Friday 5 May 2017

Oh how I can feel the desperation, fear and helplessness I felt back then!! A post from 23rd June 2010 on the ATDT parents' forum.

This truly was the start of the hellish summer of 2010. My 16-year old son Ben was sliding downhill in both weight and mood. I felt increasingly gagged by CAMHS and under instructions to take a back seat, to not talk about food and to focus on things that were "helpful" to Ben instead.

It seemed as if it was very much Ben, CAMHS and the eating disorder versus me. The triangulation continued with my husband who was also taking sides. And much of this in-fighting was done in front of Ben. The eating disorder loved it!!

It is so very important with an eating disorder that everyone - parents and treatment team - form a united front against the eating disorder. But, in our case, it simply wasn't happening. Meanwhile, I was becoming increasingly terrified and desperate, as if the rug was being pulled out from under my feet.

Over the following months my mind would clunk down several levels and arrive at a dark place where no parent should ever have to go: a state of mind where, with ice-cold horror, you accept that you may lose your child. A deathly dark place where it becomes a case of "when" and not "if".

It was a terrible time and God only knows what I would have done if I'd never discovered the support and love from the parents on the Around The Dinner Table Forum. It was a true life-saver.

I thought it warranted a new thread... Charlotte and a few others will know what I mean when I say we had another night like the one we had a couple of weeks ago (think "roof"). Only this time my husband is working away so it's just me...

No roof, but an email to a friend, distressing enough to have the friend's mum calling me to warn me something was a foot. There resulted THE MOST TERRIBLE NIGHT with the eating disorder at its most "magnificent" and "satanic". Me, on the phone to the emergency doc asking for advice, but Ben refusing to go to A&E (ER) to see the psychiatric team.

My husband phoned half-way through and tried to talk to son to bring him out of his mood, then I took the phone and my husband started to blame me for these eating disorder moods because apparently everything would be easy going and run smoothly if it wasn't for me "going on about food", so these outbursts and moods only happen because of me.

And he's banned me from talking to my "cronies on that forum" because "what do they know? All situations are individual and everything they say goes against all the professional advice" (i.e. CAMHS' advice).

So I'm banned from mentioning food ("How do we treat an eating disorder and not mention food?" I asked.) He just wants to let Ben carry on as he is. If he gets bad enough to be admitted as an in-patient, then so be it, let the professionals deal with it because "they know what they are doing and you obviously don't!"

I ended up hanging up on him as it was blame, blame, blame... and now every time we have one of these eating disorder fits, he's going to blame me. And no way will he look at any of the info you send through... he hates you all!

In the end Ben went to bed in a fake relaxed mood (undercurrent still there...). The eating disorder was no doubt jubilant at the fact I was surrounded, General Custer Style, enemies around me, all fighting on the eating disorder side.

I am in an impossible situation. Today I'll try again to get hold of CAMHS but this time to insist that I believe Ben is at risk and insist they write a prescription for anti-depressants. Then I need to persuade Ben to take them (which will be impossible).

Meanwhile what do I do? This could be threatening our marriage as my husband blames me for Ben's outbursts and accuses me of "going against all the professional advice" because the CAMHS team "obviously know what they're doing and look what happens whey you try to do it your way".

This was after having agreed with Ben that we'd go back to the eating plan if he loses weight again this week. At the end of the evening Ben denied agreeing to it - and refused to do so saying he'd laugh in my face if he actually put on weight this week. And meanwhile he's seeing the triangulation between me and CAMHS, and last night between me and his Dad.

Game, set & match to the eating disorder, definitely. And I've no idea what to do now. No idea. Feel totally and utterly defeated with everyone against me (except you all, of course...)


The CAMHS team knows I don't see eye to eye with them and said as much today when we popped in briefly in a bid to get them to try and get my son to speak when he had shut up shop completely today.

He walked out of the session and the psychiatrist told me to my face that she thought I wasn't completely happy with the treatment so I told her we're just going round in circles and not getting anywhere.

My main aim today, though, wasn't to talk about how we can all get on the same page and advance forward, it was other more urgent stuff and in a curious way it seems to have slightly pulled my son out of his dark mood though it didn't stop him barking at me to make sure I used no more than one tbsp of oil in our evening meal and generally cut down as he has been generally doing since he "took responsibility" for his own eating.

However I have it on record now that the Eating Plan will be back if he's lost weight when we go for his proper CAMHS session tomorrow - and no doubt then all hell will break loose as we know the eating disorder hates eating plans. Next week I've insisted on a family meeting with a session of just husband, me and CAMHS to thrash things out.


Apparently Ben has lost a little bit of weight (how much, I wasn't told...). But yesterday CAMHS weren't "unduly concerned" about this weight loss as, despite his consistent weight loss recently, he is "nowhere near what he was when the treatment started" which, I take it, is a "good sign because he's done so well". (Note, I write all this with gritted teeth...)

Now, according to CAMHS we need to take the focus off the eating and concentrate on the psychological side of recovery because "I think it's time focus less on the eating side of things and more on working together as a family to see what is helpful to Ben and what isn't".

And, it seems from what they have told my son, that I am probably the reason why he got anorexia in the first place - by being an overprotective mother and by passing my own anxieties to my son. (My teeth are grinding themselves down now, they're so gritted...)

Worse, according to my son this morning, CAMHS said that, for him and his build, a weight gain of 0.Xkg a week is totally unreasonable and we shouldn't expect that. (Despite the fact that, when I was in control of the eating plan, he gained weight consistently at that pace, often more.

And despite the fact that they don't know what his build is - they never saw him playing No 3 in the school rugby team! As Charlotte said on my other thread, if he played rugby at all now, let alone No 3, he'd be snapped in half...) (Teeth are now ground down to the gums...)

Oh, and because it's the summer, apparently we should take things "a bit easier" all round... (Get me some false teeth will you...)


Been up since the crack of dawn this Sunday morning... couldn't sleep, I was so wound up about it all, especially following our evening meal yesterday which catapulted us back at least 8 weeks - and when we saw the photos of our son at the (surprisingly successful) school prom, looking so thin and pale, even my husband realised that we're getting nowhere.

However he had a caveat which was that maybe CAMHS has some "hidden agenda" as he calls it whereby they concentrate on working on the reasons behind the eating disorder before working on the re-feeding which, hopefully, should come naturally as a result of the reasons behind eating disorder being sorted out. NB I HASTEN TO ADD THAT THIS IS WHAT HE THINKS, NOT ME, as my gut instinct plus all the info / books I'm reading say it should be completely the other way round!!!!!

Meanwhile Ben is refusing to speak to me about food AT ALL because of CAMHS criticising me for "going on" about food and feeling we "should focus less on food and more on what is helpful to son as regards how you and your husband approach this and talk to him". And all his old little eating disorder tricks and behaviours are coming back... up to now they were gradually slipping back into his routine, but over the past week it's as if the floodgates have been opened and - woosh!!!! - in they all come.

And meanwhile he lost weight again on Friday (think I said that) so since he took back control of his own eating at the insistence of CAMHS 6 weeks ago he has only put on weight during ONE of those weeks; the rest he's lost it.

My alarm bells are ringing so loud I feel as if I'm going to explode.

We are insisting on a private meeting with CAMHS this week - half an hour of thrashing it out on Friday.


Meanwhile I'm heartbreakingly watching my dear son slide downhill...

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