Monday, 16 May 2011

On this day 12 months ago...

Inspired by a thread on the positively saintly ATDT forum, I took a quick look back at where we were exactly one year ago today. Here's my (edited) thread for Monday 16th May 2010 plus my responses to the various bits of excellent advice (read the original thread here>>):

Pear-shaped and very, very messy

On Saturday our son went on a 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 Ed just spits back at me that I can't go against what the psych has instructed. So what can I do?

Things have gone totally pearshaped 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 pscyh telling S that yes it's great he's taking more control and, on the other, the nutritionist insisting he isn't ready (which I agree with). Plus, because of this, S is getting some pretty dreadful mixed messages. So much for 'all singing from the same hymn sheet'...

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... S 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.

My response to replies:

Thanks everyone. 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 comp last year, but I'm really worried that this year he will flip and something horrible will happen as his ED-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 Thurs when things can return to "normal" with any luck and I can concentrate on kicking ED out of our lives.

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

For all I know she may be doing a wonderful job, in a low key 'softly softly' sort of way... after all, S has definitely improved over the past 3 months... and, as the school nurse says, at least S 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.

My response to replies:

Yes, the staff at school have been brilliant. Meanwhile S 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!

S 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 S - 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!!!!!!!

My response to replies:

I've had a very stressful week. S 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 S get on with things his own way] over and over again while S 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 nutritionist, 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 S present and also move our nutritionist appointment forward from next week to this].

And I know on Fri when we see the psych she will whisk S off to be weighed followed by a session between her and him while H and I see the nurse (who never seems to pass our concerns on to the psych, 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 S, H 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 H 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!)

My response to replies:

Tomorrow is the weekly weigh-in and S's psych session. H and I plan to grab the psych before she disappears in a puff of smoke to set up a private meeting between us and her, without S, 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 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, S 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 psych zaps in first with a "carry on as you are and just try to eat a little more" type of thing, then S has agreed with me that I can monitor his intake from a calorific point of view to check he's getting sufficient calories. He agrees that he needs at least 2700 to move forward and is happy to stick to this. So hopefully whatever happens tomorrow I will feel more confident that at least some element of control has been regained.

But, importantly, H and me need to talk to the psych 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 psych and her team must be doing some good.

But the biggest issue really is addressing the severe social anxiety problems. S 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...

My response to replies:

At Friday's weigh-in, S 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 nutritionist 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 psych!!! But S is starting a weekly anxiety group run by CAMHS at their IP facility next week. We are also arranging a meeting between the psych, H and me for next week to take stock of everything.

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

My response to replies:

I should have known better. Took son 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...

Phew! We've come a zillion miles since 16th May 2010, hey!!!!! BIG SMILE!!!

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