Monday 8 May 2017

Hmn... feeling a little murderous... - a post from 1st July 2010 on the ATDT parents' forum.

In June 2010 we received the bombshell that our helpful dietitian was being withdrawn due to funding issues. Very quickly the shock turned to anger and I posted the following (edited) thread up on the Around The Dinner Table Forum. I'd hired a private dietitian to replace her. However I quickly realised my mistake; the private dietitian simply didn't have sufficient experience in dealing with eating disorders and, on top of this, CAMHS were cross with me for going behind their backs and doing this.

Meanwhile I was so very, very angry about everything as can be seen below. I was also panicking and desperate; it was as if no-one was listening to me or taking my concerns seriously. It also shows how difficult it was to contact the CAMHS team, relying on the secretaries to pass on messages which they didn't always do. (Please note that I've removed any reference to specific weights, BMIs or calories.)

I am so mad I could strangle someone!!!!!

As you know, our UK NHS dietitian has been withdrawn so we're having to go private - and "the powers that be"[the NHS Commissioners] refuse point blank to let us keep her.

As you know, my son has lost weight consistently over the past 6 weeks after being handed back responsibility for his own eating. Last week CAMHS said that they weren't "unduly concerned because his weight is nowhere as near as low as it was when he started treatment on 18th February". (As you know, we've insisted on a private meeting with the psychiatrist tomorrow to thrash this out.)

I now have in front of me a print-out of my son's weight "gain" since he started treatment in February, provided by our dietitian at our final meeting with her today.

Contrary to what CAMHS said last week, he is Xkg LOWER than he was at the start in February. And last week when she made the above statement, he was X.Xkg lower than he was at the start in Feb. So I just don't get it.

AND that's not taking into account the fact he has grown in height since then. In real terms, his BMI has dropped from XX.X to XX.X in the 3.5 months we've been receiving outpatient treatment. I am sure you will all be in unanimous agreement that we should be looking at a significant WEIGHT INCREASE, not DECREASE!!!!!

All the above has made me SO MAD I think I mightn't just smash the rest of our dinner service this time, I might trash the whole house!!!!!

And later...

I am completely numb after our meeting. The long and the short of it is (and the psychiatrist didn't know I had planned this meeting as the secretary hadn't passed the message on or my email!!!! And we're not allowed to email or phone direct):

  • Yes she does Maudsley FBT (Family Based Therapy) but only when patients are close to in-patient status and she believes our son was taken on at a stage that was far less severe, hence the early decision to allow him control of his own eating.
  • She says my graph is misleading because it doesn't go down to Zero - it starts at XX.X BMI. By that she means that it wouldn't look so bad if there were loads of white space below it.
  • Yes, if my son continues to lose more weight she will step in and insist we take back control but in the meantime he should try to adhere to the extra XXX-XXX cals per day insisted on by the dietitian (ie we shouldn't take back control) (already we're seeing him chicken out of that, just one day on... with a pitifully small portion at teatime).
  • She says that, when compared to "the population as a whole" he is well within healthy limits so I shouldn't be so concerned (despite my telling her that his pre-anorexia weight was far, far higher, stuff about rugby, etc - and the secretary forgot to forward the pre-anorexia photos I sent through to her so she hasn't seen those yet).
  • And before long she was focusing on me and I suddenly realised she had diagnosed me as a kind of neurotic mother who, presumably, is worrying over nothing. 
  •  Meanwhile, although my husband was guns blazing on my side, he's now moving to CAMHS' camp saying that our son's situation is different from other people, so in a way the psychiatrist is right...
  • And there was loads more said that I can't recall because I am totally exhausted and numb.

But she didn't like it...

Mind you, neither did I.


We had a terrible time just getting him within the MINIMUM calories yesterday which the dietitian said is a no-negotiation RULE... not 1 calorie below XXX extra cals, she said, preferably XXX extra cals per day. We got to around XXX cals and he wouldn't budge. The eating disorder just won't let him and I have told that to the psychiatrist until I'm blue in the face.

I have to have a think about my next move with the psychiatrist as I woke up this morning (after a pretty restless night) realising my brain was actually on MAXIMUM and couldn't take any more thinking (especially when my husband started to ask me what tiles I fancied for the new bathroom... that almost tipped me over the edge...)

Also, I am fighting on this other front re. the dietitian so have started a new post to gather ammo to fight "the commissioners" (who have withdrawn the funding), get into the media and do just about anything else I can do to fight.

With my vacation looming in 2 weeks (ha ha ha, Ben was in a fit last night about eating on holiday... boy are we looking forward to that... NOT!!!), there's not much I can do on either front, but it's a good time to start gather ammo for both.

I've bought a large A4 notebook and at the front I'll make notes for my ammo to fight CAMHS and at the back I'll make notes for my ammo to fight the dietitian issue.

If I have any energy...

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