"Pear-shaped and very, very messy" - a post from 16th May 2010 on the ATDT parents' forum.

A week after I posted on the Around The Dinner Table Forum about the ice-cream incident everything imploded. Ben was allowed to take back control over his eating with the caveat that if he lost weight, then I would take back control. Meanwhile there was a heck of a lot of triangulation going on with the dietitian appearing to say one thing and the rest of the CAMHS team saying another. On top of this I had my husband siding with CAMHS, so I really did feel like the Arch Baddy in the proceedings.


I was just so very confused. My gut instinct (and advice from the ATDT forum) was screaming out that Ben needed to have everyone 'on the same page', working against the eating disorder to get the weight back on and for us - as a united team - to be taking control, pushing together and never taking 'no' for an answer and definitely no negotiating.

But it wasn't happening. Had it happened I still feel to this day that we could have been one fantastic and successful team, especially as Ben got on well with the psychiatrist. But instead, I believe I was seen as part of the problem, not part of the solution - and it was punishingly difficult to pin down the psychiatrist to discuss our views and indeed discover what kind of treatment model she was implementing.

Last week, if you remember after 6 very successful days sticking to the higher cal / fats eating plan, Ben refused to eat the meals and snacks I put in front of him. The only way I could get him to eat was to allow him to take back some control over his intake and strike a deal that if he LOSES weight by his weigh-in next week, then I take back total control. The psychiatrist has been 100% behind Ben's desire to take back some of the control whereas I've been 100% sure he isn't ready to do so.

Triangulation, with me as the 'baddy'.

Anyway, we saw psychiatrist on Fri followed by the dietitian (separate meeting i.e. psychiatrist and dietitian aren't together). Psychiatrist is still behind Ben's desire to take control despite the fact he had LOST 0.7 of a kg on Friday (which must have happened during the 'pear shaped' days when he was refusing to do the eating plan). Meanwhile dietitian is completely on my side, unhappy about Ben taking this control and reinforcing why this diet plan was prescribed and needs to be followed. Reluctantly however after Ben's protests, she agreed that he could continue with the 'deal' with the caveat that if he hasn't put back the lost weight by Friday's weigh-in, then I take back control and the strict eating plan kicks in with a vengeance.

It all started well, with Ben mirroring the eating plan on Friday. But then on Sat he went on his camping trip with his friends - great from a social point of view, but terrible from a food point of view. When he got back, he was just like any other boy who'd had a fun weekend with his mates which was good... initially... but then things quickly spiralled out of control as he started to tot up his calorie intake, checking calories on the web, etc - and he went into total panic, convinced he'd been 'bingeing', disgusted at himself and generally beating himself up about this so-called 'binge' and refusing to eat any more food today, also refusing to let me take back control and reinstate the eating plan which all my instincts scream that I should be doing. I can't clamp his mouth open and force-feed him - and the eating disorder just spits back at me that I can't go against what the psychiatrist has instructed. So what can I do?

Things have gone totally pear shaped and very, very messy. It's not come as a surprise and I'm mad at the way the treatment team have been handling this with, on one hand, the psychiatrist telling Ben that yes it's great he's taking more control and, on the other, the dietitian insisting he isn't ready (which I agree with). Plus, because of this, Ben is getting some pretty dreadful mixed messages. So much for 'all singing from the same hymn sheet'...

We have a weigh-in with the nurse this week, but we don't have a psychiatrist or dietitian appointment for another fortnight. And if Ben hasn't put on the lost weight, then who's to say he WILL stick to his side of the 'deal' and allow me to reinstate the eating plan. Help!!!

And...

Until the weigh-in on Friday when Ben knows that if he hasn't put on the lost weight I take back 100% control... I am trying to control it in the guise of him doing it but I'm there in the background 'strongly recommending' he has x, y and z... sounds odd, but I think for just 3 days it will have to do.

Already Ben is trying to negotiate for more time, but I said a Big Firm NO and blamed it on the dietitian ("I can't go against medical advice... it's as if you had cancer, were prescribed chemo and hated it, asking me to stop it... I'd have to say no, because it's been prescribed for you and I'd be negligent, etc etc to do that" blah blah stuff along similar lines...)

I said at some point in the hopefully near future, he'd be given another chance to take control back... when he's ready... and so on...

I had to go and pick him up at lunchtime at school today after an end of 5th form English lesson celebration which went pear-shaped when cakes were brought out... Ben couldn't handle it and freaked out... but things had been heading downwards since he got up this morning. I tried to prevent him going to school, but he insisted. And he is adamant he will try school again tomorrow. Thankfully just 2 days of school to go before exam leave.

Meanwhile he's trying to mirror the diet plan again, which I guess is better than refusing to eat... roll on Thursday's weigh-in... For the first time I'm actually hoping he's LOST weight giving me the ammo to take back 100% control.

Meanwhile he's getting super-stressed about the end of 5th form day tomorrow with Big Lunch with 5th form and Headmaster followed by talent competition. You could say I should keep him away but he's insisting he goes. He won the talent competition last year, but I'm really worried that this year he will flip and something horrible will happen as his eating disorder-led desire for perfection kicks in. But he insists on going...

I shall be SO GLAD when tomorrow is over, followed by the weigh-in on Thursday when things can return to "normal" with any luck and I can concentrate on kicking the eating disorder out of our lives.

As Ben is sitting his GCSEs separately from his peers, hopefully that shouldn't create too much extra stress (other than the usual, normal GCSE stress...)

I'm reluctant to change psychiatrists - how do I know it won't be a case of 'out of the frying pan...'? Plus Ben has built up a good rapport with her which he'd need to build up again. Plus, it sends out the message to Ben that we don't believe the psychiatrist is doing it right after all (so who's to say that any psychiatrist is right)...

For all I know she may be doing a wonderful job, in a low key 'softly softly' sort of way... after all, Ben has definitely improved over the past 3 months... and, as the school nurse says, at least he is talking to her (as opposed to sitting there with his mouth clamped shut). It's really hard to know what to do... I think I'll give it a little longer and see how things go. If alarm bells start ringing very loud, then I'll have a re-think.

The staff at school have been brilliant. Meanwhile Ben is wound up like a coil at the moment, biting my head off at the slightest food/eating plan-related question, even when put as subtly as possible!

Never mind, in 30 mins time I have MY first appointment with a therapist to try to kick my anxiety / stress into shape...

And...

Ben got weighed today, as planned, and had put on 0.1kg (remember he lost 0.7kg last week and a little the week before). Before I could say anything the nursing assistant rushed in with: "Well I think he can continue monitoring his own food intake for another week". So that's what I had to do, couldn't argue the case in front of Ben - we must appear to be singing from same hymn sheet and all that...

It worries me alot that if he put on 0.1kg this week and continues to eat how he is eating it will take him SEVEN WEEKS to get back to where he was before the 0.7kg weight loss!!!!!!!

And...

I've had a very stressful week. Ben continues with his version of the eating plan and screams at me if I make so much as a whimper about what he's eating. Meanwhile I am sure he isn't eating enough (to put it mildly...) (He is trying quite hard, but he really isn't eating enough, but I guess Friday's weigh-in will be the telling time.)

I've had massive arguments with my husband who keeps accusing me of "Going against all the professional advice" (which is to let Ben get on with things his own way) over and over again while Ben accuses me of behaving like I am because I can't handle losing control of the eating.

Meanwhile I can't get hold of the CAMHS team or the dietitian, having emailed, phoned, arranged for the nurse to leave messages in pigeon holes, etc. No-one is getting back to me (so I can arrange a meeting without Ben present and also move our dietitian appointment forward from next week to this).

And I know on Fri when we see the psychiatrist she will whisk Ben off to be weighed followed by a session between her and him while my husband and I see the nurse (who never seems to pass our concerns on to the psychiatrist, or at least it never seems that way). By the time we see them at the end of the session, she'll have said something like: "He's lost a little weight, but I feel he's doing SO WELL we'll let him carry on as he is... I've told him to try a little harder to eat more..." sort of stuff.

I feel as if it's just me, surrounded by Ben, my husband and a CAMHS team that all want to do it very differently than my gut instincts shout out and I am very, very depressed about it all. (So much so I had to rush out of church on Sunday in tears because, for some reason, it just got to me... it was SO EMBARRASSING with everyone staring at me... followed by a day of feeling terrible, with my husband continuing to criticise my handling of this. I'm almost wondering if they're right and I'm just potty or a control freak. I feel totally helpless!)

PS I never did get that anxiety / stress therapy. Last week turned out to be an assessment with another 6-8 weeks until I get a (max of 6) appointments. I went to the GP about it on 30th March, so it's a heck of a wait.

And...

Tomorrow is the weekly weigh-in and Ben's psychiatrist session. My husband and I plan to grab the psychiatrist before she disappears in a puff of smoke to set up a private meeting between us and her, without Ben, to see what her gameplan is - and to suggest that extra CBT help for the severe anxiety might be useful (even if we have to bring that in privately).

If we aren't happy with the results, then we'll take it from there. Difficult to switch treatment teams because you never know if they're going to be better - or worse! Difficult to get GP on our side as she's on long-term leave and we have several GPs, but I'm going to ask the receptionist if any specialise in eating disorders and if they do, to see them and talk.

All credit to him, Ben has been trying very hard to eat within the eating plan and things are leaps and bounds ahead of what he used to be like - massively different. But tomorrow's weigh-in will tell if it's working or not. If he's lost or just maintained, then I need to take control. If the psychiatrist zaps in first with a "carry on as you are and just try to eat a little more" type of thing, then Ben has agreed with me that I can monitor his intake from a calorific point of view to check he's getting sufficient calories. So hopefully whatever happens tomorrow I will feel more confident that at least some element of control has been regained.

But, importantly, my husband and I need to talk to the psychiatrist separately at some point very soon to see what her plans are - from eating through to the confidence, anxiety, etc issues.

When I look back over the past few months I can see massive changes for the better, despite the setbacks that send my stress levels stratospheric, so that has to be a Good Thing. And they've all taken place since we started therapy, not before. So the psychiatrist and her team must be doing some good.

But the biggest issue really is addressing the severe social anxiety problems. Ben is fine when he's not in school, but the moment he goes back then - zap, pow! - he's off the rails again. So we're strongly going to suggest introducing a third party therapist, suggesting s/he 'complements' what the psych is doing.

Thanks everyone, once again, and watch this space...

And...

At Friday's weigh-in, Ben had PUT ON 0.6 of a kg so he's now put back all the weight he lost - and this has been under his own steam. So we are trying for another week to see what happens, but this Thursday we'll be seeing the dietitian and the key issues for me are his fear of certain fatty foods (including semi skimmed milk) (and cheese - at the weekend he deliberately asked for a meal WITHOUT CHEESE in the pub) and fear of generally overdoing it and ballooning out.

The (diplomatic) suggestion of external CBT therapy didn't go down well with the psychiatrist!!! But Ben is starting a weekly anxiety group run by CAMHS at their in-patient facility next week. We are also arranging a meeting between the psychiatrist, my husband and me for next week to take stock of everything.

So that's where we are at the moment...

And...

I should have known better. Took Ben for a hair cut because his hair had grown out of control over the past few months; thought - in my naive, misguided way - it would be good for him. But his body dismorphia kicked in with a vengeance and he went MENTAL afterwards, effing and blinding, shouting, weeping, walking the streets and generally going OTT because it looked "cr*p". I feel like kicking myself. With GCSEs next week, I should have known better than to interfere. Boy, am I beating myself up about this - and son is out of control...