On top of this he wasn't sleeping. In fact insomnia became a major problem as the constant maths were going round and round inside his head: input, output, input, output. How much exercise would he have to squeeze in to work off whatever he'd eaten that day... And meanwhile, despite promises to hand back control of his food intake to me (constant promises throughout the whole of the summer), CAMHS simply weren't doing this.
In mid September I'd had a private meeting with the psychiatrist. I'd made a long list of points I wanted to talk about and almost marched her through them. Because time was limited, I steered her back on track whenever she went off on a tangent. The meeting was a success; I conveyed my worries and concerns. So I really hoped that we'd be working much closer as a team, working against the eating disorder to get Ben well.
This is a post that I put up on the Around The Dinner Table Forum on the 20th September.
We took our 16-year old son out of school in February after months of problems (thanks to the eating disorder he just couldn't face school; he couldn't even face walking across the car park or being seen). He'd also cut himself off socially from his friends. However over the past few months he's re-established contact with many of his friends - not fantastically so, but at least he's made an effort, went to the cinema or town with them, etc in the summer, etc.
The week before last he went back to school into the 6th form, but has admitted he is completely isolating himself socially, avoiding the common room, has "nothing to say" to his friends and spends free periods, break and lunchtime studying in the library. He also goes into lunch on his own. Obviously this is worrying me a lot - help!!!
He's not sleeping, either. Slept well at the weekend of course.
Also, refeeding is a real battle as he simply won't buy into the idea of eating the calories he needs to put on weight. He always eats all his meals (which is great news) - but he's cutting down on school dinners and is resisting the 'extras' he needs to bump up the calorie total.
PS Things are improving with CAMHS - I had a long and fruitful meeting with the psychiatrist last week but obviously time will tell...
He is loving the school work, thankfully. But, yes, we need to sort out supervised lunches, maybe with a vigilant staff member?? It's difficult when son is so old i.e. he can't be supervised by 6th formers because he is one. He refuses point blank to lunch with me in the car park! CAMHS say they will take action if he loses this week as the 'culprit' will obviously be school dinners.
He is finding it doubly hard because of the compulsive need to exercise and since he started school he's (quote) "sitting around doing nothing all day" therefore doesn't feel the need to take in sufficient calories. That, plus the lack of sleep (he's off school again today, absolutely exhausted).
Re exercising... He used to do games on a Wednesday afternoon but now that's been changed to community service which has depressed him quite a bit. After the summer he's finding the transition to being at school and not being able to exercise at will very hard to take and it dominates much of his thoughts.
He is still not sleeping and is pushing himself to go into school. His mood is rock bottom and he's noticeably cutting back on food in denial about needing to eat, put on weight and recover. Hopefully this is something we can get CAMHS support on at our meeting tomorrow, but it's a really difficult situation because he refuses NOT to go to school (and needs the mental stimulation), but is isolating himself, depressed and not eating. I am fed up of fights over getting him to eat stuff and worried about his low mood and lack of sleep. He looks TERRIBLE.
Ben saw the psych today while my husband and I saw the psychiatric nurse who works with her. The psychiatrist is much more serious about intervening than the nurse who is of the opinion that Ben has to embrace the need for change before any change can take place and there's little we can do if he refuses to cooperate (except watch him head downhill towards IP status, presumably) - and hope that somewhere along the line he will suddenly "get it" and turn a corner.
That wound me up and I said surely they had a duty of care to intervene now, before things get to that level. School dinners are the obvious problem, so - with a bit of pushing and straight talking from me - I suggested that we should consider either pack lunches in a supervised / private environment OR seeing if the school can plate up a meal like they might do for people with special dietary requirements. I guess this will be up to me to sort out. I am disappointed CAMHS aren't taking direct action; last week they promised they would if he lost more weight.
At the end of our separate sessions we all got together and I felt the psychiatrist was far more prepared to intervene and try to turn things around than the nurse. But, because Ben had only lost 0.3kg this week, I didn't feel they were seriously stepping in to take action, more a case of leaving it another week "to see how it goes". And next week the psychiatrist is away, so Ben and I are both seeing the nurse.
Meanwhile Ben is off school again due to exhaustion / lack of sleep and his mood is LOW.
Conclusion? I am pleased and surprised he hasn't lost as much weight as I thought he would have lost - which means we must be doing something right. If we can sort out the school dinner problem, we may be able to see a turnaround on the weight front. But I am disappointed that CAMHS aren't intervening directly on that count and I can't understand the nurse's attitude that there's little we can do unless Ben actually wants to cooperate.
If we're not careful, he will continue to lose weight gradually - and because it's gradual and not sudden, CAMHS won't see it as serious. But he's been losing weight in this way since the beginning of the summer and IT ALL ADDS UP!!!
To be honest, I feel CAHMS have let me down after all the promises last week following my private meeting with the psychiatrist.
Having said all this, I still feel confident that the psychiatrist WILL intervene...
We were having alternate individual and family sessions with the psychiatrist but she is keen to do some intensive CBT work with my son - hence the separate nurse appointments for us.
School is being great about Ben being there when he can, but not when he can't and sending work home for him so he doesn't get left behind. It also keeps him mentally stimulated which he needs.
Ben and I are having a chat today about the best way forward with school dinners. He would miss too much if he just went in mornings only. It's not me pushing him because I'm not; it's him being mega keen to go in rather than being at home.