad wrap. 

Another study that continues in similar dialogue and highlights the complications of metabolic syndrome and that this can be triggered by overeating, which is correlated with weight gain, especially if done consecutively over a sustained period of time, and makes me wonder about endocannabinoids and their role cause/effect in obesity  and how this, if at all correlates.  The study also points to our fat cells being set during adolescence,  but Dr Stephen O’Rahilly of Cambridge remains unconvinced, and isn’t prescribing to this determination just yet.

Maybe another more basic message to keep at forefront is that it’s not nice to fool with Mother Nature– she rises up with a vengeance.  Our bodies have evolved over time and there is inherit wisdom to what we carry around with us everyday.

-Love Thyself

 

While I’m playing with WP Themes -my creative side itches- I’ve been curious what other parents and those who have found their path towards healing, recovery and well being from their eating disorder find gives them greatest support and sustains them throughout? At your most difficult times, what has buoyed and held you steady, lifted you up and got you through (like my friend Ganesha up there)? 

Do you wish some things could have been done better in hindsight, wished clinicians, treatment providers, community resources, insurance, etc. could have known perhaps more than you, practicing with up-to-date, evidenced-based research and data vs rehashing false and painful stereotypes that can keep a family from getting the best care possible? And that  everyone worked more as a cohesive whole vs fragmented, inconsistent, and leaving too many gaps for uncertainty and misunderstanding– or worse barely any informative communication or basic follow up to keep focus on the best methods towards recovery and support?

And if you were/are a parent(s), caregivers, extended-family, siblings do you wish there would have been services that encompassed and included the entire family, and not just for weekly family therapy sessions, the once a month “Family & Friends” events held at treatment centers.  But further additional healing and supportive measures like what is comprised in most respite centers/facilities and typically standard for family members when a child has cancer, or any other major life-threatening illness. 

All of us know that ED’s are potentially life-threatening if proper treatment and nutritional support are not addressed, and the sooner diagnosis is made and intelligent, comprehensive action taken, the better the chances recovery can be, and less relapsing and monumental expenses for the revolving door of IP, OP, residential, IOP, etc. care.

Being a parent of an adolescent with an ED, there are unique aspects to what parents and family members need, your life and “time” seem to come to complete stops and starts depending on where the progression of the illness may be, how many extra hands there are to pitch in when you need time to take care of yourself, take care of other siblings, reconnect with spouses, get some perspective, and to keep centered and strong. 

If I were to draw a graph of how our family has progressed through our daughter’s illness, it would have some deep dips and high escalations, and many dotted straight lines– but not always clearly defined and consistent (thinking about this makes me want to create just such a map/graph!)  Sometimes things seem to just “click” and things move forward without much ado; but there are other times when it seems the cyclone of ED can just demolish the very health and Life of an entire household, leaving pulverized rubble and ruin that needs the utmost and gentlest of care and compassion– those are the moments when all your resources get pulled together and you roll up your sleeves and get down to business– you take action and you may find setbacks galore, but you also find incredible inner resilience, Hope, courage and more Love than you ever realized was always there. 

Moments like these can also be some of the most magnificent and humbling of points within our human experience …

 I feel a deep human need to collectively share these experiences, swap stories- like sharing a recipe!- connect with others who “get it” and aren’t going to be dismissive, discourteous, judgmental or even worse, think I’m a bit over-the-top… off my rocker… box ‘o crack ‘o jack, etc. 

And I think if it weren’t for the Internet of collective voices, fellow parental-comraderie and individuals such as an incredible Mom who hosts a forum for parents to find one another, along with so many of you whom I’ve met virtual-via email, your websites/blogs, etc. and found such amazing insight and resolve into this illness– I do feel I would have felt much more isolated and possibly a bit more despairing (I say a bit since my Finnish ancestry is laced with “SISU” = strength… so this would not have lasted long) but it also points to the reality of the importance to support and encourage one another through the recovery and healing process within eating disorders.  To make certain adequate treatment is delivered, proper support and resources are available in all demographics. 

Change is still quite snail-paced within ED’s, so I think our collective voices and efforts however big or small DO matter and make a difference.

Now if only I could get some of the ladoos (Indian sweet) that Ganesha is holding… my rant would be complete.

-shanti

 

 

 

I love how the birth of International No Diet Day began “from a picnic in Mary’s living room” in the early ’90’s and fertilized it’s magnitude world-wide.  Ms Evans-Young is herself a recovered anorexic and wrote the book Diet Breaking: Having it all Without Having to Diet and it couldn’t be a better time than now to let the message sink in– deep and with reflection.

Largesse gives the background on the term: size esteem  which was initially coined by Richard Stimson, husband to a contributing director/writer at the site, Karen Stimson who explains it perfectly:

– Feeling acceptance of, respect for, and pride in one’s body, whatever its size or shape

But I like this analogy even more highlighted by Cheri Erdman EdD who wrote the book Live Large! and thought about it as a simple yet poignant equation:  Size Acceptance + Self Esteem = SIZE ESTEEM

Either way you think about it, the insanity of dieting, wanting to force our bodies to be a size/shape it was not genetically determined to be– and thankfully so for the beautiful variety of shapes, sizes, colors, we all add to the collage of life, is quite dubious. 

It’s even further magnified when you or a loved one suffer from an eating disorder and are trying to regain your health and follow through with recovery and maintaining wellness in a seemingly endless fat-phobic, diet-crazed, fashion-consumed environment.  Our daughter at times can take on this incessant self-doubt and accusational inquiries about why she has to eat what she has to when others, her classmates, etc. eat less than she does and are constantly discussing “fat” laden topics— it’s enough to make anyone go a little bonkers.  Advertisers, marketing, the health ins field, even health care (hey, let’s face it– those mega-million dollar hospitals that now look more like shopping malls want  to treat the ill business) and the all time winner: the diet industry.

Stuffed and Starved is a title from researcher Raj Patel more about food prices, the global-glut, etc. but I had to think about this a little bit more this morning how it really ties into so many other layers of Life– and will be worth dissecting and playing off the similar as well as dissimilar dualities we can only pretend don’t exist, or just think is someone else’s “problem” to fix, get over, medicate– like the cliched remark I’ve heard countless times since our daughter was diagnosed with anorexia- “why doesn’t she just eat?!”, then the instant turn against parents when our children don’t eat = it’s your fault, you did something “wrong”, etc.

Yes, INDD is a day we find relative and meaningful in our family.  And with the weather reaching low 70’s, sun shining– I think a picnic is just what we’ll do to celebrate this day!

-shanti

         

 

Some incredible individuals and parent advocates have been hard at work the past two days in Washington working with legislators on Capital Hill for the annual Eating Disorders Coalition Lobby Day to push forth further measures and legislation in the continuation to further progress within treatment, research, prevention and education of eating disorders. 

This is vital and necessary work.  I for one am so very grateful, since I was not able to attend, for all of these individuals who have committed themselves towards improving the lives of those affected by this devastating illness and the families that are doing so much of this work solo, without much support, treatment resources, and clinicians adequately trained to best help their loves ones. 

Thank you EDC and its sponsors, Ms Laura Collins— you are the best!

 

Continued studies, most recently published by Dr Mark Zimmerman for Methods to Improve Diagnostic Assessment and Services (MIDAS), and additional colleagues of both Rhode Island Hospital and Brown University, indicate that the current DSM-IV lacks adequate “diagnostic criteria for eating disorders”, and that “researchers recommend a broadening of the criteria” since currently only anorexia and bulimia are “officially recognized and formally defined”.

Makes definite sense.  Especially since DSM-IV was published back in 1994, and in reading the current DSM-V “white papers” , “DSM definitions are virtually devoid of biology, despite a large body of research that indicates a neurological basis for most mental disorders”.  And that for over the past ten to fifteen years, there has been a steady increase of research and findings developed within eating disorders expanding beyond just AN and BN, but also EDNOS (Eating Disorder Not Otherwise Specified) which counts for “more than half of the patients in treatment centers”, as well as Binge Eating, COE (Compulsive Over-Eating), and other “subthreshold variants” that clearly expand the scope of eating disorder symptoms and diagnosis.

From what the DSM-V timeline indicates, this much needed and updated manual will be published sometime in 2011, which seems like an eternity for many of us already too familiar with the complexity of eating disorders and more often inadequate care/treatment of our loved ones. 

So it’s encouraging to see the continued efforts and commitment of researchers and clinicians in the trenches (along with the rest of us!) collecting the data, and analyzing the results for peer review, publication, and improved teaching/training- which ultimately leads to better treatment and recovery options for those in need.

… I always say, especially when it comes to ED’s and medication- specifically anitdepressants and children/adolescents. 

It’s a call that I personally feel many clinicians make way too early before steady gains in weight, and full nutrition have been sufficiently addressed, and this takes time.  As parents, we see a significant change in mood with increased nutrition, as well as the opposite when our children are not eating enough or metabolizing properly during refeeding and recovery. 

Of course this will be an intimately personal and individualized decision, and antidepressants, without a doubt, have helped countless numbers of inividuals from seemingly endless and needless suffering. 

And you would want to have a physician who would have all the up to date, accurate, and forthright information in helping you make the best decision possible for your child, but after reading Dr Turner’s published report/study as well as the New England Journal of Medicine’s abstract about “selective reporting and clinical trials”, and “efficacy overstated for antidepressants” I’m convinced it’s vital to continue scrutinizing, as well as reseaching the use of antidepressants within the treatment of ED’s; and question why some clincians seem a tad overzealous to prescribe them.

And as some counterbalance, not completely overlooking how antidepressants have assisted many, CEO David Shern of Mental Health America shared a brief response.

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