"The eating disorder fights back" - a second post from April 11th 2010 on the ATDT parents' forum.

Here is a second post from 11th April 2010 on the Around The Dinner Table Forum (which exists to support parents of young people with eating disorders). What this post demonstrates is the roller coaster nature of an eating disorder: one day things are HELLISH and yet the next there are chinks of light at the end of the tunnel followed by HELL again. It's a bit like a game of Cat and Mouse in that just when you think you're getting somewhere the eating disorder muscles in again and you're back where you started. It also demonstrates the similar roller coaster relationship that I had with the CAMHS team: one minute they were great and the next they were saying stuff that was potentially harmful. (Please note that, as with all these forum posts, I'm only posting my words, not those of the parents who responded, for confidentiality reasons.)

So there were, coming along swimmingly (as you'll see from my other threads) when - pow! - the eating disorder decides to fight back in a bid to get control of my son again.

The problem being that he's now within the "healthy" BMI range (albeit at the bottom end of it) and is putting on weight at what is really a "maintenance" level i.e. ounces, not even pounds.

Ever since we saw the psychiatrist on Friday (who was brilliant, actually...) my son has started to rebel, refusing to stick to the eating plan any longer, body checking, refusing to eat any fats of any sort, constantly arguing with his dad and me (the old irrational arguments that don't get you anywhere) and being in a generally depressed state of mind. (Because he feels he's gaining weight at a fantastic rate and is getting flabby. He wants to take charge of his own meals (no way!!!!) He also feels very tired, though the psychiatrist said this is because his body is still going through umpteen physiological changes as it tries to heal itself on the inside. She says this is totally normal, but he won't hear of it.)

We feel as if everything we've achieved has been given a real kicking as the eating disorder tries to get control again and drag our son back down to where he was.

It feels as if we're on an elastic lead and have plodded along the road almost at our destination when - ping! - the elastic pulls us right back to where we were a few months ago...

Help!!!!!!!!

And...

Thanks everyone for your replies.

Unfortunately we haven't seen the dietitian for over 2 weeks; our meeting with her last week was cancelled because she was sick. I've emailed her a detailed list of what my son had eaten over the past 7 days so she can hopefully work out that he's not getting enough fats / calories and convince him he needs more. Psychiatrist was concerned about his obsession with fats and his belief that his current levels of saturated fats are similar to what obese people eat... this from a boy that has virtually ZERO fat in his diet and refuses to eat anything with added fat, only things with natural fat in them (e.g. he's convinced that bread includes high levels of fats!!!)

Dietitian has never given us a target weight. However I live in dread of her saying he's "arrived" when it's blooming obvious to me that he hasn't.

Sometimes I feel as if we're stuck with this dreadful eating disorder thing forever...

PS I've got the James Lock book [Help Your Teenager Beat an Eating Disorder]. I'd say eating disorder is like climbing a mountain with loads of false summits...

And...

With us it was (and is in many cases) foods with fat in them. Our son has an irrational fear of fats. But today, having monitored exactly how much fat he is eating, the rational bit of him has agreed that, yes, in essence that makes sense - although the eating disorder is trying to negotiate a halfway house of keeping the fats where they are and not going any higher... Sorry, eating disorder, but I don't negotiate any longer...

With my son, like many of the teenagers on this board, it helps to "announce" in advance what I'm serving up. I do a printout of my spreadsheet, with the calories omitted of course, so he can see what's on the menu for the day. I've been introducing fear foods into the diet gradually to avoid anxiety.

But I'm definitely aware that I should be more forceful - and find it does work when I am. So that's the way things have been today after the weekend's eating disorder fighting back. After he refused point blank to eat his breakfast, he eventually ate it (mind you, I had to threaten to call his dad...) And peanut butter is still on the agenda for breakfast tomorrow with a cinnamon and raisin bagel (plus cereal, etc).

And...

Well how about this...!!! Yesterday morning he ate a peanut butter- covered cinnamon and raisin bagel for breakfast. Then he went into town and (yes I do believe what he said about what he ate there is true, he even offered to send me a photo via his phone to prove it and he came back with the packaging) had a mid morning snack (proper drink, etc) followed by a soup and baguette in Pret and an iced yogurt with lashings of honey in Bagel Nash. Then he arrived home with a choccie bar from Thorntons (not yet eaten) AND a jar of hazelnut spread (like peanut butter BUT HIGHER IN FATS AND CALORIES!!!) and had that for breakfast today on a bagel. Last night we had a very calorific curry I cooked (you can slug loads of oil in when cooking curries!!!) and he made a daal which included oil.

An incredible number of victories in just one day!!! The other month he went into total meltdown in Pret and was unable to buy anything. He had to walk out, in a terrible state - one of our worst and lowest ever days with the eating disorder. So yesterday's complete anxiety-free visit was amazing.

Trouble is, I'm now waiting for the eating disorder to fight back again because I know it will, the minute the eating disorder 'whispers' to my son that it's all landing straight onto his belly in the form of FLAB.

But even so... victories... YeeHa!!!!!

And I do believe he ate all the above and didn't bin or leave it. I really hope he didn't bin or leave it...

PS I forgot to say... he also came back with some prezzies he'd bought with his pocket money for me and his dad to say thanks for putting up with him through all this... I said the best prezzie of all will be when he's completely recovered...

And...

[Name], I can totally identify with what you're saying! The anxious tension waiting for the eating disorder to rear its ugly head again and then if it does, not being able to handle it - with me, I have to suddenly take time out and drive somewhere convinced that my son will NEVER recover... EVER!!!

But then a day or so later things improve - and, hey, they often improve more than they improved last time round.

One thing, though. There seems to be a pattern whereby whenever we see the psychiatrist or dietitian, my son seriously freaks out and rebels afterwards and is depressed for a day or so. Is this normal? Is it GOOD (i.e. my son will eventually realise that what was said makes sense) or BAD (most of what he seems to bring out from the meeting is related to the weighing scales session and his weight gain as opposed to anything else that was said - or at least that's how it seems...)?

And...

You are all wonderful, as ever... thanks!

Lots of stuff here about not letting our teenagers take control of their own eating too soon. How soon is too soon, I wonder / worry? At the moment I have total control over his breakfast and I draw up a daily food plan spreadsheet (I don't print out the calories column of course...) But often my son will switch a snack, for example, to one of the same calories, just something different he fancies. Should I let him do this? Also, mainly because this entire thing is so exhausting when you're trying to run a home, family and still cling onto your home-based business by the skin of your teeth, I do let him do the occasional bit of cooking or baking, but not much and nothing like dinner or lunch, mainly snack items or puddings. Should I do this too?

Bit worried that I may be colluding with the eating disorder by doing this... or it might be harmless. Would welcome your advice from your own experiences...

Thanks again.

And...

We went to see the psychiatrist this morning and I feel a bit uncomfortable about it... it was a one-on-one session with my son so I sat in the waiting room. My son came out all smiles, eager to tell me that the psychiatrist felt he'd arrived at his weight restoration point and that it was high time we adults stood back and let him take more control - in fact she wants a family meeting with us because (according to my son) she feels we are being too strict and should relax our 'hold' more... My son loved that, as you can imagine!!!! In fact it's the first time he's come out of a CAMHS meeting in a good mood!!!

Hmn... as far as I'm concerned the jury is out on that one... we've known our son all his life and have been with him 7 days a week on this hellish journey. OK some of what she says may be true and we do need to relax a bit (because naturally we're scared he'll 'ping' back into the depths of anorexia and will naturally eat less than he needs...) To be honest, I think it's early days and she's been a little too confident...

Suddenly I feel it's my husband and me versus my son and the CAMHS team... and also I'm scared they'll discharge him too soon...

Just wondered what you guys think???

And...

I do get the feeling the psychiatrist doesn't listen to us parents and sees us as needlessly worrying and 'fussy' / paranoid. I've felt that since the start, really. I don't think she likes me!!!!

My son has been in a very sunny mood all day and is actually looking like a 16-year old boy should look these days. I found an old photo of him taken back in November and the difference is incredible - did he look TERRIBLE back then, or what!!!!

Also we went clothes shopping this afternoon and he actually asked me to swap the XS size tee shirt for a Small because the XS was too tight, and he didn't bat an eyelid. A few months ago he would have freaked out that he was getting fat.

Also, he is planning to go back to school a week on Wednesday and looking forward to having a laugh with his mates. A bit different from the day I smashed the plate on the floor after getting 22 distressing texts from him - the day I took him out of school because he couldn't handle it, or his being with his friends.

I think going back to school will be the telling time seeing as school was a key driver in how all this came about and he's been in the artificial environment of home for a couple of months or so. Not only will he have everyone staring at him (as kids are prone to do....) but he'll have to cope with school dinners and all the other stuff that used to freak him out...

However I really am getting the feeling we are seeing the light at the end of the tunnel. But my husband and I will remain ultra-vigilant, if not as obviously so as in the recent past to gauge whether what the psych says is true or not.

And...

I have copied and pasted your wise advice for future reference when we have our aforementioned Family Session. I really appreciate it!!!!!

Yesterday the psychiatrist handed me a photocopy of a printed summary of Janet Treasure's kangaroo / rhino / jellyfish / St Bernard / dolphin carer personalities - but I have already read the whole book [Skills-based Learning for Caring for a Loved One with an Eating Disorder: The New Maudsley Method] so nothing new there... but it does imply our CAMHS follow the Maudsley Method though nothing has been said (we really don't get any time to ask these questions at our very brief one hour sessions (now moved to fortnightly instead of weekly...) and she won't give me her email; I have to email the admin woman who hopefully passes stuff on, though I never get any acknowledgement from the psychiatrist that she's read what I send her...)

My son gets on very well with her, though, which is important - easier for her to win him over to a non-eating-disorder way of behaving.

[Name], we had to wait MONTHS for our first CAMHS session, too, and went private to fill the gap - with a CBT therapist who was OK, but very difficult to pin down for an appointment! Plus we saw a very fierce private male psychiatrist - I think I prefer the CAMHS one to him!!!! 

So, during April, the eating disorder went up and down like a roller coaster as did my relationship with the CAMHS team - and I never was sure which treatment model they were using or if they were just 'winging it'. What I do know is that I wasn't included in every session; often it was a one-to-one between my son and the psychiatrist. Sometimes I'd be called in at the end for a summary; sometimes I wouldn't. And sometimes I'd be given what were called 'parenting sessions' by the CAMHS nurse which, by the nature of them, immediately made me feel really guilty, as if we were the cause of the eating disorder and were being given 'parenting sessions' to show us how we should act as parents

It was very difficult for me to pin down either member of the CAMHS team after a session. During the session, if I was included, I was only too aware that there were just 60 precious minutes which wouldn't give me time to voice my concerns and, anyway, I didn't want to do this in front of my son for obvious reasons. Then at the end of the session they'd disappear as if in a puff of smoke.

The only way I could contact them outside the sessions was to email the 'gatekeeper', the lady at the desk, who would hopefully leave a message in their pigeon hole. As I said above, I was never sure whether or not they received my messages. We weren't permitted to contact them direct. It was almost as if parents were viewed as a nuisance.