Thursday, 14 November 2013

Why it was so hard to fight for Ben in 2010...

There are several reasons - these are just a few of them...


1. I still didn't know much about eating disorders; as the parent of a boy developing anorexia, I was going through a huge learning curve and only discovered the awesomely supporting and informative FEAST community and its ATDT forum in March 2010, some 6 months after I first took Ben to see the GP. Far from being 'just another internet forum', the FEAST community and its messages are respected by leading eating disorder specialists, researchers and practitioners across the world. In other words, they know their stuff! Yet, when I first discovered FEAST, I felt sure that, somehow, CAMHS must be right and FEAST must be wrong, as their messages / approaches appeared to conflict. And not just conflict a bit, but be at polar opposites i.e. FBT / Maudsley focusing on full nutrition first and foremost (FEAST) and the Talking Treatment (CAMHS) with less emphasis on full nutrition / weight restoration.

2. I was a wee bit scared by finding myself in front of The Experts, and especially a psychiatrist with a string of impressive qualifications. After all, I was just a mum, a newcomer to this horrible illness, anorexia. As far as I was concerned, what did I know? How could I contradict the professionals? Especially by quoting 'something I'd found on the internet'...

3. After some initial teething problems, I actually began to like the psychiatrist. As a person. I mean, she was really, really nice. And, as time went on and she began to get to know Ben well, he and she got on like a house on fire. He took on board what she said as 'gospel'. And, unlike so many disinterested medical professionals, I felt that she really did care about Ben and went out of her way to extend our sessions if needs be and to arrange emergency sessions as and when we needed them (after it became clear that Ben had been deceiving them and all was NOT well inside his head...) Looking back, I really should have taken advantage of the fact that she was nice, liked Ben and - eventually - began to respect me to a certain extent, and fight for full weight restoration for Ben, and full and complete recovery before he was discharged. Especially as Ben trusted her and took her word as 'gospel'; it could have been massive leverage in his fight for full recovery. But by the time this happened, it was too late. Ben had reached the age of 18 and the psych was leaving CAMHS. It was literally the 11th hour... too late...

4. I was just so bloody exhausted! It's easy to look back in retrospect and wish you'd done this, that and the other, but the fact is that dealing with the worst of an eating disorder is mentally, physically and emotionally draining in every way. In such circumstances you, as a parent, can only do 'so much'. This is why you need a rock-solid treatment team behind you who can deal with the stuff that you simply can't - like getting him to eat, and getting the weight back on.

5. I was fighting Ben (or the 'Anorexia Demon') at home. He was taller and stronger than me, and would get physically violent. People would tell me to take him to A&E (ER) when things went totally pear-shaped. But tell me how little me was supposed to bundle tall, strong, violent Ben into the car and get him to A&E? Or even if I did get him into the car, how to keep him in it? Yes, in theory, I could have called an ambulance or my friend Sue's husband, or my sister's partner to help restrain him. But the 'Anorexia Demon' is a whiz at emotional blackmail. "Get help and I will run away / kill myself / whatever" it would spit at me - and I knew that it meant it.

6. I couldn't get Ben to eat. He refused to eat most of the foods on the eating plan which I'd managed to get off CAMHS and he had a habit of turning mealtimes into Armageddon. Getting him to eat without expert help was impossible. It's as simple as that.

7. I was just relieved that he was turning up for CAMHS sessions. He could so easily have refused to go along and then what? So, often, it became a case of appeasing the 'Anorexia Demon' by going along with it and keeping it happy rather than risk Ben dis-engaging with treatment, running away - or worse.

8. Initially, CAMHS didn't take it so seriously (as described in the posts below). Also, Ben was led to believe that his BMI was OK... it was within the 'healthy range' on the official charts. In a letter to me the psych said: "First and foremost, it is important to note that Ben has not at any time strictly met criteria for a diagnosis of anorexia nervosa, as  his weight has never dipped to a point sufficiently low..." This, when the 'Anorexia Demon' was raging! He was never blind-weighed or checked if he was cheating when it came to weigh-ins, and he was always weighed fully dressed (without shoes). As a result, many CAMHS sessions tended to be spent firefighting Ben's extreme reaction to putting on a tiny bit of weight. Unsurprisingly, CAMHS sessions went relatively well when he'd lost...

9. For the first few months we saw a dietician every couple of weeks or so - and she supported me in what I believed we needed to do. And then she was withdrawn because of funding. I cried when I heard. I fought to have her reinstated, complained to the NHS, had a long and fruitless conversation on the phone with Someone Important at CAMHS, and with the psychiatrist, but no-one felt that Ben needed dietetic help at this stage. In a letter to me the psych said: "We have reflected on how much you valued the dietician's input and would have wished for that to continue. I would re-iterate that the purpose of her sessions was to evaluate Ben's diet at the point of referral and make recommendations as to how he could move to a more appropriate, varied diet without prescription or excessively strict detail. I believe that you, and Ben, are fully aware of what constitutes a healthy diet, and the dietican's useful sessions served to reinforce your already sensible grasp of what we would aim for." Actually, I would hazard a guess that many parents and their anorectic children are fully aware of what constitutes a healthy diet, similar to how an alcoholic or drug addict knows that their habit is harmful... but this doesn't mean we can get our child to eat!


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