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EOEDs

 

… it’s not “just a phase”.

 

Potentially life threatening medical complications are ‘common’ in children affected by early onset eating disorders (EOEDs), a study reported in the Medical Journal of Australia has found.

 The first prospective national study of EOEDs also revealed major limitations in current diagnostic criteria, possible missed diagnoses and a need for better education of health professionals. The study examined data from 101 cases of EOEDs in children aged five to 13 years, and found that 78% were hospitalised with an average length of stay of almost 25 days.

Study co-author and leading child psychologist Dr Sloane Madden, from Westmead Children’s Hospital, said the results show younger children with EOEDs are presenting with severe disease. “Only 37% of inpatients in the study met the current diagnostic criteria for anorexia nervosa, yet 61% had potentially life threatening complications of malnutrition and only 51 % met the weight criteria,” Dr Madden said. “This suggests the current criteria for diagnosing anorexia nervosa in young children are limited.”

An editorial on the study in the same edition of the MJA highlighted that about a quarter of cases in the study were boys. Editorial author, Foundation Chair of Mental Health at the University of Western Sydney’s School of Medicine, Professor Phillipa Hay, said “The relatively high proportion of younger boys with EOEDs contrasts with men accounting for about one in ten adult cases of anorexia nervosa and bulimia nervosa,” Professor Hay said. “More research is needed, but the work by Madden and colleagues supports the hypothesis that EOEDs may differ in important ways, including sex distribution and course, from eating disorders with onset in adolescence and adulthood. “It is imperative that research attention is now directed towards understanding why such young children are developing severe eating disorders and how effective identification and treatment can be targeted earlier.”

-SourceMedical Journal of Australia

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virtaka

 

Facing the bluntness of reality is the highest form of

sanity and enlightened vision… Devotion proceeds

through various stages of unmasking until we reach

the point of seeing the world directly and simply

without imposing our fabrications… There may

be a sense of being lost or exposed, a sense of vulnerability.

That is simply a sign that ego is losing its grip

on its territory; it is not a threat.

 

-Chogyam Trungpa Rinpoche

holi

This month is such a busy month… I’m very blessed and so very happy that I’ve sold two paintings (not current work, but nonetheless- yeah!) and it was a carefree act on my end, thinking nothing would move someone to be so compelled for work that honestly doesn’t resonate for me personally right now– but all good!

Easter was nice, we are a culturally diverse family (hubby from India) so we partake in other various festivals and events, Holi (see above) being one this month too– my birthday is coming up (not telling how many candles- tsk!) and having our daughter home from residential after nearly three months of treatment is no light lot.

I love spring! New green shoots pushing forth from the ground– and the snow is finally melting here- yippee! New life, new beginnings… change.

And while our daughter is definitely on her road to recovery, this is not a easy road for her to travel– she still needs lots of love, encouragement and support.  She is also quite young, so the decision to “just do it” and fully connect both physically and intellectually to what has taken place over the past year is not all there for her to wade through and have immediate light-bulb moments and decide that today is the day she knows ED is behind her- for good.  She herself has openly admitted she “is not ready” to say ado to her tango with ED– not yet.

She has however been slowly “emptying” and “letting go” of ED– one day at a time.  A deep breath in and a very long exhale out…

“What will become of me if I let go of my eating disorder?”

“How many times have you tried to let go by hanging on?”

It doesn’t work…  and it doesn’t happen all at once.  One day, one step, one mouthful at a time.

Our daughter did something incredibly powerful a few weeks back.  She wrote a “good-bye” letter to ED and she opened herself up to share this moving note:

         ED,

      I need to leave you.  You have made me do some relapses and only made me think about shapes, sizes or weights.  I feel really bad for leaving you but it’s the only way I can stay on the path of recovery and be able to achieve my goals in life.  I will miss you a lot. 

You have helped clear my feeling of stress out and do something that makes me feel comfortable (restrict).  You have really hurt me.  My friends and family have been here supporting me, and it seems that you want to shove my parents away.  You also have not made me be able to hang out with my friends and then just isolate. 

ED, I plan to take care of myself and to listen to myself more than YOU.  I plan to become a ballet dancer and veterinarian, and enjoy my life and live my dreams.  You may come back to me when I look into the mirror but I won’t let you take my passions away.

                        Good-bye ED-

Indeed.  With the snow continuing to melt, the extended light of the days and the darkness of winter slowly turning more and more towards spring, I feel a renewed sense of Hope and Strength for our daughter’s continued striving forward towards full health, full Life.  There will be days, as there already are, that will challenge and the proverbial two steps forward, three-five steps back… but she’ll get there and we’re all right there behind her cheering her on!

Happy Spring- Happy Holi-Hai!

 

St Urho                     

“Heinasirkka-heinasirkka mene taalta hiiteen!”

          (Grasshopper-grasshopper go away!)

Having Finnish ancestral blood-lines, we take this man-made legend with both some celebratory flare as well as good-natured humor.  Though when I was growing up, St Urho was presented more as a fact– I actually believed there was a real St Urho chasing those grasshoppers out of the vineyards!

And I do remember drinking the grape juice (now we’ve switched to framboise)  having bowls of fish soup (not too memorable taste-wise, but I’ve revised this recipe accordingly throughout the years) wearing something purple, and having a sense of pride in our family’s heritage (rarely did anyone I know growing up have any idea about Finnish culture, let alone being a fellow Finn) ; and how my great-grandparents came to the US, fleeing Soviet conflict to make a better life imbued with Sisu strength.  Imagine too, to my surprise and sense of fellow-kinship when I found out one of my teacher’s was also Finnish and knew this St Urho character, even going so far as to wear the green (representing the grape leaves) and purple and taking the time during chemistry class to shed a little cultural legend to the day!

So you may be wondering what I’m going on about… what does this have to do with eating disorders, has this woman lost her mind completely, gone off on a tangent of sorts? Well yes, and no…

Our daughter has been battling anorexia nervosa since last year, and as most families with young adolescents struggling with ED know- -it’s definitely a challenge, sometimes requiring every last reserve, every ounce of your sanity, energy, finances, etc. to help pull your child through the black hole of this life-threatening illness towards supporting, loving and helping them find their way back to Life, to Hope and Healing.  And it is possible for your child to find their way back towards full recovery, in whatever form that may take that fully supports, treats and assists your child and family best to getting the best care possible.  

Many times as parents when confronted with the diagnosis of an eating disorder, after we clear the fog of our own lack of knowledge having not experienced the illness first hand, and then educating ourselves, we may also feel conflicted by all the advice of those while well-meaning, or touting as “experts”cannot ultimately speak for our individual circumstances and personal family needs, preferences, values and choices.  And as parents, we have the right to make those fully-informed decisions knowing our child best, and not feeling coerced, manipulated, brow-beaten or given endless heavy-handed black/white-right/wrong ways of fighting this illness and finding the best treatment options for our child– whatever it takes.  You, as the parent, will know what is best for your child and should not have to feel guilty or at fault, or having failed , or less of a parent in any way for your choices towards making treatment possible and suiting your individual childs’ needs as well as that of your family.   

However, not making a decision or acting towards taking a stand against your childs’ eating disorder/illness will only dig that black hole even deeper, and really no one suffering with this illness or their families should be alone in finding help and the care they deserve.   There is help, support and resources available, but since eating disorders are still relatively incoherently and inconsistently treated, and in many instances not adequately covered by insurance for long-term outpatient treatment/services, let alone intensive residential treatment options when necessary, we as parents must take a stand, advocate for our children (and ultimately all those suffering from an eating disorder) and be the “squeaky wheel” in our child’s treatment plan. 

Even when your child is at a “safe” stage within his/her recovery, as parents we know there is no looking back– our lives have profoundly changed, ED is not a welcome guest, yet at your childs’ most vulnerable moments, the disorder will work so damn hard at trying to stay and undermine progress– Health and Recovery.  Recovery takes time, patience and perseverance.  It requires us as parents to listen, be present, and support our children yet also allowing them to take ownership of this process without being left on their own, and with ED’s it’s a complex balancing act because we love our children and want to keep them safe, but at the same time cannot force the process on our terms, or by what we feel when they are feeling something completely other– recovery does have to be ultimately theirs, they will own it, and feel the triumph of success everytime ED rears it’s ugly head and they can face these challenges with courage, resilience and continued strength.  Slowly dismantling this pernicious illness, as Lee Wolfe Blum pointedly states: “protect your recovery”…. like the patron St Urho, chasing after either the original mythical frogs or later the grasshoppers; I think there are a couple of translations that have the word “hell” added to the chant.   

We Finns celebrate this day every year at this time in March, (some corners of the globe even have a dance ritual they gather together to enjoy– very interesting!) but this year something about St Urho’s Day brought an even more striking meaning to me personally with his image holding up the trident with a captured grasshopper, I was instantly struck by the power of this statue/image minus the grasshopper(s):  “ED- ED, get the hell out!”

-May the spirit of this St Urho’s Day be with you all!

eclipse

I find Eating By The Light Of The Moon to be a fitting thought for the day…

                            Your body is precious.

                   It is your vehicle for awakening,

                               treat it with care.

                                    -BUDDHA

                              

Since our daughter was diagnosed with anorexia almost a year ago this month, I wanted to start to put together, however chaotically at the moment, a journal of our experiences and share them in some manner that can add to the collective of additional perspectives, up to date evidence-based research/data within ED’s; and their effects upon the family, treatment strategies, and improved follow up care towards the goal of full recovery with the least amount of debilitating relaspe, IP/residential and/or hospitalization..  

More importantly, I feel parents can be a locus of change for the medical community, insurance companies, and also a significant support network for eachother.  And that fighting this devastating illness does not have to sentence parents, or the sufferers to a path of isolation, shame, or guilt since many treatment standards, clinicians, and society as a whole still have several outdated and erroneous stereotypes and practices that are impeding continued progress forward.

I do also think there are several reasons, as well as clinicians (though still too few practicing in this field and easily accessible) to keep hope alive and remain optimistic (as hard as that can indeed be at times) that recovery is possible, and that parents should feel empowered to take an active and loving role in their child’s recovery process. 

Shanti-  T.Mere 

End Health Discrimination
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