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I’ve been away so sorry for the delay in replying to comments and emails. I have just responded now to the lovely responses I have found in my comments and email.

My emails reminding me about comments also seems to have stopped turning up (gotta love technology) so that hasn’t helped either.

Although I don’t post as much now, my email is always open and I will always respond to any letters. And once I sort out the commenting issue on posts, I’ll be quicker at responding there too.

 

 

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I’ve written in brief about heart problems with anorexia, but it’s any eating disorder that can also produce severe heart problems. This is the hidden killer for many. I found that not knowing Sophie’s true heart rate until she was in hospital to be a very critical issue. The GP and others treating her before her first hospital admission, didn’t mention heart problems either. Nor did they do a full check on heart rate – lying down, sitting, standing. There was never a moment that they measured drop rate. They also never mentioned the heart rate overnight, when it normally drops. For those with anorexia this is very very critical. Many have their heart rate drop into emergency intensive care zones during this time and never know it. It happened to us and thousands of others. The scary side – heart failure – and not even knowing that it was getting the heart was getting that low.

As we coasted towards our second hospital admission, this time I was more than aware. Our specialist doctor did the proper heart rate tests, but I pushed our GP to do the same (and still struggled for them to understand how important this was). I also took Sophie’s heart rate late at night and in the early morning before she got up. It gave me a very real idea of what her heart was dropping to overnight, it gave me more mileage with the GP and getting her pushed onto the critical admission list.

The article below also outlines the different types of heart problems that arise with eating disorders. I didn’t know that last two and frankly, we should all be told these things regardless when we are in treatment care. I’ve put just the heart information here, but the full article that covers more general information about anorexia is available: http://www.everydayhealth.com/columns/jared-bunch-rhythm-of-life/for-both-men-and-women-anorexia-nervosa-is-increasing-and-the-effects-on-the-heart-can-be-severe/

Anorexia and the Heart

Here are four broad patterns in which the heart is affected with both short- and long-term exposure to anorexia nervosa:

1. Loss of heart muscle. Just like the skeletal muscles in your arms and legs that you can see, the heart muscle loses mass. In patients with longstanding anorexia the heart walls thin and weaken. The heart chambers then enlarge. The pumping function of the heart declines and with it, blood pressure falls. Organs that are very sensitive to blood pressure and blood flow such as the kidneys and liver then begin to fail. Fortunately with weight gain and replenishment of essential vitamins and minerals the heart muscle often recovers.

2. Abnormal heart rhythms. A number of abnormal heart rhythms can occur with anorexia. One is that the heart beats slowly, a pattern called bradycardia. This is a particular problem in people who have weak heart muscles. Normally if the heart function weakens and less blood is pumped with each beat, the heart has to increase the number of beats per minute to maintain the same average blood flow. With anorexia, if the energy stores in the heart are so depleted that the heart rhythm cannot increase to compensate for a weakened heart failure, blood pressure falls more quickly and organ failure develops rapidly.

Another concern is fast abnormal heart rhythms. People tend to be most sensitive to these types of rhythms if they follow a pattern of binge eating and purging. This can result in dangerous shifts and loss of body electrolytes such as sodium, potassium, and magnesium. The electrical aspects of the heart that create heartbeats are critically dependent on these electrolytes. When they fall, chaotic electrical patterns can develop in the lower heart chambers that result in cardiac arrest.

3. Loss of the autonomic regulation of the heart and blood vessels. Our bodies do a lot of things that we are unaware of to help us function. For example, the simple act of sitting or standing requires multiple complex changes in the body. Among these are constricting of the blood vessels to raise blood pressure, and a subtle elevation of the heart rate and contractility of the heart. In people with anorexia these reflexes can be impaired or lost. This can result in profound drops in blood pressure when attempting to sit, stand, or walk. People with anorexia can experience severe lightheadedness, fainting spells, and even cognitive changes.

4. Mitral valve prolapse. The heart valve between the upper and lower chambers on the left side of the heart is called the mitral valve. It closes when the lower heart chamber contracts to pump blood throughout the body. The changes in the heart muscle mass compared the structure of the heart valve can affect the closing of the valve. The mitral valve then can close less tightly and prolapse into the upper heart chamber. In people with anorexia about 20 percent will have mitral valve prolapse. Unfortunately, the heart valve condition appears to persist even after weight gain.

I am seeing more patients with anorexia in my clinic. To a physician, low body weight and in particular the pattern of muscle loss are noticeable signs. Most of my patients with anorexia eat a low to low-normal calorie content in a day, but then exercise excessively. Despite being very underweight they still discuss weight loss goals they hope to attain. More recently, I have encountered a surge in misuse of “natural” therapies to cleanse or purge the colon or work as a diuretic. These therapies are every bit as dangerous when misused as prescription laxatives and diuretics, and can lead to severe mineral and electrolyte depletion a

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The Feed

Every year around this time, the back-to-school bonanza begins. Stationery stores are stock-piled with school supplies. Bedding and home stores are advertising all the latest dorm room designs. And clothing stores are clamoring about ways to refresh a fall wardrobe.

Photo Credit: Creative Commons by emerille

However, if your summer involved intensive eating disorder treatment, you may have some other important back-to-school concerns. Here are a few of the worries commonly voiced by people with eating disorders as they approach the start of a new school year:

Will people notice changes in my eating or my appearance?

The simple, yet perhaps unsatisfying, answer is, “it depends.” Many people are consumed with their own worries, and therefore may not be as acutely aware of the changes that you’ve made as you are.

That said, the friends (or teammates) who know you well – those with whom you were eating regularly

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All of these are early signs, none of them alone mean much, you may see any combination of them. Most of these comments and behaviours can seem innocent, teenage behaviour. Mostly though they are out of character for your child. They will be a departure from their normal personality and family routines. Watch, ask, challenge. Don’t let any of these go unnoticed or uncommented about. Keep watching, keep asking, keep challenging.

If you do, if you have any suspicion at all, bring your child to the doctor and insist, insist and keep insisting.

early signs of an eating disorderThings they say

I just want to eat healthier
I want to be a vegetarian
My stomach hurts
I am not hungry
I already ate
I think I am allergic to….
(foods they never had an issue before or diagnosed allergy)
I don’t eat this
This is not organic or gmo
I just don’t like this any more
I am so sick
What’s in this food (nutrients)

Things they do

Disappearing after meals
Checking out the nutrition labels
Increased exercise
Pushing food around plate
Cutting food in tiny pieces
Chewing food forever
Stop making plans with friends
Taking forever to make it to the table for meals
Frequent showers (especially after meals)
Spending forever in the bathroom after shower – body checking
Sleeping at meals time
Watching cooking shows, reading cook books none stop
Cooking/baking obsessively without eating it
Going to the grocery store and reading all labels
Buying expensive foods that go uneaten
Frequent body stretching and movement
Wearing baggy clothing (despite temperature)
Refusing to go out with friends if meals are involved
Writing calorie/meal/fitness journals
Taking a lot of body checking selfies
Picking fights at meals so they can be sent to room, or storm out
Eating only low calorie foods
Spitting food into napkins
Having to exercise even when injured or sick
Spitting food into napkins
Having to exercise even when injured or sick
Notice the calories in everything
Dissect the ingredients of a meal
Interested in high metabolism foods
Lots of gum chewing
Taking ice baths
Very emotional response if any of the above is mentioned
Skin picking

Things you can observe

Over dressed in summer, under dressed in winter
Blood shot eyes after meals
Social withdrawal
Unnatural seating positions
Constant foul mood especially at meal times
Weight decrease – A child should never ever lose weight
Anxious, distracted, avoidant behaviour at school
If pets, notice if the dog/cat is seating closer to your child
Cats will gravitate to someone with an illness
Dogs will gravitate for food being dropped
Increased perfectionism, rigidity, ritualistic behaviour
Increase in anxiety, depression, OCD if these are already part of your child’s character
Cold hands and feet
Bad breath or personal smell
Small sores on body which take a long time to heal and can bruise easy
Blue finger nails
Obsessive body checking
Thinning and failing hair
Soft down on skin particularly chest, neck and upper back
Loss of menstruation
Panic attacks out of nowhere
Weight gain despite exercise due to B/P or binging
House plumbing issues from: purged food, hair lumps.

With thanks to The Dirty Laundry Project with additions from me.

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Re blogged with permission from: http://internationaleatingdisorderadvocacy.blogspot.com.au/2015/06/letter-to-butterfly-foundation.html

Dear Ms. Morgan and the Butterfly Foundation Team,

 Thank you for responding to our request for dialogue. As mentioned in our initial conversation, International Eating Disorder Action (IEDAction) is a growing collective of over 2000 parents, carers and survivors. Our goals are to correct misinformation about eating disorders in the media and the general population, among healthcare systems and insurers and with eating disorders advocacy and treatment groups themselves. We also advocate for evidence-based systems and treatment providers and to include support for research, training of providers, accreditation of services and expansion of early identification and evidence-based treatment approaches including family based treatment.  

Prior to IEDAction’s establishment, many of us were the target audience for efforts such as the Butterfly Foundations “Dis” campaign. Unfortunately such campaigns did not improve our understanding of eating disorders or access to treatment. Instead we now realize these campaigns trivialize eating disorders and in fact undermine efforts to ensure correct information about these life-threatening illnesses is broadly disseminated and they potentially undermine our collective efforts toward acomprehensive national response; hence our concern with the recent Butterfly Foundation campaign.  

We appreciate your desire to improve access to treatment and care services. However we remain concerned that Butterfly continues to conflate body image issues with the real needs of the eating disorder community. It is our stancethat conflating societally-normed behaviors such as disordered eating and negative body image with the serious genetic, biological, psychosocial illnesses that are eating disorders is damaging. While we understand that Butterfly includes Body Image as part of its overall mission and we support promoting positive body image as a universal goal, promoting it as eating disorder prevention is not supported by research.

Our position is that body image and “feel good” campaigns should not be intermixed with true advocacy about eating disorders, and that such campaigns diminish the very real daily struggles of those impacted. We feel that an eating disorder organization such as Butterfly Foundation should focus on the priority needs articulated by the affected population. This includes a) public education on eating disorders with accurate information including the fact that EDs are biologically based mental illnesses with strong genetic influence; b) focus on ensuring diagnostic and treatment services; c) decreasing stigma around eating disorders by promoting the recently released by the Academy of Eating Disorders Nine Truths About Eating Disorders. (AED, 2015).

If the only information the general population receivedabout eating disorders came from the Butterfly Foundation they might very well believe that the main factor for developing an eating disorder is negative body image. We know that this is not true. We also know that heritability for eating disorders is high – 60% or more cases have genetic underpinnings. (Bulik, ICED Boston, 2015). To date there is no scientific evidence to suggest eating disorders are caused by body image concerns. 

While many people have body dissatisfaction issues and disordered eating, very few develop clinical eating disorders. “Love your body” and “don’t dis on appearance” may be great campaigns for the welfare of the general public, these messages—especially presented by an eating disorder organization—do nothing to further public understanding of eating disorders being genetic, biological brain-based illnesses. 

Campaigns such as yours are undertaken with good intentions; however as the affected community we strongly feel they do more harm than good. They detract from asking governments to ensure their mental health budgets are adequate to treat eating disorders. They detract from our requests to medical and nursing schools to ensure adequate pre-service training for eating disorders diagnosis and treatment. They undermine efforts to ensure legislation for eating disorders funding and treatment services. And they are not meeting our needs. 

We do not deny that there are sociocultural and psychological components of the illness. However, factors being promoted in the current Butterfly Foundation awareness campaign give the impression that body image issues are the cause of eating disorders rather than a symptom of the disorder.

Additionally, these body image campaigns make a false promise that eating disorders are preventable. From a research and statistics standpoint, first-degree prevention efforts (preventing someone in the general public from acquiring an eating disorder) are not feasible (Cuiipers P, 2003). Indeed some school-based ‘healthy eating’ initiatives have had deleterious effects (Pinhas, et al, 2013; Carter et al, 1997). To date there have been no studies to prove primary prevention for eating disorders is effective or even possible as was recently affirmed in the National Eating Disorders Collaboration Bulletin E-Bulletin #283. (NEDA, 2014).

According to a recent analysis Bailey, et al note “Research shows that current programs generally result in an increased knowledge and awareness of public presentations of beauty, body image and eating disorders, but do not necessarily effectively decrease risk factors or change personal attitudes or eating pathology Prevention and intervention strategies continue undergo further development, research and evaluation to effectively motivate behavioural and attitudinal change in young people.” (Bailey et al, 2014).

We are concerned that the “DIS” campaign perpetuates a myth that if you and your family do NOT buy into a “thin” or “looks-based” culture then you are safe from developing an eating disorder. That’s simply not true. People don’t care about funding what will never affect them. We are gravely concerned that perpetuating societal misunderstanding that eating disorders are about body image problems will hasnegative impact on treatment and research funding.  

 As you stated in your email, eating disorders are grossly underfunded and access to treatment is problematic, all the while creating a huge economic burden. We vehemently agree and would love to partner with you to change that. 

We are happy to consult with you and play a role in helping to develop your strategy and future efforts. We have many Australian members who would be pleased to engage with you to bring the movement forward to facilitate much-needed progress in education and treatment services to the many affected and would like for you to consider an advisory committee that can provide feedback and influence the content of future awareness and fundraising campaigns.

Best regards,

International Eating Disorder Action

Eating Disorder Parent Support

Aussie Support Group for Parents of Children with an Eating Disorder

The Dirty Laundry Project

Beating Eating Disorders 

References

Bailey AP, Parker AG, Colautti LA, Hart LM, Liu P, Hetrick SE. Mapping the evidence for the prevention and treatment of eating disorders in young people. Journal of eating disorders. 2014;2:5. 

Bulik, C. International Conference on Eating Disorders, Academy for Eating Disorders, Plenary Presentation, Boston, Mass. 2015.

Cuijpers P. Examining the Effects of Prevention Programs on the Incidence of New Cases of Mental Disorders: The Lack of Statistical Power. American Journal of Psychiatry.2003; 160 (8): 1385-1391

National Eating Disorders Collaboration Bulletin E-Bulletin #283. http://www.nedc.com.au/e-bulletin-number-twenty-eight#article-one, 2014.

Pinhas L, McVet G, Walker K, Katzman D, Collier S. Trading health for a healthy weight: The unchartered side of healthy weights initiatives. Eating Disorders. 2013; 21 (2): 109-116. 

Press Release: AED Releases Nine Truths About Eating Disorders. (n.d.). Retrieved June 8, 2015, from http://www.aedweb.org/web/index.php/25-press-releases/163-press-release-aed-releases-nine-truths-about-eating-disorders?quot;= 

Carter, J. C., Stewart, D. A., Dunn, V. J. and Fairburn, C. G. (1997), Primary prevention of eating disorders: Might it do more harm than good?. Int. J. Eat. Disord., 22: 167–172. doi: 10.1002/(SICI)1098-108X(199709)22:2<167::AID-EAT8>3.0.CO;2D. http://onlinelibrary.wiley.com/doi/10.1002/(SICI)1098-108X(199709)22:2%3C167::AID-EAT8%3E3.0.CO;2-D/abstract

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This is a similar concept to creating a gratitute list. Not only as a positive means of charting where you are, but also taking pressure off when goal setting or expectations abound. Recovery can get full of goals and expectations. The nature of the eating disorder illness makes goals and expectations are hard thing to achieve during the early illness and into mid recovery and often set up failure. Goals also have a nasty habit of having deadlines attached to them – fail the deadline, fail yourself. Half the problem of goal setting, is they are usually set too high, or don’t meet the reality we live in.

SMART GoalsIf your ready for goal setting and want it to be part of your recovery process, then our team supported the SMART Goal strategy – define clearly on several parameters your goal (small or large). The success rate and forward movement using SMART Goals is higher than just randomly choosing goals or having people set goals for you.

The below is a gentler way of looking a things, whilst providing the criticial positive reinforcement needed and takes away the ‘deadline’ overhead and definite goal setting. If your not ready for goals this is a gentler way in. It can help those in later recovery explore themselves – their personality, their uniqueness. So much can get lost or forgotten during the illness that getting back in touch with who you are is a very much needed exercise. Carers can also use the concept to see the path travelled so far, whether its on a personal level or how your loved one is going. It’s something I would have liked to known myself or for my daughter.

Thank you to Weightless  – http://blogs.psychcentral.com/weightless/2015/01/this-new-year-focus-on-non-goals/

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Recently, on her blog Design for Mankind, Erin Loechner shared her non-goals for the new year — something she’s been doing for several years now.

That is, instead of creating resolutions or intentions, Erin shares a list of qualities or traits or habits she’s learning to accept about herself.

As she writes beautifully in her post:

“In a month where we’re encouraged to pick apart bits of ourselves – more of this, less of that – sometimes it’s just refreshing to take a step back and see the landscape for what it is. To swim in the grace we’ve been given; leap in the forgiveness we’re granted. To just keep walking, one foot then another, without searching for a new route that might offer a quicker arrival to a destination we were never intended to seek.

And so, I do this every year on Jan 1st: a brief list of non-goals. Non-resolutions, non-changes, non-improvements. It’s a short list of things I’m learning to embrace about myself; things that make me uniquely… well, me.”

She writes about embracing everything from her need to rest to her thin skin.

I love this idea. I think it makes for a meaningful, compassionate practice, especially since, as Erin writes in her post, this month is all about measuring and evaluating ourselves, seeing where we come up short, criticizing ourselves for all sorts of habits or qualities or choices.

At the same time I can appreciate how difficult creating such a list can be. It’s hard to sit down, and think about the qualities or habits I’d like to accept and even embrace in myself. It’s hard because I’ve spent years doing the opposite — making lists in my head of all the things I needed to change, living life from a place of “I’m not enough” or “I can’t do that.”

Our brains tend toward negative thinking as it is. And if your inner critic is particularly boisterous, it might feel hard for you, too, to think about self-acceptance.

But let’s try anyway. The hardest part is getting started.

So here goes. Here’s my list of my non-goals, a combination of the things I’m learning to be OK with and learning to be proud of:

  • You’re accomplishing something you never thought possible — writing a book. A book on one of your favorite topics (creativity!). A book that’s required months of self-reflection and sweat, going beyond the daily doubts that kept whispering and roaring (and, of course, still do): “who do you think you are to write this?!” or “what if this is utter crap, and they rip up your contract?”
  • You’ve become more honest and vulnerable with yourself and with others. You’ve let people see the “you” you really are, from super talkative and silly to the sacred, scared parts of your heart. This is something important and beautiful and powerful that your husband has taught you. (Just writing the word “husband” makes you smile. Over and over. And that’s powerful, too.)
  • You’ve surprised yourself. At so many pivotal moments in your life, you’ve worried that you’ll buckle, that you’ll shatter into a million little pieces. But you didn’t, and you haven’t. (And if you had, that’d be OK, too.) In some moments, in fact, you’ve remained calm and centered and present, taking in both the joy and heartache.
  • You do most things slowly. Very slowly. Writing an email. Cleaning the tub. Washing the dishes. Organizing. Asking a question. Telling a story. Writing a blog post. You like to absorb the words, to taste them and turn them. This isn’t a bad thing. In fact, it’s how your father was. And that makes it extra sweet.

Create your own list of non-goals. Have 10 non-goals or one non-goal. Start where you are. Add to it regularly. This doesn’t have to be a practice we start and stop in January.

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One of the best resource links on the website for eating disorders.

Gurze Ed Catalogue

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