You are currently browsing the monthly archive for May 2008.

 

             Interesting use of metaphor…

                       are you taking care of your Earth Suit— I hope so!

            – Bonne Nuit

 

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

 

 

There are few individuals who truly rise to a level of integrity, experience, commitment and compassion when it comes to researching and treating eating disorders that I can honestly say are worthy of note, let alone far too few dedicated and wisely seasoned clinicians available for sufferers and families assisting and caring for loved ones to have equal and affordable access to.   Dr Daniel le Grange at the University of Chicago is most certainly one of those individuals.

For parents who have younger children or adolescents suffering with an eating disorder you are probably already aware how vital early diagnosis and intervention are to restoring your child’s health.  Many families and parents are unfortunately still treated as the “problem” or blamed/shamed into believing that they “caused” their child’s eating disorder, and sometimes, worse yet, doctors don’t even take seriously the early warning signs of eating disordered behaviors as well as weight loss in younger patients and dismiss the parents concerns despite the “highest concentration of most sufferers of Anorexia Nervosa being in the adolescent female population”– time is not on anyone’s side when you delay diagnosis and immediate treatment.

And treatment programs along with many clinicians still leave the family aside and ignored vs being utilized as a vital resource in assisiting and collaborating within helping their child recover, and working with as well as healing the entire family unit.  This makes many of us parents quite irate since we know our children best and were the first to have noticed the drastic changes in our child’s behavior, took initiative in researching treatment options/providers, and then continue to take action, resources and advocate for our children while waiting for many in the medical community and insurance industry to finally wake up and begin implementing true evidence-based treatment strategies that work instead of constantly reinventing the wheel, over and over…

Parents, Families/Partners and Caregivers of Children and Adolescents suffering with this illness please take heart, find continued reassurance, and be re inspired by reading Dr le Grange and Dr Loeb’s Early Intervention in Eating Disorders as well as Dr le Grange’s Treatment Model for Eating Disorders in Children & Adolescents :

 

  • Parents are a RESOURCE in helping the adolescent
  • Most parents CAN help the adolescent
  • Parents have SKILLS to bring to treatment
  • Therapist leverages parental skills and relationships to bring about change
  • FBT-Family Based Therapy is the only evidence-based treatment shown to be efficacious and cost effective

 

On the Centre for Excellence in Eating Disorders (CEED) website, where if you are an Australian native they are also providing FBT and eating disorder treatment study for families free for participants, which they did here in the states at the University of Chicago a few years back.

Some day Eating Disorder Treatment will be this good everywhere — until then, keep fighting the good fight and don’t give up!

-shanti

 

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 

_____

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

-epicself

 

Well I haven’t been blogging to an idealized expectation… but there is good reason– SPRING!  

This time of year is definitely infectious for us.  Things are blooming, the soil is deep, dark, rich and inviting (which reminds me, the compost needs turning)  and I simply can’t resist when the weather beckons and stays as wonderful as it has.  We spend most of our time outdoors when spring and summer arrive so I can only apologize for posting infrequently and sporadically.  And this summer we’ll be either vacationing in India, the Rocky Mountains, or beachin’ it on Big Sur– so even more intermittent rambles, c’est ca!

This weekend is also Chicago’s Green Festival and we’ll be heading out for the party.  Personally I can’t think of a better way of treating the family with some fun, gorgeous weather, great food and extended community company!

Wishing all of you a very Bountiful, Healthy and Happy Summer!

-shanti

                                                    Being an artist

                                     means, not reckoning and counting,

                                             but ripening like the tree

                                          which does not force its sap

                                               and stands confident

                                             in the storms of spring

                                       without the fear that after them

                                              may come no summer

                                             -RAINER MARIA RILKE-

 

By now everyone has read and seen the devastation caused by the earthquake measuring a magnitude of 7.9 in the Sichuan province of China.  We have been holding our breath these past couple of days since dear friends of ours were living and working in China but were extremely fortunate and arrived saftely back home in India. 

Many, many  others are yet to be accounted for, and have not been left untouched by this horrific natural disaster– something of this extent not witnessed in over thirty years.

There are several relief organizations  scrambling to help those who have been affected by this catastrophe, though what’s growing increasingly frustrating is how the local government is really making things difficult for aid-workers to get through and deliver assistance ASAP.

We continue to send our deepest sympathies and heartfelt condolences to all those affected by this tragic event.

-shanti

                                                 “This day is a special day, it is yours

                           Yesterday slipped away, it cannot be filled anymore with meaning

                                                   About tomorrow nothing is known.

                                           But this day, today, is yours, make use of it.

                                                Today you can make someone happy.

                                                      Today you can help another,

                                                This day is a special day, it is yours.

                                                              -INDIAN POEM-

 

All Women in this World are forms of the Goddess

 -Devi Mahatmya 11.6

Wishes for a Very Happy Mother’s Day!

 

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

 

 

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