Wednesday 28 December 2016

A tricky few days thanks to my C-PTSD...

I can only say that the C-PTSD (Complex Post-Traumatic Disorder) came on with a vengeance from sometime on the evening of the 23rd until early evening on Christmas Day itself. It was quite frightening as I have never felt like that before: raging PTSD symptoms on full pelt - the works. And I had no control over it. Well, that's not strictly true. I had a choice: either to hide under the duvet for 48 hours or emerge and 'do business as usual'. I chose the latter as I didn't want to spoil everyone else's Christmas and we were entertaining the family at our house.

Friday 23 December 2016

A not so 'silent night' (or day). Woohoo, it's Ben's birthday!

It's Ben's 23rd birthday today. Before he developed anorexia back in 2009 this day was usually loud and noisy with the sound of umpteen boys laughing, yelling and generally messing around up in Ben's attic room. You see, Ben's birthday parties were legendary. Indeed so many friends were invited that his parties had to be held in two shifts - countless friends one day followed by countless other friends the next with a sleepover inbetween. Then, during the years of the eating disorder, the house fell silent - apart from the final birthday sleepover when his anorexia had begun to rage and we had Ben hurtling downstairs in the middle of the night screaming and weeping because something had upset him. The following day was subdued as the boys' parents collected them from our house. The contrast between emaciated eating disordered Ben and his normal friends was heart-breaking. His friends stopped coming to our house after that and Ben's birthdays were solitary affairs with just the family. I remember his 18th birthday being especially poignant as he told us how down and depressed he felt - to be 18 and have no friends to celebrate with...

Boys get eating disorders too, you know!!

Someone please hand me a megaphone because I want to yell out loud that MEN AND BOYS GET EATING DISORDERS AS WELL AS GIRLS AND WOMEN!!!!! Because, in this study that was pointed out to me this morning, it's all about women and eating disorders. Again. No mention that men and boys struggle with anorexia, bulimia, etc, too.

Tuesday 20 December 2016

Surviving Christmas / The Holidays when your son or daughter has an eating disorder

Needless to say, the combination of Christmas / The Holidays / Hanukkah or whatever your festive celebration and an eating disorder like anorexia or bulimia can be a nightmare. No, not 'can be'; it IS a nightmare. I know. I've been there, done it. I've watched my son starve himself in the run up to "all that food" and then meticulously check how much he ate on Christmas Day, counting calories to ensure he didn't 'overdo it'. I've watched him eat a little too much and then punish himself afterwards for being "greedy" and "binging". I've been on Serious Red Alert in the knowledge that the slightest thing could result in banging, crashing, yelling, moaning and slamming his head against the wall.

Monday 19 December 2016

Dr Julie O'Toole, I want to shake your hand about the misuse of BMIs for diagnosing eating disorders

I am LOVING Dr Julie O'Toole's blog and, in this recent blog post, she echoes what I have said about BMIs being used as an indicator of the seriousness of an eating disorder both at diagnosis stage and throughout treatment. She gives a terrific example of how reliance on BMI charts could prove potentially dangerous when assessing certain adolescents, especially those whose pre-morbid BMIs were above the so-called 'norm' yet who ate healthily (i.e. they didn't overeat). The same could apply to young people who carry a lot of muscle e.g. many males. Say the individual then goes onto lose a substantial amount of weight very quickly (for whatever reason), begins to get hooked on the idea of continuing to lose weight and gets taken to see the GP or pediatrician. The GP calculates the patient's BMI and the only alarm bells that are ringing is that this patient's BMI is too high and they might need to lose weight. See why this could be dangerous? Especially if the patient is presenting with typical eating disorder symptoms?

Excellent advice on how to weigh an eating disordered child

Every week directly before our hourly CAMHS session Ben was weighed in an ante room. He was told his weight. It might have gone up slightly - or down. If it had gone up, even by a tiny amount, the entire CAMHS session would be hi-jacked by panic and anxiety that his weight was ballooning out of control and that we were "making him fat". Worse, that his weight would continue going up and up without ever stopping and he might explode, Mr Creosote style. As a result he would spend the following week making adjustments to ensure that the needle was pointing in the 'right' direction at the next scales session.

Does anyone out there still believe that parents cause eating disorders?

If so, I would like to direct them to this superb article by Julie O'Toole, MD - Founder and Chief Medical Officer, Kartini Clinic for Children and Families, which sets out the rock-solid scientific evidence for eating disorders being brain disorders and that "parents are part of the therapeutic solution, not the source of the problem". For Dr O'Toole, the "take-home message that biology sends us is that not only do parents not cause eating disorders, schizophrenia, autism, and other brain disorders, they couldn’t cause them if they wanted to".

Sunday 18 December 2016

Remembering my dear friend Sue - the little woman with the MASSIVE heart

Sue (left) and me (right),
Christmas Day 2011
A week today it will be Christmas Day. On  Christmas Day 2011 I invited my dear friend Sue and her husband round for Christmas lunch. Sue's secondary breast cancer had got worse. It had spread all over her body and she was worried that she simply wouldn't have the energy to 'do' Christmas that year. So I invited her round to ours for lunch and for as long as she felt able to last through the afternoon. Five years on I am remembering Sue, that little woman with the massive heart who took me under her wing in 2010 when my son's eating disorder was making it really difficult for me to cope with life. In order that newer followers of my blog can learn what a fantastic, awesome and totally unique woman my friend Sue was, here is a blog post I wrote in May 2012, five months after this Christmas Day:

Let's try FBT first - it's a no-brainer!

As I say in my last blog post: I am not saying that FBT (Family Based Treatment) is a 'magic bullet', nor that it suits everyone. But there appears to be more evidence for FBT than AFT (Adolescent-Focused Individual therapy). And, when faced with an illness that could kill your child, I'd bet my back teeth that any parent would want to try the treatment method for anorexia with the most evidence of success? It's a no-brainer, really. Like, why in a million years would you choose to initially go for a treatment model that didn't have as much evidence to support it? Especially when, with an illness as deadly as anorexia, your child's life could be at stake?

Why FBT is being adopted in some NHS authorities as first line treatment for young people with anorexia

A couple of years ago when I went to Glasgow to hear James Lock (of Standford University) speak about the evidence for FBT (Family Based Treatment) as an effective treatment model for adolescent eating disorders, I found myself wanting to jump up and down with agreement. But at the same time I also felt immense sadness and fury at the fact that back in the day we, along with numerous other adolescents and their families, were not offered FBT. Back then many UK treatment teams were still adopting the more traditional Adolescent-Focused Individual therapy (AFT) for adolescents with anorexia nervosa. Thankfully times are slowly changing and these days more and more local health authorities are rolling out FBT as first line treatment for young people with anorexia - our home city included. Indeed the evidence for FBT goes back to 2010 (and even further; Maudsley family therapy was initially devised at the Maudsley Hospital in London two decades ago) when, according to Prof Lock, "[researchers found that] family therapy for anorexia more effective than individual therapy".

Saturday 17 December 2016

Feeling as if the whole world is against you and your gut instinct as a parent

As a parent, you know your child better than anyone else and Ben and I had always been close. So when he got more and more sick with the eating disorder in the early summer of 2010, despite four months of CAMHS treatment, my gut instinct was screaming out that things were WRONG!!

The triangulation gets worse...

How I wish I could go back to late June 2009 and hug the 'me' that I was then. Judging from my posts on the Around the Dinner Table forum, I was desperate. Truly, utterly and completely desperate, feeling totally powerless and lost. This was the month that my son 'took back control' of his own eating when it was decided that 'Mum's Eating Plan' should be dumped. It was also the month that the dietitian was withdrawn.

Tuesday 13 December 2016

26 months of eating disorder treatment. Total weight gained? 1kg.

Body dysmorphia drove Ben
to believe he'd been fat before
the eating disorder struck
It is as clear as day to me that my son should have gained a substantial amount of weight during the 26 months of eating disorder treatment with CAMHS. My gut instinct (as well as common sense) told me that we needed to get his weight back to where it was before the eating disorder struck in order for the weight restoration element of his eating disorder treatment to be considered complete. Remember, contrary to what he'd been telling his therapists over and over again, Ben wasn't in the slightest bit fat before the eating disorder developed. Yes, he'd had quite a bit of puppy fat at primary school but that was yonks ago. In 2009 when Ben's eating disorder began to emerge, he was 15.

Triangulation - the eating disorder's favourite state of affairs

Back in 2010, as we neared the point where my son was given control of his breakfast, lunch and snacks and 'Mum's Eating Plan' was dumped, there was some super-triangulation going on. By this I mean that different people were saying different things. Eating disorders love this. What eating disorders find tricky is when everyone - both parents and everyone in the treatment team - is 'on the same page', presenting a united front against the eating disorder.

Monday 12 December 2016

The problem I had with getting my son to eat

By March 2010 I was getting desperate and although we'd been seeing CAMHS for a month, I wasn't getting any support with the eating plan that I'd asked them to give me. It was jam-packed with all kinds of things that my son wouldn't eat in a million years. The same goes for the self-help eating disorder books I was busy reading.

On the eighth day of Christmas, the anorexia recovery gave to me... “Eight Christmasses since our first ED Christmas”…

2009... 10... 11... 12... 13... 14... 15... 16... It's eight Christmasses since our first Christmas with the eating disorder. At Christmas 2009 my now 16-year old son, Ben, was on the waiting list for CAMHS treatment for his eating disorder; he'd been on the waiting list for a month and it was a couple of months since the GP had sent off a referral. Ben was seeing a private CBT therapist in a bid to stop his escalating eating disorder falling off a cliff. Despite the therapist's best efforts (ironically the same therapist I'm currently seeing for EMDR therapy), it didn't work. Ben got worse. By the New Year of 2010 he was a shadow of his former self. He'd become volatile and violent, he'd developed a slow, low, monotone of a voice - 'the voice of ED', as we called it, his eyes were dark and blank, he was painfully thin, his skin was dry and transparent, and he had bruises on his back where he'd put his bony body through umpteen sit ups which he did several times a day.

Sunday 11 December 2016

The letter I'd love to send to Ben's CAMHS psychiatrist but of course never will

Dear Ben's Psychiatrist,

First let me say that the bouquet of flowers we gave you on our final visit in 2012 really was to say thank you - genuine thanks for being such a nice person, for going 'over and beyond the call' when it came to CAMHS sessions running overtime and for truly empathising with my son. As the months went on, any professional disinterest evaporated. I believe you really cared for my son. I know you liked him. And I hope I'm right in saying that, throughout those final months of CAMHS treatment for my son's eating disorder, you treated me as an important and valued part of the treatment team. You listened to what I was saying, especially after we introduced our 'contract' and you saw it was working.

On the sixth day of Christmas, the anorexia recovery gave to me... “Six month waiting list angst - hopefully part-processed”…

This time we're talking about me. Four years ago round about now I began to feel a bit strange - kind of numb and dissociated from what was going on around me. Eventually this was diagnosed as Complex Post-Traumatic Stress Disorder (C-PTSD). Anyway, as you may know, I've been receiving various therapies, private and NHS, and am currently undergoing EMDR (eye movement desensitization and reprocessing) which aims to 'process' some of the most troubling elements of the trauma. The element we've been focusing on most recently is the anger I feel / felt at how long it took for my son to be diagnosed with anorexia (see last-but-one post as to why he was never formally diagnosed with anorexia) and the various obstacles along my way e.g. GP, CAMHS waiting list (potentially up to 6 months, hence the tenuous title of this blog), etc. Suffice to say that although the anger will never go (of course it won't, it's only natural!), it should be a little easier for me to deal with now and here's why...

Saturday 10 December 2016

My scrawled comments on the letter speak for themselves

All over the letter I talk about in my last blog post are scrawled comments - my desperate notes for the next CAMHS meeting: How soon before my son can go as an in-patient? How much more does he need to decline? How do I stop him exercising? How can we get him to eat school dinners? Refusal to stick to calories on school days when "sitting around doing nothing". I can't PHYSICALLY force him to eat - what are you going to do because I CAN'T LOOK AFTER HIM, prevent self harm, etc, he is bigger than me. What if he continues to lose weight? One hour a week with CAMHS isn't sufficient! What is the plan? Where do we go from here? Reading between the lines you can kind of guess what was going on inside my head at that point and why I felt so very, very helpless and frightened.

Boys v girls when it comes to 'officially' diagnosing anorexia

I have a letter in front of me from CAMHS which was mailed to me at the end of that terrible summer of 2010 when my son's eating disorder and associated violence, volatility and dangerous behaviours were heading downhill at the speed of light. His weight was heading south, too. I have the weight chart to prove it. Terrified of where things were heading, I wrote to CAMHS and the letter I have in front of me is their reply.

On the fifth day of Christmas, the anorexia recovery gave to me... “Five million pounds”…

Back in April of this year I said to Ben: "I'm so proud of you, all these time-management skills and all that" (in relation to organising his final year's degree studying perfectly and not getting at all stressed. "What's brought that on?" he replied, suspiciously. So I told him I'd blogged about it and rambled on about how proud I was of him - and how many of these time management skills came as a direct result of those months that he spent studying at home for his GCSEs and A-Level examinations.

Friday 9 December 2016

On the fourth day of Christmas, the anorexia recovery gave to me... “Four life-saving letters: ATDT”…

Back in March 2010 I wrote my first post on the online forum that was to become a true life-saver for me and my family as we pushed to get our then 16-year old son through his eating disorder and out the other side: ATDT (Around The Dinner Table).

On the third day of Christmas, the anorexia recovery gave to me... “Three nerdy housemates”…

One of the most difficult problems to fix with my son's eating disorder was his social life and skills. Right from the start - that summer of 2009 when his emerging eating disorder began to be more evident - he had isolated himself from his friends. The boy who'd been so popular and whose birthday parties had to be held in shifts he had so many friends, became friendless and alone. As his anorexia got worse, he couldn't even bear to be in the same room as his peers. Basically, his eating disorder took over his life; there was no room inside his head for friends.

Thursday 8 December 2016

On the second day of Christmas, the anorexia recovery gave to me... “Two hearty breakfasts”…

I can't remember when my son first began to have not one but two breakfasts every day. I think it may have been back in 2012 as he pushed for recovery from anorexia after the introduction of our fantastically successful 'Contract' at Easter 2011. And, as far as I am aware, he has continued to consume double breakfasts ever since.

Wednesday 7 December 2016

On the first day of Christmas, the anorexia recovery gave to me... “A close shave with a train door”…

As my son's recovery from the eating disorder gathered strength and pace, there is one incident that stands out - an incident that, at any time during his eating disorder, would have freaked him out Big Style: the day he caught a train by the skin of his teeth, lost his ticket and successfully dealt with an irate ticket collector. This blog post from March 2015 can be found here.

Revisiting 'The 12 Days of ED (Eating Disorder) Christmas' from 2011

2011 was our third Christmas with the eating disorder. (My teenage son gradually developed his eating disorder over the spring and summer of 2009; then throughout autumn and winter 2009/10 his anorexia began to accelerate at an alarming pace.) At the end of November 2011 (when my son was on the road to recovery from anorexia) I began a series of posts entitled 'The 12 Days of ED (Eating Disorder) Christmas' based on our experiences over the previous 12-18 months. I only got as far as 10 days as more current issues took over the blog. However you can download a PDF of the 'The 12 Days of ED (Eating Disorder) Christmas' posts by clicking here - and if time permits I might do 'The 12 Days of ED (Eating Disorder) Recovery Christmas' for this year, hopefully completing all 12 days!!!