16 months of treatment and how effective has it been?As you know Ben has come on leaps and bounds on the behaviours / mood front over the past 8 months. He is also managing lots of 'fear foods' which used to freak him out. But I can't help thinking that the treatment has been a bit odd... In fact it's difficult to pinpoint exactly what form the treatment model is. Yes, our 2-person treatment team is brilliant at listening and asking questions. They're also great 'fire-fighters' in a crisis and very nice people, too. The psychiatrist's assistant in particular is very good at taking notes. At first I thought the purpose of this copious note taking was so they could go away, have a meeting and formulate a strategic plan of action. But 16 months on she's still taking notes. We've had loads of promises about the need to focus on this, that and the other, but - unless these things are like some kind of hidden machine working away in the background - I still haven't a clue what the Big Plan is...
At first, back in February 2010, the team didn't take us very seriously. Or at least that's the impression I got. Yes Ben was underweight for his age and height, but not disastrously so. (Let's forget the fact they hadn't known him when he was a strapping athlete and rugby player...)
I was kind of treated like a paranoid mother and made to feel as if I was making a load of fuss over something that really wasn't too bad at all.
Because his weight wasn't dangerously low, there was minimum focus on the need for weight gain and maximum focus on the cognitive side of things i.e. talking about the past, talking about our issues as parents, talking about Ben's problems with socialising, being in school, anxiety, etc. But just talking about it, really... (and taking notes).
Oh and emphasising that Ben had to "want to recover" before he would.
But importantly I wasn't really supported in my powerful gut instinct that the primary focus should be on getting the weight back onto Ben - and that we shouldn't stop until he was well and truly Weight Restored.
It was always a case of suggesting it might be "easier for Ben to handle" if we arrived at a weight "he could cope with", even if that was well below his previous weight. Ben was (and is) asked what kind of weight he'd "be happy to settle at".
The assistant even once said that "some people just choose to settle at a lower level and stay there, so they do. After all, it's their choice, no-one can force them. By this stage they are adults making their own choices."
But in those first few months of treatment I had no idea that this kind of approach probably wouldn't get us anywhere. Indeed the weight issue has proved a positive 'spanner in the works', especially recently. Ref the assistant leading Ben to believe he'd "arrived" at an acceptable weight the other week and ref this week when Ben was told that "medically you DO need to weigh more than you do now. Probably not as much as your mum would like you to weigh but somewhere inbetween".
This has been bugging me ever since and has led me to ask exactly how we are benefiting from the professional treatment.
If all it does at the moment is make Ben depressed and undermine my efforts to gently push Ben towards a proper weight level, is the treatment of any use?
I am tugged in so many directions.
On the one hand I have the treatment team saying this, that and the other.
On the other hand I have all the latest evidence-based research and my fellow eating disorder mums plus leading eating disorder experts saying that the focus must be on weight gain first and foremost with the cognitive side taking second place.
My own experience has shown that Ben flourished once I put my foot down, challenged the treatment team and started to follow my gut instincts on the eating / weight gain front.
The ATDT forum and FEAST website have been especially helpful and supportive here. What they don't know about 21st century eating disorder treatment isn't worth knowing! And this approach has worked for so many of their children.
I first put my foot down back in September and we gradually experienced a turning point in the recovery process which started around October and continued.
I put my foot down again earlier this year when I realised that we'd reached a plateau / Limboland. So I formulated our Recovery Contract which saw Ben gain weight at an acceptable weekly level over a number of weeks.
It can't be a coincidence that his current resistance to weight gain started at exactly the same time as the team challenged my concept of weight restoration and then made that other unhelpful comment last week.
Eating disorders love triangulation between parents and professionals - and, obviously, the eating disorder is going to take the side that implies they can "finally settle" at a weight they are "happy with". In other words, don't listen to mum who's insisting you need to weigh even more.
Translated into eating-disorder-think read: "Don't listen to mum who is trying to make you fat."