Because Anon's latest questions might also be relevant to other people, I am doing a second post based on our own personal experience. Of course every family's experiences will be different and this is no substitute for proper medical or professional advice! But it might prove useful to someone, so here goes...
Anon asks: "When Ben eats almost anything, I'm guessing that means saturated fats and fatty foods too?"
My reply: Some sat fats and fats, but not all. There are still some hurdles that he needs to overcome and, ever since the ED hit, he has always had a huge fear of sat fats, despite the dietitian telling him that 'good fats' can, in some instances, cancel out 'bad fats' (I believe...)
Now, like many ED mums, I hate nutritional labels on food packaging with a passion because it's often the first thing an anorexia patient homes in on - and, with Ben, it was always the sat fats that shone out in Las Vegas Lights.
He would only buy certain brands of biscuits (cookies), for example, because they contained lower levels of sat fats. It cost me a fortune when I could have bought 'own brands' much, much cheaper.
But these days, it's not so bad although I do wonder that, if faced with a plate of unbranded biscuits / cookies, he would go ahead and eat one or refuse....
Anon asks: "And since he eats almost anything now, do you think he'd take supplements if suggested to him now? And did CAMHS ever say Ben required supplements to gain weight?"
My reply: No CAMHS never mentioned supplements and to be honest, these days, I don't believe there is any point. Over the last 14 months or so Ben has been eating what must be one of the healthiest, most nutritionally balanced diets on the planet. He is putting on weight and has been for some time, so supplements would probably be irrelevant. But, no, I don't believe he would take them if required. It took us MONTHS before he'd agree to take Prozac for his co-morbid clinical depression in the summer of 2010.
That's part of Ben's personality. He 'won't be told' as we say here in Northern England. He gets that off my Dad.
Anon asks: "Also, do you think Ben would still eat anything if you weren't counting his calories and just eating food?"
My reply: This is still a sticking point and it's something that CAMHS and I will be weaning him off over the next few months before he goes to university. At this moment in time he doesn't feel quite ready to do this. And, yes, I do think he might end up eating less and therefore losing weight. But it wouldn't be intentional, unlike in the past. Often he feels very full but continues to eat because he knows he has to have the calories. If he didn't have that gauge he might be tempted to think he'd had sufficient.
My own personal (and non medical or professional) opinion (which others might disagree with) is that, much as I know that counting calories religiously can be a millstone in itself, judging food intake by how full you feel could be dangerous in situations when it's so important that you put on weight and don't lose.
Anon says: "Is it also 4 meals a day? Most dieticians etc I've heard about recommend upto 6 meals a day?"
My reply: Yes I know that most dietitians, etc recommend 3 x meals, 3 x snacks a day during the re-feeding process and this is what we managed to get into Ben for the first 6-8 weeks of re-feeding during the early spring of 2010.
Then one day just before Easter 2010 he refused to cooperate any longer. Unfortunately at that stage we also lost our dietitian which meant the food control was passed to the other members of our CAMHS team. Much against my better judgment they allowed Ben to 'choose' his own meal combos and also a calorie intake he 'felt he could cope with'.
Immediately he reduced the number of meals and eliminated all snacks. He cut his calorie intake, too. After all, why would someone in the grip of 'high anorexia' 'choose' to stick to a high calorie eating regime?
But, because CAMHS were allowing him to do this, I felt powerless, angry and frightened.
CAMHS thinking was that Ben had to 'want' to recover before he could embrace a proper re-feeding weight-gain regime. Until that time there was little point in us 'forcing' him to do this. 'But what if he NEVER 'wants' to recover?' I asked the nurse in desperation one day. She just shrugged her shoulders as if to say 'Well if he doesn't, then he doesn't and there's nothing we can do about it'.
I wanted to scream...! What, were we just supposed to leave Ben to his own devices and watch him disappear in front of our eyes without doing anything to stop it? My whole gut instinct shouted NOOOOOOOOO!!!!!!
Predictably over the following months Ben lost a lot of weight until his weight was far lower than when he'd first been referred by our GP. Also during this time his mood and behaviours deteriorated. It was a pretty hellish time all round. And, meanwhile, I desperately tried to get CAMHS to support me in re-feeding him text-book style, but they insisted that Ben should 'choose' a way of eating he felt 'comfortable with'... Ben, not surprisingly, wholeheartedly agreed with them and I quickly became the Big Bad Mum who was trying to make him fat. It was Ben and CAMHS against me...
Week after week he was surprised to discover he'd lost weight when he was certain he'd been eating enough on 1800-ish calories a day. So he'd promise to decrease his exercise or make some other minor changes he felt certain would pile on the pounds. And the next week he'd do the same. Week in, week out... But he continued to lose weight.
'It's all a bit of an experiment to see what works and what doesn't,' CAMHS would say. But, to me, we were seeing a heck of a lot of what wasn't working and none of what was.
I know CAMHS were worried that if they came down on him too hard he might rebel. He might refuse to cooperate altogether. He might go underground. He might go Bulimic. And never forget that, at this stage, Ben was regularly threatening suicide. Better to ease him round to the right way of thinking gradually. So, although half of me screamed at what was happening during this period, the other half kind of saw they had a point. And, curiously, looking back, Ben said this method worked for him.
Then, in the October 2010, Ben was rushed back into the cardio unit with a seriously low pulse rate.
When they found out about this, CAMHS surprised and delighted me by coming down on him like a tonne of bricks. The psych, at least, did a complete U-turn in her approach and from that moment onwards CAMHS (largely, but not exclusively) supported me in the need to re-feed and gain weight.
However by this time Ben had established a way of managing his meals that worked for him. But for the first time for months CAMHS insisted he push up the calories to a level where he was putting on weight every week.
It was a slow process, but it started to work. Gradually, Ben built up his calorie intake based on what the scales were telling him. Because he now trusted the psych implicitly, he was reasonably happy to do what she suggested and believe that he wouldn't suddenly 'blob out'. However he never returned to the 3 x meals, 3 x snacks pattern. Frankly, by this stage I really didn't care how many meals or snacks he had as long as it got the calories into him!
Anon says: "Also, in relation to Ben's exercise, how much is he currently doing and was he doing throughout recovery? Like how many times a day, week, etc? and what type of exercise for how long at what intensity? And did you ever find out about any exercise he was sneaking in, and if so, how much was he sneaking in?"
My reply: As with many anorexia sufferers, compulsive exercising was a real problem. Around a year ago it began to get seriously out of control and I remember him sitting there with the CAMHS nurse listing all his daily exercises. Just when she thought he'd finished, he'd list a whole load more. And then a load more... On his own, he seemed unable to do anything about its iron grip. I knew that something had to be done.
It was also around this time that I discovered the Recovery Contract (see tab at top of page for more info). As part of the Contract we agreed a limited amount of exercise over and above which he wasn't permitted to go. At this stage Ben was totally honest with us. At an earlier stage he probably wouldn't have been.
Every evening we'd go through the Contract, checking that he'd stuck to his calories and exercise limits. Points were taken off if he broke the Contract, but I'm pleased to say he never did.
Today Ben's exercise regime is still much the same. The Contract has helped him get it under control and only do exercise that he enjoys. He manages the exercising, it doesn't manage him. He was always a sporty boy, so he could never give it up completely.
Regarding all of the above... Please note that this is based on our personal experiences and may not be applicable to everyone. Nor should any of my comments be ever considered as a substitute for the advice of a trained medical or other professional adviser.
All I can say is that, since Ben turned around in October 2010, it's worked for us.