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… 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
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
“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!
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.