Don't get me wrong... I welcome all kinds of comments on my blog. Often, like the comment I received the other day, it inspires me to write about why I do the things I do and worry about the things I worry about. So when Anon posted "Why are you obsessed with his weight ? It's only 2kg" [about Ben's 2kg weight loss over Christmas] I couldn't resist responding here...
When, as a parent, you've been fighting your child's anorexia for three-and-a-half years, any weight loss sets the alarm bells ringing. After all, it was steady weight loss... which crept in almost unnoticed... that triggered the eating disorder in the first place. Gradually, over a period of ten months or so, Ben somehow managed to lose one quarter of his bodyweight at a rate of just under 2kg per month. So when he loses 2kg in one week, I naturally get anxious.
When he began treatment I insisted on implementing an eating plan which resulted in 3kg of this lost weight being re-gained before Ben "downed tools" and refused to cooperate any longer. I wasn't supported by our treatment team. Control of his food intake was handed back to Ben because it was felt that this would be "more helpful" to him than "mum's eating plan".
Over the following ten months he gradually and consistently lost weight again until - in February 2011, 13 months after he began treatment - he reached his lowest-ever weight. But again the weight loss was so gradual that the alarm bells didn't appear to be ringing in the clinicians' ears. Half a kilo here, point one of a kilo there... So, again, a loss of 2kg in one week makes me want to take swift action.
Twice Ben was hospitalised with a dangerously low pulse rate (29bpm). Heart failure is one of the most common causes of death in eating disorders. The heart is a muscle after all and former rugby prop forward Ben had lost a massive amount of muscle as well as fat.
As Eatingdisordersonline.com says: Rapid weight loss as can occur with Anorexia Nervosa can cause dramatic, unhealthy, and dangerous changes in the heart and sharply increase cardiovascular risk. Anorexia has been associated with mitral valve prolapse, supraventricular and ventricular dysrhythmias, long QT syndrome, bradycardia, orthostatic hypotension, shock, chronic heart failure (CHF), and even sudden cardiovascular death.
These fancy scientific words describe a variety of conditions, but in general, the heart of an Anorexic or person who engages in restrictive eating patterns and experiences significant weight loss, will take a physiologic beating. The heart muscle may be weakened in a variety of ways leading to low blood pressure, an irregular heartbeat, a slow heartbeat, and even sudden death.
When you've sat beside your child's hospital bed... not once but twice... worried sick that their heart might give up any moment, weight loss takes on a whole new and deadly meaning. I still have regular flash-backs to the days when I was convinced that something - either self-inflicted (e.g. suicide) or a side-effect of the anorexia (e.g. sudden cardiovascular death) - would rob me of my precious son.
All of the above have been primary drivers in my fight to help my son recover from this devastating illness and ensure that, if he does lose weight - whether as a result of illness, anxiety or food restriction - it is quickly reversed.
Ben has said: "The anorexia stole three years from my life; I'm not letting it steal any more" which is why he, too, is keen to kick the anorexia out of his life and reverse any unexpected weight loss. He knows that I am a vital part of "our team" (as we refer to him and me versus the ED) and knows exactly why I do what I do.
Thank God I never sat back and thought "Well, it's only 2kg..." or whatever...
Someone who doesn't understand what we parents-of-anorexics go through might accuse me of over-reacting. But, to be frank, I'll do all the over-reacting I need to ensure my son not only stays alive, but eventually gets his proper, full, fun-filled and rewarding life back.