"Unpleasant scenes at A&E......" - a post from 8th October 2010 on the ATDT parents' forum.

October 2010 was a pivotal moment in both the CAMHS eating disorder treatment and Ben's attitude towards recovery. But it began badly. One morning the (other) school nurse called me to say that Ben had fainted in the sixth form common room and his pulse was abnormally low (again). There followed a massive battle for me to get Ben to A&E because he refused to go, claiming he had faked the fainting.

Why I hate BMI as an indicator of the severity of an eating disorder - or even that an eating disorder exists in the first place

In my PTSD sessions we are going round and round in (necessary) circles as my head tries to process the issues I was having with CAMHS during the first 7 or 8 months of my son's eating disorder treatment. One of the main pictures I keep getting in my mind is of the CAMHS nurse twiddling her cardboard BMI (Body Mass Index) indicator wheel every week. For CAMHS, as with many medical professionals, BMI is still trusted as an indicator of healthy weight, despite the fact that - at a so-called 'healthy BMI' - an eating disorder can be raging.

Parent support: what helped us and what might help you

The ATDT forum

I've been thinking about the support that was available for parents when my son, Ben, was sick with anorexia - because I, like most parents, was desperate for help even if that help was just a sofa, a cuppa and a friendly ear. I really hope that there is more support these days because parents really shouldn't have to go through this distressing, confusing and life-changing experience alone.

It's approximately 8 years (spring / summer 2009) since Ben first began to display signs that I now know were relatively typical of a male descending into an eating disorder: anorexia, in his case.

Notes from my meeting with CAMHS in September 2010

In September 2010, I requested a private meeting with the CAMHS psychiatrist. It had always been really tricky to pin down members of the CAMHS team outside of Ben's treatment sessions when he wasn't around. Usually it was a case of grabbing them for a few minutes as they were about to dash off. So I went along to this meeting armed with a clear list, agenda-style, of what I needed to talk about. I remember asking the psychiatrist how long we had, expecting her to say 20 or 30 minutes. When she said "an hour" I nearly danced with joy.

"Son back in school but still isolating himself..." - a post from 20th September 2010 on the ATDT parents' forum.

In September 2010, my son Ben went back to school after months of being at home - into the Lower Sixth Form. It wasn't a great success. The eating disorder was still raging. He found it difficult to handle the fact that he was "sitting around doing nothing" (i.e. not burning up so many calories). He found it difficult to integrate back into his friendship group and isolated himself by studying frantically in the library during breaks and free periods.

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.

"Still can't get son to eat enough..." - a post from 8th September 2010 on the ATDT parents' forum.

The summer of 2010 was a nightmare on so many fronts - and if you drew a straight line on his weight chart from the middle of May to the date I posted the following on the Around The Dinner Table Forum (8th September), you would see a steady drop in weight. With this came a deterioration of mood and behaviours yet CAMHS were insistent that Ben had arrived at a stage where he could manage his own food intake. In fact they were keen for him to do this right from the start.

"Mum hatred, threats to run away, etc" - a post from 3rd August 2010 on the ATDT parents' forum.

The wonderful Charlotte Bevan

Just in case you're wondering who 'Charlotte' is... the mum I refer to in these early Around The Dinner Table Forum posts... she is, or rather was, the most amazing and supportive fellow-mum you could ever imagine. Before she passed away from breast cancer in January 2013, Charlotte Bevan supported many, many families, not just here in the UK but abroad, too. She was almost invariably the mum who popped up first with support, help, advice and a shoulder to cry on whenever new members to the ATDT forum posted for the very first time. She would also call us on the phone whenever we posted up an emergency cry for  help. On top of this Charlotte was constantly advocating for better treatment and a whole range of other things to help families facing an eating disorder. To find out more about Charlotte, click here to go to the post I wrote after hearing about her death, back in January 2013. Meanwhile, below is a post I wrote on the ATDT forum on the 3rd August 2010, during the 'summer from hell'.

At the end of my tether in August 2010...

As the summer of 2010 went on I became more and more depressed, exhausted and frightened. We weren't having our regular CAMHS sessions as the treatment team were taking their own vacations. I was also having to rely on emails sent to the CAMHS secretaries if I had any concerns. Following our return from France, I sent the following message to CAMHS as a summary of where I felt things were heading.

"Holiday / vacation... and the eating disorder came too..." - a post from 2nd August 2010 on the ATDT parents' forum.

In early August we arrived back in the UK after the 'holiday from hell' in France and I posted the following on the Around The Dinner Table Forum. I'd been instructed not to talk about food; indeed to take a break from the eating disorder for the duration of the holiday. So every time I mentioned food Ben screamed these instructions at me. Yet right from the 'word go' we had serious issues starting off with a nightmare lunch at a pub en route to Portsmouth.

It was one heart-breaking experience after another culminating, on arrival at at our hired villa, an Almighty meltdown which resulted in my husband in tears threatening to return to the UK the following day. And so it went on... meltdowns... shouting... suicide threats...

"Screaming, shouting and bullying" - a post from 5th July 2010 on the ATDT parents' forum.

I was getting so very, very tired, feeling utterly powerless and my morale was at rock-bottom. At CAMHS I was being given the impression that Ben's eating disorder wasn't too bad yet the hours... days... weeks... months... I was spending with him at home was telling me something very different. Although my gut instinct screamed out for me to do something... to take action and insist that Ben eat... I was getting all these messages that I should be doing the exact opposite and taking a far more relaxed attitude about food: to trust Ben to be eating for himself and to shut up about food.

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.)

Something's been bugging me all weekend...

Of course I can never, ever expect to read every fellow parent's blog about eating disorders. The same goes for any books they may publish or articles they may write. But I do know why I, and the other blogging mums who I know, do it. To raise awareness of eating disorders (in my case that boys get eating disorders) and to help other parents identify symptoms, get speedy help and to find support from other parents who've 'been there, got through it'.

No other reason. 

The animal instinct to 'protect our young' kicks in when we see our child suffering

I am not a scientist or a physician, but - as a mother of a boy who's been through and recovered from anorexia - I know what a punishingly difficult illness this is to treat successfully. I've read a ton of stuff over the last 8 years as well as attending eating disorder conferences, talking with eating disorder professionals and mixing with other parents who have been through an eating disorder in the family. What comes across clearly is that some treatment models work for some families whereas other models work for others. And some are more evidence-based than others, especially when it comes to treating adolescents with an eating disorder. So, to me, it's not rocket science that clinicians employ the evidence-based model first and if that isn't working, then try something else.

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!!

"De da de da de da... ED still going strong..." - a post from 14th June 2010 on the ATDT parents' forum.

By this point I was getting tired - as can be seen from the following thread which I posted on the Around The Dinner Table Forum. I'd arrived at the not-so-ideal stage of bribery and threats, mainly because I simply didn't know what to do. Sometimes I felt CAMHS was on my side while at other times I felt as if it was the CAMHS team, my son and the eating disorder ganging up against me.

Keeping your child safe when they're a danger to themselves

I wish I could say that when my son was under the control of the professionals (GP, CAMHS, the local hospital, etc) that I trusted them implicitly to keep him safe. But various things happened along the line that removed this trust. Then the other month I heard the tragic news about a friend's daughter who had been under the care of the professionals for her eating disorder yet had managed to take her own life. This week the media has been full of the equally tragic news of 15-year-old Pippa McManus (coincidentally a friend of a friend) who, just five days from being released from The Priory, threw herself under a train.

The urgent letter I emailed to CAMHS that morning

In an ideal world, I'd have picked up the phone first thing in the morning and talked to the CAMHS eating disorder treatment team. But we weren't allowed to call them direct; we had to send emails and hope that they'd get passed on. So I sent the following email and called the CAMHS receptionist with the urgent instruction to make sure our psychiatrist saw it right away. Thankfully she did and later that day we were sitting in front of her, as described in my previous blog post.

What happened that night...

On the 3rd June 2010 I posted on the Around The Dinner Table Forum (for parents of young people with eating disorders). The subject was that the dietetic support had been withdrawn (from my son's eating disorder treatment) and you can read what I said in yesterday's blog post. That evening... or, rather, at some unearthly hour the following morning... I posted on the forum again. I was distraught because of what had happened earlier that night.

"Dietitian axed from our CAMHS team" - a post from 3rd June 2010 on the ATDT parents' forum.

So, back in spring 2010, there we were with this triangulation going on - the dietitian appearing to say one thing and the rest of the CAMHS team saying another. Then on 3rd June I got a shock. Our CAMHS dietitian announced she'd been axed from the service. I burst out into tears in front of her! And when I got home I posted on the Around The Dinner Table Forum (before writing letters of complaint to the NHS Commissioners who were unsympathetic).

Update on how the C-PTSD therapy is coming along (and Ben)

As you may know, I'm currently undergoing (private) Eye Movement Desensitization and Reprocessing (EMDR) therapy for the C-PTSD annoyance. So far, Steve, my therapist has been brilliant and everything is progressing OK. Generally I feel a lot better. The key word here is feel because, for so very many months (over a year... or longer!) I couldn't actually feel anything at all. It was as if my brain was numbed and I was simply going through the motions of just about everything in life that involves feelings (stunning walks by the sea, cycling in the beautiful countryside, being with friends and loved ones...). At the same time I was in panic mode, on a kind of 'red alert', which is sort of odd when coupled with numb feelings, but that's PTSD for you.