Meanwhile, I'd also discovered the Around The Dinner Table forum (for parents of young people with eating disorders). The forum was generally advocating FBT (Family Based Treatment) otherwise known as The Maudsley Approach - a model that didn't bear any resemblance to the treatment my son was getting at CAMHS. Indeed it seemed like a complete reversal: food first, brain second rather than brain first, food second.
I posted on the forum, asking whether I should be focusing on CALORIES or PORTION SIZES. Our dietitian was insisting on portion sizes. But, with a boy who wouldn't eat any fats and minimum carbs, portion sizes were always going to be a loser from the start. A portion of salad or veg simply didn't have the weight-gaining clout of a portion of steamed pud and custard, macaroni cheese or whatever.
The advice (from the mums on the forum) was to plate up meals myself and to ensure they had loads of calories in them. 'Magic Plate' (used in The Maudsley Approach / FBT) is where you simply put the food in front of your child and sit there until they have finished.
Sadly that wouldn't have worked for us as I explained in replies to their messages:
The trouble is... I can't force feed him these things and he refuses to eat them. He won't open his mouth. And then he goes off into one of his out of control screaming / head banging sessions. Keeping him seated at the table doesn't work because he just escapes or smashes his fist down onto the food, mushing it up so it's inedible (and then escapes).So how did I get my son to put on weight? I didn't. Well I did initially as I persevered with the eating plan, sans support. But within a month or so it was decided that 'Mum's Eating Plan' was too stressful for my son. It was dumped. My son took over preparation of all meals except the evening meal. The idea was to trust him to be eating what he claimed to be eating. If the CAMHS scales showed weight gain, then he was obviously making the right choices. If they showed a loss, then he was making the wrong choices. This way he would learn how to make the right choices... And, anyway, CAMHS weren't too worried about his weight; a month or so on the eating plan had tipped his BMI back into the 'healthy' range.
In our small house, keeping him away from the fridge is impossible and in the fridge are products covered with nutritional labelling. If I remove the labelling or try to cover it up, he knows I'm hiding fats I don't want him to see.
Occasionally I can sneak things like butter into the mashed potato, but his taste buds have become SO fine-tuned into noticing when it tastes different, he immediately knows when I've added stuff.
Our latest battle is to try to get him to eat Low Fat Yogurts (115 cals per pot) as opposed to Zero Fat Yogurts (75 cals per pot). I anticipate BIG FIGHTS about that...
I have NO IDEA how I can get him to eat higher fat things without literally force-feeding him which is impossible when he's nearly 6ft tall and pretty strong, and I'm only small. Help!!!!
I can tell him that there is evidence to suggest fats help with depression, etc until I'm blue in the face but I might as well be speaking Chinese... ESPECIALLY as his weight has just slipped through into the "safe" BMI range WITHOUT the need for these "extra fats" (as he says...) so giving him fats now at this stage, he insists, will make him balloon out into a monster... He feels they are totally unnecessary.
The toys were thrown out of the pram again at lunchtime when faced with a beef sandwich, "dripping" with fat followed by a seemingly endless and pointless argument with my response consistently along the lines of "I am not arguing, this is the way it is and that's final" etc etc etc etc... then threats of what he will do when he's next weighed and has ballooned out into a ten tonne monster, all my fault and all thanks to my extreme diet plan which, apparently, would horrify the dietitian and he's going to make sure she knows I'm mistreating him / fattening him up so much.... "Fine, OK, do that, see if I care" say I, etc etc etc...
The bad news is that on Day 2 of the Standard Yogs I caught him trying to bin half a pot (I intercepted it and made him eat it) so on Day 3 when it was H's turn to monitor breakfast I told him to be vigilant... which he wasn't... until he looked in the bin and found a piece of kitchen paper containing most of the yog which should have been eaten with the cereal... So we are being super vigilant now, like prison warders (which is what I am normally but H hasn't been so strict; now he knows why he needs to be...)
But it was too much independence and trust, too soon. Not surprisingly my son wasn't eating nearly as much as he needed to be eating in order to put on weight. He lied about how many calories he was consuming for breakfast and lunch. He disposed of food. He policed the kitchen as I prepared evening meals, analysing them scrupulously for anything that had been sneaked in and weighed every meal to ensure he wasn't getting a Nano Gram more than me.
From this time onwards, his weight gradually dropped - and I stood there watching, feeling heart-broken and powerless.
So why did I fail to get my son to eat and put on weight in those 9 or so months between the withdrawal of 'Mum's Eating Plan' and the point when he reached his lowest weight?
Purely and simply because I didn't get any support with eating. My son was too wilful and strong for me. His dad was working away much of the time and so it was little me against tall him - and you'd be surprised at just how physically strong Ben could be! On top of this there were threats to run away and suicide threats. I was powerless.
CAMHS preferred the 'talking treatment' - the 'right / wrong choices' based on what the weekly weigh-in was saying. As a result if he gained a little weight he promptly lost it again after a frantic 'fire-fighting' CAMHS session. If he lost weight, the CAMHS session went more smoothly.
To be successful, I would have needed someone to come into our home at mealtimes, someone properly trained in getting the patient to eat. I would have needed full support in the CAMHS sessions and for us to present a united front against the eating disorder. Instead I was made to feel that my actions were 'unhelpful' at best and interfering, even harmful at worst. My son was absorbing these messages like blotting paper: mum's food obsession = bad, CAMHS softly-softly approach = good. And, anyway, most of the sessions were individual with the occasional family session - or with me being invited in for the final ten minutes.
To be successful in getting my son properly weight restored, I would have needed my son to be weighed 'blind' so the CAMHS sessions (and the 'mum punishment' afterwards) weren't so reactive, for me to be in charge of all meals magic-plate-style with hands-on CAMHS support and for CAMHS to insist on gradual weight gain until he reached his pre-eating disorder weight. A weight gain of 0.5kg a week is what is suggested in the NICE guidelines. Yes, on occasions my son did gain 0.5kg a week and sometimes slightly more. But then, after a fire-fighting CAMHS session, he'd lose it again - and more.
Trying to get my son weight restored on my own was never going to work, especially when he was being informed that his weight had just tipped into the 'healthy' range. And also (on one occasion) that apparently some people choose to stay at a low weight because they find it easier to handle. Plus (on one occasion) that Ben might find it easier to choose a weight he felt he could cope with.
With this kind of message why on earth would my son ever be motivated to eat a normal balanced diet and gain weight?
It makes me exhausted just to think about this lengthy period and the sheer helplessness I felt as I watched my son's anorexia get worse together with CAMHS sessions where the clear message to me was to 'back off' on the food wielding front.
This is what the Maudsley Parents website says about the more traditional, non-FBT models for eating disorder treatment:
More ‘traditional’ treatment of AN [anorexia] suggests that the clinician’s efforts should be individually based. Strict adherents to the perspective of only individual treatment will insist that the participation of parents, whatever the format, is at best unnecessary, but worse still interference in the recovery process. In fact, many proponents of this approach would consider ‘family problems’ as part of the etiology of the AN [anorexia]. No doubt, this view might contribute to parents feeling themselves to blame for their child’s illness. The Maudsley Approach opposes the notion that families are pathological or should be blamed for the development of AN [anorexia] . On the contrary, the Maudsley Approach considers the parents as a resource and essential in successful treatment for AN [anorexia] .
In our situation I don't know what I could have done. I did everything I could. I made my concerns clear at CAMHS. I posted on the ATDT forum (goodness only knows what I would have done without this support!!). I tried my damnedest hardest to get my son to eat. I couldn't have done any more than this and it makes me so very, very sad knowing what I know now about evidence-based treatment not to mention the fact that my city is now adopting FBT (Family Based Treatment) as the preferred treatment model for adolescents with eating disorders.
If only they'd done this back then.
If you're struggling to get your son or daughter to eat, take a look at Eva Musby's videos for parents, each very watchable and incredibly useful. Find them here. She's also written a great book - Anorexia and other eating disorders: how to help your child eat well and be well - endorsed by many parents and professionals. Visit Eva Musby's website here.