March 09, 2010
My wonderful teenage son was handsome, confident and popular (especially with the girls!). He was also very sporty, a star player in the school rugby team and the fastest runner in the year. He was also admired throughout the school for his fabulous singing voice.
His ED became noticeable over the summer (2009) with rapid weight loss (quarter of his body weight), obsessive exercise and strange eating obsessions developing (e.g chopping fruit into little bits which would take ages). I took him to the doctors in September but it was late October by the doc took my concerns seriously - and even then I had to practically force him to refer him for treatment.
We live in the UK and the treatment offered by our National Health Service is called CAMHS (Child and Adolescent Mental Health Services). The waiting list is HUGE, so we only began (out patient) treatment mid Feb 2010.
Son's extreme behaviour started around November - the manic outbursts, head banging, distorted arguments, freefall into some kind of mental breakdown kind of state, totally isolating himself from his friends, problems at school, obsessive exercise, refusing the eat, the works...
It is now March and we have lived with this escalating nightmare for months now.
The stress and strain on us, as parents, is massive. Yesterday, for example, (the day we ended up with super emotional meltdown as son texted me 20 times from school, mega distressed, with an ultra distressing evening to follow) I reached the end of my coping and found myself picking up a dinner plate then throwing it across the kitchen until it smashed into pieces (fortunately I was alone in the house at the time...) Today I am exhausted and have made the decision to take son out of school for the time being (he just goes to pieces when he's there and spends very little time in lessons, mainly hiding in some corner somewhere). He has important exams in a couple of months (GCSEs), was an A star pupil expected to excel, but, hey, what can you do, recovery comes first...
What frustrates us is that his psychiatrist doesn't think his problem is too severe. His BMI isn't bad (19) and when he's with her, his behavior is quite normal. As a result she's started spacing our appointments further apart; we have a 4 week break between our next two appointments. Despire trying to argue the case with her, she's adament he isn't too bad.
I am sure that every one of you reading this will know what I mean when you feel heartbroken seeing your once beautiful, confident, intelligent, friendly, popular child descend into this wreck of a human being who spots the calorie content on some ciabatta he's supposed to have for tea, becomes a quivvering wreck of sobbing, banging head against the wall as if he's about to break his skull...
But reading through these posts it's so reassuring to see that recovery DOES come.
******
S has slowly put on weight. CAMHS team really don't think he's seriously bad and it makes me mad because I know differently and he's pulling the wool over their eyes... now psych has gone off on her hols for 3 weeks too so we're all at sea... Last time we saw her she was all smiles and congratulations as S reached a 'healthy weight' for the first time. S took that to mean he can maintain his weight now at what, to me, still looks very thin and not at all like the strapping sportsman he once was...
Things felt for a while that they were going well but the last few days, without CAMHS support, they've gone a bit pear-shaped as anorexic thoughts and behaviours creep back...
*****
The trouble is... my S refuses to eat high calorie food (packed with "bad" fats, etc etc) so we end up with loads of bulk and one meal runs into another, fueling the anorexia's control. Does anyone have any suggestions as to how I can wean him off the diet stuff (fat free yogs, ultra low fat spread, etc) and onto high calorie stuff (e.g. normal yogurts, etc - he even has a problem with fat reduced cheese, you see... and of course any cake or pudding with fat in it... despite what the nutritionist says about needing 30 percent of fat in daily diet... he just distorts her advice to suit his own twisted version of nutrition... HELP!!!!!!!)
*****
Last night we had meltdown... total and utter emotional meltdown as S went to complete pieces and became a weeping, distressed, emotional wreck. I guessed it was on its way due to him being very subdued throughout the day. All hell broke loose at dinner...
S said all the improvements we'd noticed in his behaviour and mood were the anorexia and not the real S. It's been lying to us and pretending to be him. (But I don't believe that, because his good mood over the weekend when he met his friends for the first time for weeks, very successfully, was really good...)
Confessed to cheating on portion sizes when he's made his own breakfast or snacks, doing secret exercising, etc. All he thinks about is food, all the time, and inbetween meal times are just times to fill in until the next all-important meal. (Mind you, I knew this... it doesn't come as a surprise.)
Having been off school for 3 weeks (couldn't cope with school, utter emotional breakdown) and remaining off school for the foreseeable future (probably until September), he's getting stir crazy and isolated. I've tried to take him out for nice walks, etc but last night he said he only does these to burn up calories.
I've been aware of the artificial situation of being off school and being so isolated (and bored, despite still studying for GCSE exams); I was waiting for an outburst of some kind. I really don't know what to do or how to handle the situation as he risks isolating himself more and more (though we did have a successfully sociable weekend last weekend). It's an ideal situation for the anorexia to take hold and control him.
Meanwhile we have an age until our next CAMHS meeting. Also he confessed to pulling the wool over CAMHS eyes and pretending to be fine when he obviously wasn't. They've obviously been taken in by this.
On the CAMHS subject... what happens when we go is that he gets whisked off to see the psych who then just drops him off and disappears so, apart from 2 initial consultations, we never get the chance to talk to her. We talk to a nurse, but I get the impression communications aren't brilliant between the nurse and the psych so very little gets passed on.
I really feel "at sea" with all this... desperate for proper, healing care for my son and the feeling I'm not getting it, but don't know how or where to find good care...
*****
I would appreciate some 'stock answers' to certain situations (from your bank of wisdom and experience). Here are just 5 of the many...
1. "Pokey / proddy" situations (as we call them here!) - belly getting flabby, getting double chin, etc etc.
2. "I refuse to eat that full-fat yogurt / milk / cheese" etc plus how do you keep a 16 year old out of the fridge / kitchen in a very small house. (PS Decanting stuff into unlabelled bottles would immediately arouse suspicion.)
3. Flying off the handle at meals resulting in downing knife and fork, rushing out of the room, screaming, shouting and banging head against wall.
4. Situations when the meal isn't "perfect" so he flies off the handle again.
5. Brow-beating into switching snack options, etc - my choice is never the "right one".
Aaaaggghhhh!!!!!
*****
... And I had another meltdown last night with S bashing his fist on the plate so all the food went everywhere followed by 5ft 3 inches me trying to physically restrain all 5ft 11 inches of him from breaking down the door and flying out into the street, me confiscating the house keys and barring the living room doorway... (My husband doesn't get back until late evening as he commutes 100 miles to work and back.)
The strain is taking its toll. This morning, after a particularly bad start, got a call from my husband (on the motorway on his long commute) saying he'd just driven into a large truck at 70 mph and written off his car, lucky to come out of it alive... He'd been so wound up about the situation he wasn't concentrating...
This afternoon we have a brief session at CAMHS for a weigh-in with the nurse. As you know, the psych is on holiday and we don't see her for another fortnight, not having seen her for the previous fortnight (4 weeks without the psych in total... and the nurse will be on hol next week, so we're on our own completely from this evening) All we get when we voice our concerns to the nurse is the infuriating nodding of head sympathetically, you know, that kind of counselling where they just agree with you rather than taking proper action. Basically she has said she has to go with the psych's decision on everything... and at the last count the psych felt fortnightly sessions would be appropriate now rather than weekly (!!!!!!!!) now that he's come just within the 'healthy' weight range.
I can't for the life of me see how an hour's CBT-ish session with the psych every so often will cure S of this terrible thing. I feel as if we're stuck with it forever, not knowing if we're getting the right kind of help or not... I have NO IDEA if we're getting the help we need or need or not, really I don't, and there doesn't seem to be any way I can gauge whether or not we are...
*****
I find it hard (impossible) to understand how the change from the iron grip of anorexia and the depression / distorted thinking / behaviour that goes with it... to normal eating / thinking / behaviour... takes place.
How does the thinking get changed? Especially if the CAMHS / psych support / therapy is ineffective.
(Visions of this being like those anorexics that suffer for YEARS, well into their 20s and beyond...)
*****
I love coming back to this website after a few hours away and finding some lovely, reassuring advice to read through; it's so kind of you to share your experiences with me.
The latest situation is that we had a weigh-in yesterday and S had put on 0.3kg (11 ounces) which the nurse rightly said was really neither here nor there i.e. really just maintaining weight. But of course S thinks he's put on a serious amount of weight and is therefore fighting the daily calorie total because he feels he should be cutting down, not staying with the same calories. He wrongly thinks he has achieved his target weight (although it's unclear exactly what CAMHS think this should be...). He is now just scraping into the "safe BMI" range, although he still looks very thin. But ED is there, stronger than ever, of course, as S is convinced he's ballooning out into a huge fat flabby monster, pinching the skin on his abs to "prove" it.
All those good intentions yesterday promised and agreed when we were shaken up by the fact my stressed out H could have been killed in the road accident, seem to have evaporated. Exactly the same as in February when we thought he'd had a wakeup call when he was on the cardio machine in hospital for 24 hrs after the abnormally low heartrate scare... It's as if it's never happened... ED is like a magician that makes these "wakeup call" situations disappear in a puff of smoke.
2 weeks to go until we see the nutritionist and psych again...
Oh, and H has just found he's going to have to work away during the week (250 miles away) soon so it'll just be me, S and ED battling away on our own Monday to Friday and I feel so stressed out and panic-striken at the prospect I don't know what to do. The only local support I have is my sister and my 83 year old mum (who I don't want to stress out).
*****
Meanwhile S is trying to study for his GCSEs at home (we gave up school a few weeks ago and now pick up homework every Monday, and he will be sitting his exams in private in June). Goodness knows whether he'll make the 6th form or not in September...
Me, I work from home, but it's really just ticking over as I can't do any more. I am spending a fortune on food shopping like you do with this illness (funny that, isn't it, considering...) But am spending zero on clothes, hair cuts, etc - so that has to be good... except I look a total mess and have aged a tonne over the last year but who cares as we never really go out anywhere nice with this thing...
Me and S have our little chats which seem to go so well, but then the ED demon comes back and ruins it all...
If nothing else, I will be an expert on ED by the end of this and hopefully a better, stronger person, mentally as well as physically with all that restraining I have to do when he kicks off...
Refeeding: calories or portion sizes?
March 24, 2010
Our dietitian (who we see ever 3 weeks) is anti-calories and prefers portion sizes, showing us vague pictures of portions of rice on a plate (for example).
But we're finding the only way to get the required food into our 16 year old son is to count calories. It's worked over the past few weeks and his weight has increased gradually. Plus he feels more in control with calories - i.e. he isn't so worried he may suddenly 'balloon out'. But I am aware that calorie counting can fuel control issues... On the other hand, when we tried portion sizes, he ended up losing weight.
*****
A question I've posted on my other thread which you may be able to help with is this:
S refuses to eat high calorie food (packed with "bad" fats, etc etc) so we end up with loads of bulk and one meal runs into another, fueling the anorexia's control. Does anyone have any suggestions as to how I can wean him off the diet stuff (fat free yogs, ultra low fat spread, etc) and onto high calorie stuff (e.g. normal yogurts, etc - he even has a problem with fat reduced cheese, you see... and of course any cake or pudding with fat in it... despite what the nutritionist says about needing 30 percent of fat in daily diet... he just distorts her advice to suit his own twisted version of nutrition... HELP!!!!!!!)
*****
He freaks out at large portions. Also anything with fat in it which means the only way I can get the calories into him is to have loads of carbs, then he accuses me of not giving him a balanced meal (he quotes the nutritionist so suddenly I'm the bad guy who he can't trust and this is all about trust, etc etc etc...)
Anyway, this afternoon's weekly appointment with the weighing scales will be the telling time, hey...
*****
The trouble is... I can't force feed him these things and he refuses to eat them. He won't open his mouth. And then he goes off into one of his out of control screaming / head banging sessions. Keeping him seated at the table doesn't work because he just escapes or smashes his fist down onto the food, mushing it up so it's inedible (and then escapes).
In our small house, keeping him away from the fridge is impossible and in the fridge are products covered with nutritional labelling. If I remove the labelling or try to cover it up, he knows I'm hiding fats I don't want him to see.
Occasionally I can sneak things like butter into the mashed potato, but his taste buds have become SO fine-tuned into noticing when it tastes different, he immediately knows when I've added stuff.
Our latest battle is to try to get him to eat Low Fat Yoghurts (115 cals per pot) as opposed to Zero Fat Yoghurts (75 cals per pot). I anticipate BIG FIGHTS about that...
I have NO IDEA how I can get him to eat higher fat things without literally force-feeding him which is impossible when he's nearly 6ft tall and pretty strong, and I'm only small. Help!!!!
I can tell him that there is evidence to suggest fats help with depression, etc until I'm blue in the face but I might as well be speaking Chinese... ESPECIALLY as his weight has just slipped through into the "safe" BMI range WITHOUT the need for these "extra fats" (as he says...) so giving him fats now at this stage, he insists, will make him balloon out into a monster... He feels they are totally unnecessary.
Aaaaagggghhhhh!!!!
*****
The toys were thrown out of the pram again at lunchtime when faced with a beef sandwich, "dripping" with fat followed by a seemingly endless and pointless argument with my response consistently along the lines of "I am not arguing, this is the way it is and that's final" etc etc etc etc... then threats of what he will do when he's next weighed and has ballooned out into a ten tonne monster, all my fault and all thanks to my extreme diet plan which, apparently, would horrify the dietitian and he's going to make sure she knows I'm mistreating him / fattening him up so much.... "Fine, OK, do that, see if I care" say I, etc etc etc...
Anyway fortunately it all ended with him coming down stairs afterwards and sitting quietly next to me, head on my shoulder.
Me, exhausted...
*****
... HE ATE THE DREADED 'STANDARD' YOGURT THIS MORNING with brekky which he would never (x100000) have ever (x100000) done even just a week or so ago... (and - oops - careless me accidentally binned the remaining fat-free yogurt which I found lurking at the back of the fridge so all that's left are the standard yogs...)
... and he had a (albeit it 'skinny') latte at the shopping mall yesterday...
... and he actually came back from the shop yesterday with a Cadbury's cream egg which he plans to eat on Sunday. Will he - or won't he? Watch this space, ladies...
*****
The good news is that he ate the Creme Egg.
The bad news is that on Day 2 of the Standard Yogs I caught him trying to bin half a pot (I intercepted it and made him eat it) so on Day 3 when it was H's turn to monitor breakfast I told him to be vigilent... which he wasn't... until he looked in the bin and found a piece of kitchen paper containing most of the yog which should have been eaten with the cereal... So we are being super vigilent now, like prison warders (which is what I am normally but H hasn't been so strict; now he knows why he needs to be...)
Today Standard Yog was eaten OK...
Next weekend's "baddie" to be introduced to the diet plan will be a cake containing butter / marg (S always liked to bake fat-free cakes... no surprises there...)
Had to laugh today when we went to church and S started to wonder how many calories were in the communion bread and wine..... I hope he wasn't being serious...
Nearly at target weight but mindset is way off... what now?
March 29, 2010
My S has sneaked through into the "healthy BMI" range and for the first time for MONTHS actually looks pretty normal (if still quite thin). (Thankfully he never got lower than 16 BMI at any one point on this horrible journey...)
The trouble is... his mindset is way, way off "healthy" as you'll see from my other posts... which means we're faced with a new "demon" as all the previous "you must eat to put on weight" stuff becomes obsolete and he panics that he's about to spiral out of control and become a complete blob.
It also makes it masses harder to make him eat anything with fat in it. ("I've put on weight WITHOUT eating fats so why should I eat fats now?" blah blah blah)
It also means we have more "poky / proddy" and looking in mirror sessions than ever as he develops "rolls of fat" on his belly almost by the minute not to mention umpteen "double chins" etc etc etc as he becomes convinced we are dead set on transforming him into Michelin Man like some kind of warped child abuse...
I'd appreciate advice on how to cope with this "eggshells" stage in ED when the body is reasonably OK but the mindset hasn't really moved on at all...
*****
Already the dietitian at CAMHS has become the "goodie" and mum's enemy because "she says I've reached my ideal weight"... unfortunately the psych, too ("Congratulations!" says the psych, all smiles, "Your weight is healthy again!") How can mum's instinct be right when "the professionals" imply he's virtually there... hey...
Every pound gained results in mum's life being made hell on the drive back home. But to our dietitian's credit, she did talk about the w/r where your weight kind of settles. I don't believe we are there yet, but she obviously thinks we're much closer than I do. Conflict isn't good - and S is sure to take her side, not mine.
ED fights back...
April 11, 2010
So there were, coming along swimmingly (as you'll see from my other threads) when - pow! - ED decides to fight back in a bid to get control of S 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 psych on Friday (who was brilliant, actually...) S has started to rebell, refusing to stick to the eating plan any longer, body checking, refusing to eat any fats of any sort, constantly arguing with us (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 psych 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 ED tries to get control again and drag S 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!!!!!!!!
*****
Unfortunately we haven't seen the dietitian for over 2 weeks. Psych was concerned about his obsession with fats and his belief that his current levels of sat 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 ED thing forever...
*****
With us it was (and is in many cases) foods with fat in them. S 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 ED is trying to negotiate a halfway house of keeping the fats where they are and not going any higher... Sorry, ED, but I don't negotiate any longer...
With S, 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 ED fighting back. After he refused point blank to eat his breakfast, he eventually ate it (mind you, I had to threaten calling his dad...) And peanut butter is still on the agenda for breakfast tomorrow with a cinnamon and raisin bagel (plus cereal, etc).
*****
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 ED. So yesterday's complete anxiety-free visit was amazing.
Trouble is, I'm now waiting for ED to fight back again because I know he will, the minute ED whispers to S 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 H 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...
*****
The anxious tension waiting for ED 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 S 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 psych or dietitian, S seriously freaks out and rebels afterwards and is depressed for a day or so. Is this normal? Is it GOOD (i.e. S eventually realises that what was said makes sense, which he does) 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...)?
*****
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 S 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 ED by doing this... or it might be harmless. Would welcome your advice from your own experiences...
*****
We went to see the psych this morning and I feel a bit uncomfortable about it... it was a one-on-one session with S so I sat in the waiting room. S came out all smiles, eager to tell me that the psych felt he'd arrived at his WR and it was high time we adults stood back and let him take more control - in fact she wants a family meeting with us because (acc. to S) she feels we are being too strict and should relax our 'hold' more... S 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 S 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 H and me versus S and the CAMHS team... and also I'm scared they'll discharge him too soon...
*****
I do get the feeling the psych 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!!!!
At least we now have the number of a good private therapist should we need him (ie if we decide to fire CAMHS) - someone who's come recommended and who has lots of experience with teenage anorexics.
S 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 teeshirt 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 Wed 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 H and I will remain ultra-vigilent, if not as obviously so as in the recent past to gauge whether what the psych says is true or not.
*****
Yesterday the psych 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, 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].
S gets on very well with her, though, which is important - easier for her to win him over to a non-ED way of behaving.
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 pscyh - think I prefer the CAMHS one to him!!!!
Fats phobia again...
April 21, 2010
We were going along quite well with S eating one or two 'red light' foods with fat in them (but only getting around half the recommended fat intake per day and one third of sat fats) when rebellion set in again.
I feel like a stuck record with the bit about research showing you need fats for sustained recovery and brain repair, etc etc... all we are interested in is your recovery... this is non-negotiable... etc etc etc. Yet is is actively avoiding 'fatty' foods again e.g. the standard low fat yogurts we introduced to replace the fat-free yogurts - and with this comes endless questions as to whether my (kept well out of his sight) calorie total is accurate, etc. "How will we ever move onto portion sizes like the dietitian wants us to?" I ask, "without you losing weight because you'll naturally be eating less?"
How can we let S take control of his own eating, I ask myself privately, without him cheating or cutting back or avoiding stuff? The psych wants to 'tell us off' for not letting him take some control back and is setting up a meeting to talk this through with us.
I wonder whether this backslide into problem behaviours is related to S's decision to go back to school next week (after 2 months away)?
Meanwhile I won't let ED bully us in any way. I am sticking my ground and telling S there is no negotiation over what he eats.
*****
It all ended in meltdown last night which is (thankfully) something we haven't had for a few weeks (used to have it virtually every day). You know... striding out of the room, banging head on front door, slapping head with fists and crying out in animal voice. S says it's his way of getting ED out of his head and getting S back in control, but it's a really distressing way to do it!!!! S is well aware when it's ED that's doing the talking and arguing whereas S knows what's rational and sensible (he says).
We see the dietitian today after a month's absence so it will be interesting to see what she has to say... Not seeing psych until next Friday. S still plans to go back to school on Wed, but it does worry me that we'll snap back to where we were last time he was there (the plate smashing day for me...) Also, it will mess up the eating plan re. morning and afternoon snacks (S says he won't be able to eat / drink them) and goodness only knows what he'll choose for lunch as he doesn't want to do lunchboxes. Trouble is, at his school ALL the kids have school dinners and no-one has lunchboxes so he stands out like a sore thumb and doesn't want to...
Shall I give the above a couple of days to see how it goes? And if the food side of things isn't working, resort back to Plan A we had before which was for S to have supervised break snacks and pack lunches in medical centre? Trouble is, that works against the whole idea of going back to school which is to integrate back into the social scene. Having been away from school for 2 months, he's been pretty isolated and we worry he'll become too almost reclusive...
How do we know when is the 'right time' to go back to school? H thinks it'll be a total disaster...
*****
Well, our meeting with the dietitian today never happened because she'd forgot to put it in her diary... so by the time we see her next week it will be FIVE WEEKS since we last saw her (because she was ill last time and before that it was Easter)...!!!! I don't know why we bother... I know as much about nutrition as she does, I could do the dietitian bit!!!
Anyway back to school... Much of it is me being nervous about flipping back to how it was on plate-smashing day (see pic below) and the weeks that preceded that... the weeks when I'd get deluged with distressing texts from S lurking in the toilets or hiding in the corner of the common room... interspersed with phone calls from medical asking me to pick him up.
The good news in a way is that the first day back is the only full day back that week (Wed). Thurs we're seeing the dietitian pm and Fri seeing the psych pm. So, if necessary, on both occasions I could pick up BEFORE lunch.
En route to our non-appointment today we picked up a couple of large paninis from the deli. S chose beef and mustard (still averse to cheese...) and ate it all without batting an eyelid. After the non-appointment we went for a walk in the countryside and had one of our long chats - always a good place to talk to the real S without ED rearing his ugly head, though he did appear briefly in a discussion about biscuits: I said I'd know S was recovered (and I could relax more on meals and meal plans) when he didn't insist on McVities (which has less sat fats than supermarket brands) - S (aka ED) started to quote all the sat fats involved and how he'd (apparently) only need 3 supermarket digestives to zoom off the sat fats scale into the danger zone... So I changed the subject.
Re pastoral support at school... We have the medical centre and 2 very supportive school nurses, one of whom is positively saintly and who I want to give a great bit bear hug to, she's been so brilliant. Trouble is, she's not there every day. The head of year is very supportive and understanding. So is the Headmaster (but not really the ideal pastoral support!!!) School dinners comprise the standard stodgy stuff (hot something or other with cakey pud with custard) and a salad bar / jacket spuds / beans / fruit / yogurts, that kind of thing. S will go for the latter...
I was really hoping for some advice on all this from our dietitian today... Mind you, next week isn't so bad and at least we'll have one school dinners experience to do a debrief on...
*****
Phew... have we been through the mill since Monday! It was obviously too soon for S to start school but he had no choice with a 2 day GCSE art exam...
All weekend he was getting more and more anxious and anorexic behaviour started to surface as he tried to avoid food, body checked, was seriously depressed, etc... we had a massive meltdown on Sunday, big-style which ended up with me taking some time out to rush round to my sister's for some tlc while H coped with S...
On Monday morning S was in pieces as we drove to school and took ages before he summoned up the courage to run across the car park into the art block. To cut a long and harrowing story short, his mood was rock bottom by the end of the day. OK he'd managed to brave the school dining hall and had (apparently) eaten some lunch and his morning snack, but he'd been secretly doing pressups during his exam (which he was sitting separately from the others)... and the social aspect at lunch and break was a disaster. Basically he was trying to remain invisible. Today we had the same nightmarish start with loads of body checking ('rolls of fat'), pulling out of his hair in frustration at how 'fat' and 'ugly' he looked, followed by a stressful drive to school followed by the car-park-to-art-block problem again... However his mood was better when I picked up up at 4pm (phew!), though he confessed to doing the secret pressups again... (At least he's telling us about all this...)
Socially things were slightly better, but it's all so very fragile and the 'better' was mainly because one of the girls gave him a friendly hug.
Not sure if he'll be back at school again until the main GCSE exams which he will be sitting separately from the others. I've left it open, trying not to pressurise him in any way. Same goes for whether or not he goes back in Sept for the 6th form, or if he goes to another school, or takes a year out to completely recover or whatever. Who knows, we'll all just play it by ear and set up several options depending on how things are in early Sept...
But it's distressing that certain anorexic behaviours and thoughts that we thought had gone were actually simply dormant and reared their ugly head again in such a vivid way...
And such a shame that he'll miss all the end of year parties that you get at the end of the 5th form, even a formal dinner hosted by the Headmaster. This evil illness has robbed him of all this kind of stuff... the things you would normally look back on with nostalgia as an adult, remembering your school days... Before ED arrived and messed things up, S was having such a good time at school, too...
It makes you wonder if we'll ever be free of this horrible illness...
*****
What WAS good yesterday after school was this... Back in the Bad Old Days, I'd feel devastated when my skeletal son made his way towards my car in the school car park. Boy, did he stand out amongst all those 'normal' boys with his Belsen-like body, dark rimmed eyes, stooped figure and yellowing skin.
But yesterday, 2 months on since he was last in school, I noticed the change IMMEDIATELY. The boy making his way to my car didn't actually look much different from the other boys. He looked... well... almost NORMAL.
Anyway... tomorrow we have the dietitian's appointment (after FIVE WEEKS of not seeing her due to her cancellations, etc), so weigh-in time again... And S had some routine blood tests taken today to check everything is OK.
And, as I may have said earlier, I'm taking myself off to the seaside for the w/e ON MY OWN (and I don't care if it rains).
He he he he, this weekend ED will have my 'no-nonsense' mother-in-law to contend with as S and H drive down to London to see her. ED won't stand a chance with her lasagnes, curries, fish'n'chips and casseroles with her standing over him, arms folded, until he eats up every scrap...
Funny how she and I used to be at loggerheads with each other over child rearing issues (and virtually everything else), but she's totally committed to helping S beat this horrible condition (after all, she's the one that first urged me to take him to the GP).
*****
I am really pleased with the way our meeting with the dietitian went today. She was spot on and to coin a horrible phrase, absolutely 'singing from the same hymn sheet' as me. I kept saying: "So what you are saying is... blah blah..." to reinforce the message to S - and I believe it went in.
Trouble is, S has grown in height and hasn't increased in weight, as today's weigh-in showed, which has brought his bmi back down to 19.5. So we are doing a 2 week 'test' where we increase the calories by 200 a day (even though she prefers portion sizes, she is happy to do calories for the time being because it's the only way S feels in control in what is a very out-of-control time for him) and we are also to increase some fats. Wisely, she called it a 'test' so as not to freak him out too much as he was having a real problem adjusting to the idea of losing his beloved skimmed milk...
She explained all the reasons why boys need fats: to increase testosterone and muscle (which I kept reinforcing, knowing that he's keen to increase both and that this info might just be the motivator he needs...)
Crucially, she also said she felt S needs to be given the 'tools' to handle whatever it is that caused the ED in the first place, to make it easier for him to embrace the food change (otherwise you're just plastering over the cracks, etc etc) - and she'd have a word with the psych about that. I hope she does!!!
Anyway, here comes the rain as I swan off to the seaside.
*****
Well here I am at the seaside and I don't beleeeeeeve it, I've got a tummy bug!! So I'm sitting in bed looking at the (rainy) sea view and worrying about S and ed...
Been on the phone to H who's looking after S this weekend at his mum's house and he's having major problems. Most of the time it's me that does the eating side of things, so H is having probs even getting S to eat 1500 calories or so, let alone the 2700 we're supposed to be on at the moment. And S is refusing to eat, especially fats which the dietitian says is mega important for him right now...
So I'm busy planning my onslaught for when we all get back home. What I really need are 'sneaky' ways I can add circa 200 calories of pure fat to S's diet (which is quite carbs-heavy at the moment due to his refusal to eat fat).
I've already been given quite a few fat suggestions by you all on this website, but trouble is they're mainly things S would spot a mile off with his keen eye for anything that's had fat added... If he's refusing point blank to eat the extra fat he's been told he must have, how do I get it into him? Force-feeding a 16 year old boy who's taller than me isn't easy. I can't hold him down...
*****
H had a nightmarish weekend with S at his parents' house. H isn't used to 'managing' this at all and quoted me some pretty hair-raising situations in restaurants, pubs, etc which involved meal swapping, tears, tantrums, refusing to eat and generally wasting a lot of money, energy and emotion. The result was S came back noticeably thinner and H noticeably older. But meanwhile I spent the weekend drawing up a new eating plan based on our meeting with the dietitian last week - higher calories and introducing fats to very near Government max levels without increasing the carbs (as they were pretty high). In other words, a reasonably balanced diet.
And I've stuck to it like glue, throwing scientific facts at S whenever he resists plus a great deal of love, etc - very 'dophinesque', really...
But, boy, has it taken a lot of time, energy, etc - I'm exhausted - especially counting fats now as well as calories in the background on my beloved spreadsheet (what would I do without Excel, hey...). AND I've got him to eat NUTELLA, full-fat FLORA spread, (almost) SEMI-SKIMMED MILK (i.e. Sainsburys orange milk as a half-way house... no more skimmed...), ICE CREAM (wow!!!) and FLAPJACKS WITH FAT IN... with me being totally open and honest about these rather than hiding them. Facing his fears head on and all that...(Not showing him any calorie or fat counting of course - that's just between me and my spreadsheet...)
I think this may just work. The glitch will be, of course, when he tries school again (which he is hoping to do next week) and the dreaded (lack of) snacks and school dinners come into play... (he wants to try some school before the GCSE exam study break and there are only 2 weeks to go...)
Of course I can't go on counting like this for ever, but hopefully this will get him used to the fact that, yes, he CAN eat all these dreaded things and STILL be within government fats / sat fats guidelines. i.e no danger of suddenly ballooning out into the obese...
I feel like some kind of bulldozer muscling in and taking over, putting right the mess that happened over the weekend and the fact that his BMI had slipped below 20 anyway. Totally 'magic plate'...
In 30 mins we go to the GP for blood test results and a physical examination. Interested to see what he says.
*****
Re. school... the big problem is we live too far away for me to go in and supervise. S refuses point blank to have a pack lunch and, in the few times he did when he was in school before, the nurse wasn't always around to supervise or make sure he DID actually go to medical to have his lunch and not go AWOL... I know for a fact that if he does school dinners he will have the same old stuff (salad, jacket potato and maybe a couple of tablespoons of baked beans followed by fruit salad...)
S also refuses point blank to move to semi-skimmed milk. We will eventually get there, but I may need to filter it in unseen for a while to prove that it won't send him off the scale... When we saw the dietitian last week, he broke down in tears at the dreadful prospect of semi-skimmed so she and I decided to compromise with orange top 1 per cent... That's how bad his fear of fats is...
The good news is that for the past 3 days he's followed the new diet plan successfully but it's so artificial (all the adding up of calories and fats) that we can't possibly go on like this forever. For me, it's to check he's getting ENOUGH calories and fats. For him, it's to check that he's not getting too many!!!
PS he had the GP checkup this morning which was a total waste of time as the GP didn't seem remotely interested in his condition. But the blood tests came back OK, if a bit low on iron. I could have strangled the GP (the original GP is away on extended leave).
*****
It's difficult about school because he's at that critical stage i.e. GCSE and hates the idea of maybe taking a year out and joining the 6th form one year on (i.e. being with a younger year group) or having to join a 6th form college. The 'carrot' is his current 6th form in September and for him to return we must be pretty darn confident that it will work or he won't go, mainly because, being a fee paying school, I can't afford to pay a term's fees only to find he can't face school. And the local state 6th forms are full, so they aren't an option, either.
He has been taking work home and getting study notes from teachers, but it's not the same as actually being in lessons so we'll just have to see how the exams go. He's sitting them separately from his peers to reduce the pressure.
So far this week has been successful re. calories and fats - but I'm exhausted and stressed, and starting to show physical symptoms of stress / anxiety (e.g. IBS, rashes, etc) - am seeing a therapist in a week's time... Funny how all this costs you a fortune in food, too! I've had to cut down my work to just a few hours a week (self-employed) which means my income is pretty minimal, meaning there's the stress of that as well...
Today we see the psych for a 'family meeting'. I just know she's going to 'tell us off' as parents - bit of triangulation going on here (as someone else described on a different thread) with ED having won her over to his side i.e. she thinks she is talking to S but it's really ED speaking... (which S has admitted to us...)
I had a horrible nightmare last night. We got a new psych of the 'old school' variety, really scary and strict, telling me off and shouting at me that I should be feeding S far more than I am, especially fats. I ended up screaming at her: "How the heck do you expect me to get the food into him when he refuses to eat it?" and S was carted off by 'the men in white coats' to a prison-like inpatient unit with this terrible woman in charge while I tried desperately to give him a hug to show I love him... Aaaggghhh I woke up in a terrible sweat...!!!
Rebellion, actively cutting down
May 10, 2010
So there we were, going along nicely on the higher calorie diet (2700 cals) with higher fats and S seemed to be adjusting to it well (give or take a few minor arguments). Until today...
... when he's suddenly "not hungry". Refused to eat an egg with his lunch ("too hard boiled"), refused to eat date & walnut cake 'pudding' ("too dry") and refused to eat ice cream as a substitute for the cake ("just not hungry"). When I insisted he ate something and calmly explained the reasons why he needs to (again...), he blew up and shouted "OK if you want me to eat ice cream, then I'll eat the whole f***ing tub", preceded to attempt to do so then promptly threw up over the kitchen floor. (I made him clean it up...)
Don't know if this is just a blip or if he is really genuinely "not hungry" or if it's ED talking, knowing he's about to be back at school for exams (funny how he started to cut back on food before his other exams 2 weeks ago...). And now I'm stuck with this food he won't eat (cake and ice cream) - but I can't force-feed him...
Help!!!!
*****
How do you feel about forfeits/punishments - of the "You will stick to the eating plan exactly as I put it in front of you or you won't do blah blah blah..." variety?
Just wondering if this works or is a waste of time - and not very caring or compassionate of me, really. But I feel mad when I lose a battle against Ed like I've done today.
Several of you have mentioned high calorie shakes, but I'd love advice on how to get them into my son as he's very vigilant about his shakes - he always makes them so if I were suddenly to present him with a shake, he'd be suspicious... If only...
We're back to the fats phobia which makes it really hard to get sufficient calories in S without adding loads of bulk. The moment I introduce something higher in fat (e.g. the date & walnut cake), he refuses to eat it. He was OK with ice cream, etc for a while, but is now rebelling...
*****
My son is the king of switching meals / snacks at the 11th hour although I never let him change the evening meal - and always check he's not 'downsizing' on calories or fats.
Today, when he calmed down, we negotiated a 'rescue plan' to bring the calories back up again - and he walked in here a while ago with a bag of sweets he was munching (although he's had the bag for AGES, he hasn't really eaten any of them. Maybe it's his way of saying sorry for the havoc Ed caused at lunchtime, hey...)
PS That date and walnut cake isn't at all dry, in fact it's delicious and I scoffed it up myself. Have frozen the rest for a time when Ed isn't as strong... or to put into one of my super duper trifles. Meanwhile I feel another of Ma Dolphin's calorie laden rice puddings coming on...
*****
Unfortunately, as ever, having studied those recipes it seems that most have ingredients my son wouldn't entertain in a zillion years. I could introduce them sneakily, but (a) that's not recommended, really, and (b) he would immediately know they were there by taste, texture, etc. For example I couldn't simply hand him a high cal milkshake and say "Drink".
Meanwhile he still refuses to eat stuff, having had 5 very successful days on the higher calorie / fat diet plan given by the dietitian. Now he is refusing to budge and, as you will see from my other thread, the only way he'll agree to eat (some things) is to take back some of the food preparation control himself. I said if he loses weight, then I immediately take back control and I imagine the calories will need to increase to make up for lost weight. I feel helpless and feel there's nothing else I can do without clamping his mouth open and force-feeding him.
*****
Yesterday was his first day back at school since Feb (apart from the 2 art exams) and it was successful. Today we had our most normal school run in MONTHS! No visible anxiety at all and no hesitation getting out of the car at school, even though he was early. And he's already planning camping with the boys this weekend and says he's going to the school prom and party afterwards. This from the boy that couldn't even talk to his friends just a few months ago, let alone entertain the idea of school.
But I know it's all very fragile and could shatter with just one 'wrong' comment or look from a peer...
Apparently I've got an ED...
May 12, 2010
Does this sound familiar to anyone? We had a long, exhausting and pointless argument at dinner yesterday about why I am showing classic signs of anorexia, according to my son. He ended up in floods of tears saying how worried he was about me and nothing I could say would persuade him that I am totally normal.
I am small (5ft 3in), am over 50, on HRT and as a result with a metabolism that's pretty low, so no way can I eat the quantities of food that my son has to eat - or I'd become huge. So I have smaller portions and small lunches, etc and sometimes leave food on my plate. Yet he sees my behaviour as ED-related...
Bit of a new development, this. Anyone else experienced it? I have visions of having to eat huge amounts just to keep S happy...
Pear-shaped and very, very messy
May 16, 2010
Last week, if you remember after 6 very successful days sticking to the higher cal / fats eating plan, S refused to eat the meals and snacks I put in front of him. The only way I could get him to eat was to allow him to take back some control over his intake and strike a deal that if he LOSES weight by his weigh-in next week, then I take back total control. The psych has been 100% behind S's desire to take back some of the control whereas I've been 100% sure S isn't ready to do so. Triangulation, with me as the 'baddy'.
Anyway, we saw psych on Fri followed by the nutritionist (sep meeting i.e. pscyh and nutritionist aren't together). Psych is still behind S's desire to take control despite the fact he had LOST 0.7 of a kg on Friday (which must have happened during the 'pear shaped' days when S was refusing to do the eating plan). Meanwhile nutritionist is completely on my side, unhappy about S taking this control and reinforcing why this diet plan was prescribed and needs to be followed. Reluctantly however after S's protests, she agreed that S could continue with the 'deal' with the caveat that if he hasn't put back the lost weight by Friday's weigh-in, then I take back control and the strict eating plan kicks in with a vengeance.
It all started well, with S mirroring the eating plan on Friday. But then on Sat he went on his camping trip with his friends - great from a social point of view, but terrible from a food point of view. When he got back, he was just like any other boy who'd had a fun weekend with his mates which was good... initially... but then things quickly spiralled out of control as he started to tot up his calorie intake, checking calories on the Web, etc - and he went into total panic, convinced he'd been 'bingeing', disgusted at himself and generally beating himself up about this so-called 'binge' and refusing to eat any more food today, also refusing to let me take back control and reinstate the eating plan which all my instincts scream that I should be doing. I can't clamp his mouth open and force-feed him - and Ed just spits back at me that I can't go against what the psych has instructed. So what can I do?
Things have gone totally pearshaped and very, very messy. It's not come as a surprise and I'm mad at the way the treatment team have been handling this with, on one hand, the pscyh telling S that yes it's great he's taking more control and, on the other, the nutritionist insisting he isn't ready (which I agree with). Plus, because of this, S is getting some pretty dreadful mixed messages. So much for 'all singing from the same hymn sheet'...
We have a weigh-in with the nurse this week, but we don't have a pscyh or nutritionist appointment for another fortnight. And if S hasn't put on the lost weight, then who's to say he WILL stick to his side of the 'deal' and allow me to reinstate the eating plan. Help!!!
*****
Until the weigh-in on Friday (which I am hoping to move to Thursday) when S knows that if he hasn't put on the lost weight I take back 100% control... I am trying to control it in the guise of S doing it but I'm there in the background 'strongly recommending' he has x, y and z... sounds odd, but I think for just 3 days it will have to do. Already S is trying to negotiate for more time, but I said a Big Firm NO and blamed it on the nutritionist ("I can't go against medical advice... it's as if you had cancer, were prescribed chemo and hated it, asking me to stop it... I'd have to say no, because it's been prescribed for you and I'd be negligent, etc etc to do that" blah blah stuff along similar lines...)
I said at some point in the hopefully near future, he'd be given another chance to take control back... when he's ready... and so on...
I had to go and pick him up at lunchtime at school today after an end of 5th form English lesson celebration which went pear-shaped when cakes were brought out... S couldn't handle it and freaked out... but things had been heading downwards since he got up this morning. I tried to prevent him going to school, but he insisted. And he is adamant he will try school again tomorrow. Thankfully just 2 days of school to go before exam leave.
Meanwhile he's trying to mirror the diet plan again, which I guess is better than refusing to eat... roll on Thursday's weigh-in...
*****
For the first time I'm actually hoping he's LOST weight giving me the ammo to take back 100% control.
Meanwhile he's getting super-stressed about the end of 5th form day tomorrow with Big Lunch with 5th form and Headmaster followed by talent competition. You could say I should keep him away but he's insisting he goes. He won the talent comp last year, but I'm really worried that this year he will flip and something horrible will happen as his ED-led desire for perfection kicks in. But he insists on going...
I shall be SO GLAD when tomorrow is over, followed by the weigh-in on Thurs when things can return to "normal" with any luck and I can concentrate on kicking ED out of our lives.
As S is sitting his GCSEs separately from his peers, hopefully that shouldn't create too much extra stress (other than the usual, normal GCSE stress...)
I'm reluctant to change psychs - how do I know it won't be a case of 'out of the frying pan...'? Plus S has built up a good rapport with her which he'd need to build up again. Plus, it sends out the message to S that we don't believe the psych is doing it right after all (so who's to say that any psych is right)...
For all I know she may be doing a wonderful job, in a low key 'softly softly' sort of way... after all, S has definitely improved over the past 3 months... and, as the school nurse says, at least S is talking to her (as opposed to sitting there with his mouth clamped shut). It's really hard to know what to do... I think I'll give it a little longer and see how things go. If alarm bells start ringing very loud, then I'll have a re-think.
*****
Yes, the staff at school have been brilliant. Meanwhile S is wound up like a coil at the moment, biting my head off at the slightest food/eating plan-related question, even when put as subtly as possible!
*****
S got weighed today, as planned, and had put on 0.1kg (remember he lost 0.7kg last week and a little the week before). Before I could say anything the nursing assistant rushed in with "Well I think he can continue monitoring his own food intake for another week". So that's what I had to do, couldn't argue the case in front of S - we must appear to be singing from same hymn sheet and all that...
It worries me alot that if he put on 0.1kg this week and continues to eat how he is eating it will take him SEVEN WEEKS to get back to where he was before the 0.7kg weight loss!!!!!!!
*****
I've had a very stressful week. S continues with his version of the eating plan and screams at me if I make so much as a whimper about what he's eating. Meanwhile I am sure he isn't eating enough (to put it mildly...) (He is trying quite hard, but he really isn't eating enough, but I guess Friday's weigh-in will be the telling time.)
I've had massive arguments with my husband who keeps accusing me of "Going against all the professional advice" [which is to let S get on with things his own way] over and over again while S accuses me of behaving like I am because I can't handle losing control of the eating.
Meanwhile I can't get hold of the CAMHS team or the nutritionist, having emailed, phoned, arranged for the nurse to leave messages in pigeon holes, etc. No-one is getting back to me [so I can arrange a meeting without S present and also move our nutritionist appointment forward from next week to this].
And I know on Fri when we see the psych she will whisk S off to be weighed followed by a session between her and him while H and I see the nurse (who never seems to pass our concerns on to the psych, or at least it never seems that way). By the time we see them at the end of the session, she'll have said something like: "He's lost a little weight, but I feel he's doing SO WELL we'll let him carry on as he is... I've told him to try a little harder to eat more..." sort of stuff.
I feel as if it's just me, surrounded by S, H and a CAMHS team that all want to do it very differently than my gut instincts shout out and I am very, very depressed about it all. (So much so I had to rush out of church on Sunday in tears because, for some reason, it just got to me... it was SO EMBARRASSING with everyone staring at me... followed by a day of feeling terrible, with H continuing to criticise my handling of this. I'm almost wondering if they're right and I'm just potty or a control freak. I feel totally helpless!)
*****
Tomorrow is the weekly weigh-in and S's psych session. H and I plan to grab the psych before she disappears in a puff of smoke to set up a private meeting between us and her, without S, to see what her gameplan is - and to suggest that extra CBT help for the severe anxiety might be useful (even if we have to bring that in privately).
If we aren't happy with the results, then we'll take it from there. Difficult to switch teams because you never know if they're going to be better - or worse! Difficult to get GP on our side as she's on long term leave and we have several GPs, but I'm going to ask the receptionist if any specialise in eating disorders and if they do, to see them and talk.
All credit to him, S has been trying very hard to eat within the eating plan and things are leaps and bounds ahead of what he used to be like - massively different. But tomorrow's weigh-in will tell if it's working or not. If he's lost or just maintained, then I need to take control. If psych zaps in first with a "carry on as you are and just try to eat a little more" type of thing, then S has agreed with me that I can monitor his intake from a calorific point of view to check he's getting sufficient calories. He agrees that he needs at least 2700 to move forward and is happy to stick to this. So hopefully whatever happens tomorrow I will feel more confident that at least some element of control has been regained.
But, importantly, H and me need to talk to the psych separately at some point very soon to see what her plans are - from eating through to the confidence, anxiety, etc issues.
When I look back over the past few months I can see massive changes for the better, despite the setbacks that send my stress levels stratospheric, so that has to be a Good Thing. And they've all taken place since we started therapy, not before. So psych and her team must be doing some good.
But the biggest issue really is addressing the severe social anxiety problems. S is fine when he's not in school, but the moment he goes back then - zap, pow! - he's off the rails again. So we're strongly going to suggest introducing a third party therapist, suggesting s/he 'complements' what the psych is doing.
*****
At Friday's weigh-in, S had PUT ON 0.6 of a kg so he's now put back all the weight he lost - and this has been under his own steam. So we are trying for another week to see what happens, but this Thursday we'll be seeing the nutritionist and the key issues for me are his fear of certain fatty foods (including semi skimmed milk) (and cheese - at the weekend he deliberately asked for a meal WITHOUT CHEESE in the pub) and fear of generally overdoing it and ballooning out.
The (diplomatic) suggestion of external CBT therapy didn't go down well with the psych!!! But S is starting a weekly anxiety group run by CAMHS at their IP facility next week. We are also arranging a meeting between the psych, H and me for next week to take stock of everything.
So that's where we are at the moment...
*****
I should have known better. Took son for a hair cut because his hair had grown out of control over the past few months; thought - in my naive, misguided way - it would be good for him. But his body dismorphia kicked in with a vengeance and he went MENTAL afterwards, effing and blinding, shouting, weeping, walking the streets and generally going OTT because it looked "cr*p". I feel like kicking myself. With GCSEs next week, I should have known better than to interfere. Boy, am I beating myself up about this - and son is out of control...
SHOCK - dietitian axed from our CAMHS team!
June 03, 2010
I can't believe it, I just CAN'T BELIEVE IT, but our local health authority, in its wisdom, has axed the nutritionist from CAMHS teams treating outpatients. Only IPs will receive nutritional advice from a qualified nutritionist. Considering that eating disorders are about... FOOD!!!!!... and distorted ideas about food plus it's all about putting on weight and learning to eat healthily and with a normal, undistorted attitude towards food, nutritionists aren't just essential, they're VITAL. But I don't need to tell you guys this...
It's been suggested I write a letter for our psych to hand to the axeman/woman. Psych has complained, too. We have just one more appointment with the nutritionist before the axe falls.
Considering the INCREASE in EDs over the past decade and the high mortality rate for EDs, this kind of cutting is a disgrace and is putting children's lives at risk. It's not only a DISGRACE, it's CRIMINAL.
PS And this on an evening when S is refusing to eat his tea, any of it, because the onion I'm making into a veg tomato pasta sauce is 'swimming in oil' (1 tablespoon) and yesterday he cut off all the fat off a slice of bacon, leaving just a small bit of meat. This is the boy that our local NHS has decided doesn't need a dietitian any longer.
Me, I'm afraid I'm back to plate smashing because I have a boy who refuses to eat his evening meal, I have nothing else to give him and instinct says I shouldn't give in to ED anyway. And the rug has been pulled from under our feet with the dietitian axe.
Oh, yeh, and H blamed me for yesterday's meltdown where I ended up an emotional wreck. Today = same wreck, so can expect same unhelpful comments no doubt about why I should be more 'upbeat' and 'chirpy' about all this.
*****
Back in my past life when I was normal, I used to write letters to the paper, get on the radio, etc about things that bugged me (and how trivial they all seem now!!!!!)
Obviously this is what I am going to have to do again.
Hey ho...
I have fired off a revised letter to 'the powers that be' today, as a formal complaint. Considering that the dietician only spends one day a week with adolescent ED patients and the majority of those are in-patients (which is continuing), I tend to feel that the remainder of the time she spends with out-patients is pence, really, in terms of fund savings. Axing it seems crazy. But it seems it was only ever going to be a 12 months contract, ending now, unless 'the powers that be' decided it was sufficiently important to make it into a permanent post - which they obvious didn't. But we were NEVER TOLD this was the case so it came as a bombshell.
PS Just googling private dietitian in our area (UK) and can't find a blooming thing... anywhere! Anyone know how I go about finding one specialising in EDs? I thought it would be simple...
*****
More feedback from the psych on the axing. She says this particular CAMHS is the only one in the city with dietetic support anyway, the other teams don't have any at all (like Marcella says above about her local NHS service).
The psych also feels that we've almost reached the end of our need for a dietitian anyway (!). So I said I'd have no choice but to go private as I definitely feel we need dietetic input for some time to come!! But she was very sympathetic and I know her hands are tied.
I've finally heard from (the Head of our city's) CAMHS about whether or not they will be reinstating our dietitian and the answer is that the "Commissioners say no"...
I spent 30 minutes on the phone to her going bonkers - or rather stating my case in black and white with flashing Las Vegas lights.
So it's time to get out my chequebook, dip into my savings and pay for a private dietitian...
I am hopping mad. I feel like committing murder - or worse! I wouldn't wish an ED on my own worst enemy, not even the Commissioners themselves and their children (who, obviously, have never been through the experience we have been through as parents...)
Thank you to everyone that emailed me today...
June 04, 2010
You know what it was about... and I just wanted to say a massive thank you for rallying round with so much support, advice and genuine friendship.
For the first time I feel the psych understands where we are coming from and her session this morning, although tricky to start with considering my son wouldn't even open his mouth, was conducted extremely professionally, sensitively and with results in that he left the premises 90 minutes later upbeat enough to suggest he and I have a picnic in the park, which we did, and it was lovely. Then this afternoon we had an appointment at the IP unit about the Anxiety Focus Group he's going to for 12 weeks from next Friday. That went well, too.
The upshot is that, although still definitely very low, his mood has improved enormously since last night and this morning. Psych has not prescribed any ADs; she offered to do so but he refused so we've decided to revisit that next time we see her which is next Wed, then the week after. So last night's incident has resulted in our fortnightly appointments reverting back to weekly. Plus she explained clearly what we should if something like that should happen again (God forbid...) i.e. who we should contact depending on how serious we judged the situation to be - and what would happen in each instance if we did.
She also got right to the grass roots bottom of the main issues that are worrying my son and came to the conclusion that so far he'd been extremely skillful in pulling the wool over her eyes (which, as you know, is what I said ages ago...). And he admitted that, yes, that is the case.
So although last night was pretty nightmarish to say the least, I feel that some good has come out of it in that it may actually be a watershed in our son's treatment... for the better. I really hope so.
I'll keep you posted on how my son's mood progresses. Me, I have calmed down and I'm quite surprised that I don't feel totally wiped out. Amazed and astonished, actually.
Just to say, I really appreciate what you all did today and I couldn't have done without you. To celebrate, I think I'll buy one of Laura's plates. And, dear Laura, I promise I won't smash it on my kitchen floor!!!!!
Love and masses of grateful hugs, Batty xxxxxxx
*****
I was thinking today that, if it wasn't for ED coming into our lives, so many GOOD things would never have happened. I can't list them all here, and many are very personal, but it has shown me just how genuine, loving, totally selfless and generous people can be - people that don't even know me! Goodness only knows what you must be like with your non 'virtual' friends, you must be amazing!!!!
I have another friend (who lives locally) who I've become very close to, directly as a result of the ED (long story...). She has no connections with EDs, but despite having (not good) secondary cancer, she's been the most amazing and incredible support - the kettle is always on whenever I need shoulder to cry on. All of this makes me feel very humble...
So far things are reasonably OK here apart from the fact S is on his usual 'low'. My BIG HUGE WORRY is that next week which is the first of the 2 GCSE weeks and which is when my husband is working away again, could be potentially very sticky. I hope and pray that all will go smoothly, but I'm going to get some reinforcements lined up in case they don't. (Above friend plus my sister who's also been great support.)
Thanks again, all of you... I hope I can return the favour some time - seems to always be me that is doing the taking and not the giving here.
De da de da de da... ED still going strong...
June 14, 2010
Definitely been 4 days of "several steps backwards" in the Matty household, starting with lunch at the (new) CAMHS Anxiety Group on Friday (2 bites out of a sandwich = his lunch), followed by cutting back all day on Sat because of a huge Indian party in the evening when in fact he ate virtually nothing despite being "encouraged" to do so by our poor hosts who had no idea what was preventing him from tucking in to their incredible food, followed by more cut-backs on Sunday and a MASSIVE OUTBURST of angst and distress followed by more of the same today. I said "Will you promise me something? When you're a man and you're through this and you look back and realise how much you hurt me and your dad, will you come back and say sorry?" Reaction? Bashing around the house, shouting like an animal and swearing - like he used to do in late winter. Oh, and he's continuing to lose weight yet CAMHS still insist he needs to take responsibility for his own food (except evening meals which I do).
Oh, and my 88 year old Dad was rushed into hospital on Friday night extremely ill and is still there, so I'm stressing out on that count too. But ED, of course, as we all know, is incredibly selfish and self-centered and doesn't give a d*mn about the fact I'm heartbroken that my beloved Dad might pass away...
Ah well, that's ED for you...
*****
I weighed S this morning and he's hovering around the same weight. But he and I are working towards INCREASING his intake, with me (hopefully) winning him over to the idea that I need to keep a FIRM EYE on his intake, that he needs to INCREASE his intake and if he loses weight, then it's back to the eating plan with a vengeance - DESPITE what the CAMHS team says ("The psych is a psych, not a dietitian" I tell him). If he doesn't regain weight, I also say, he won't lose these ED thoughts and behaviours and it could also affect whether he returns to school in September (which he is very keen to do).
But I can't help thinking, it's like a Merry-go-Round where I keep coming back to the same point over and over again, but not really getting anywhere at all.
Meanwhile, I will be setting up our first appointment with our private dietitian who, hopefully, will be on my side, me being the client and all that. If not, she goes.
No news on Dad yet - will get his test result this afternoon.
*****
Trouble is, as we all well know, we may be the ideal captains for the ship but will our children listen to us 'mere parents'? If nothing else, the 'professionals' are almost like school teachers in that our children are more likely to listen to them. The trick, of course, is to make sure those professionals say what your gut instincts want them to say.
Actually, if anyone has any TOP TIPS on how to get our teenagers listening to what we say without biting our heads off or refusing point blank to listen, I'd welcome them!!!! Hey ho...
*****
Meanwhile he's been ranting and raving this lunchtime, crashing around, animal shouting, tears, tantrums and threatening to kill himself - all because of a chicken and avocado sandwich followed by tonight's meal which will be pork meatballs with Parmesan cheese, pasta and tomato sauce. I rang CAMHS, but they're all in meetings. I rang his Dad who had a long chat with him on the phone. I said "This time I'm taking full control over your eating... from tomorrow... it's back to the calorie counting", with him then refusing to do so accusing me of "Ruining his life" and refusing point blank to eat ANYTHING. So definitely feeling we're on a Merry-Go-Round, always coming back to the same place - and to think it's almost our first anniversary of ED nudging its way into our lives... Hey ho, time to pop another couple of "Mothers Little Helper" pills (that's for me, he refuses to take medication point blank).
Oh and I used the threat of NO SCHOOL PROM - I can get a refund on that suit (see Facebook pic) as it still has the labels on it. I anticipate a big drive from him to LOSE WEIGHT in time for the prom... already that suit hangs off him...
*****
I am not negotiating with ED - have told son I can return his suit to M&S on the day of the prom if necessary. Ideally I wouldn't send him to the prom but he was so insistent as "everyone in the year is going" etc etc. I've stated that he needs to gain half a kg a week, no negotiation, until we get proper WR which is higher than the "vague" target CAMHS have never set us. This time I am setting it. Another condition if he doesn't play ball is no 6th form in September, instead he'll take the year off and go in a year late with the year below. If he DOES play ball he'll get his Xbox mended at long last plus other bribes. We are still on for the meatballs and he did eat his sandwich in the end after I pretended I was you, CJB, asking myself how you would respond / behave!!!! You wouldn't stand for any nonsense, I am sure - visions of a kind of Boadicea character charging against ED in your chariot, swords a-blazing. And it worked, because he ate the sandwich and I laid down new ground rules, non-negotiation-style, afterwards.
*****
By the way, in an internet of weight loss charts, etc, can anyone recommend a website that accurately tells me the ideal weight for my son's height? Some are telling me he's OK as he is whereas others tell me he is considerably underweight.
Or maybe some of you could help.
He is 5ft 7ins and weighs 59kg (130 pounds) with clothes on at the last weigh-in (calibrated CAMHS scales). In the absence of a target weight from CAMHS, we are setting our own target weight. Have decided on 62-64kg (136-141 pounds) but not sure if this is too low. The last target CAMHS set us was between 59-61kg (130-134 pounds) which, to me, seemed too low.
*****
Meanwhile I'm back from our weekly CAMHS session and son has LOST 0.8kg (and is actually now 57kg, not 59 as I'd thought) so I said to the psych: "My son has consistently lost weight, week on week, and this is supposed to be a weight gain diet not a weight loss diet. How much weight does he have to lose before CAMHS sweep in and do something about it?" to which she said "I'd like him to continue taking control of his own eating; he's doing so well and the general trend is weight increase, so I'm not unduly concerned. If he continues to lose loads of weight, then I might be concerned" to which I said "The only reason there's a trend towards weight increase is because of the weeks I spent controlling the eating plan which is when he gained weight. During the whole period that he's been in control he's only gained weight once. Also, I'd like to aim at a higher target weight of 62-64kg" to which she said "Where did you get that figure from? We're happy with the 59-61kg 'tramlines' the dietitian set" to which I said "This is a figure based on height / weight plans and also because in Sept he plans to take up rugby again and wouldn't be able to do it with his present build; it is also based on how he used to be before anorexia kicked in" to which she produce her own height / weight chart to prove that I was wrong... And all in front of my son who was LOVING the triangulation as she was saying exactly what he wanted to hear and making 'baddie' mum look pretty darn stupid.
No comment.
*****
After a lot of hard thinking this weekend, I've made the decision that this week is the week we drive forward towards our destination rather than pointlessly and endlessly driving round and round the block. I have formulated A Plan which aims at ironing out all those niggly areas where I wasn't doing so well as a parent of an ED child.
The Good News is that son has said the Psych has said this week is his Last Chance to put on some serious weight before the Eating Plan kicks back in - and he knows it. But he has said it won't kick back in as he WILL put on weight. Not convinced... not convinced at all... and in a way hoping he will lose again so the psych supports me this time round and we're all on the same page for a change.
*****
He bites my head off when I try to find out what he's been eating (exact quantities) - like the ED beast screaming at me to back off... But today I decided I needed to keep a tab of EXACTLY what's going into him, calories-wise, and so far it's under 2,000 a day. But he went crazy when I challenged him about it, threatening that it'd seriously jeopardize his work experience because he'd be thinking about it all day (well if it does, it does, hey...)
PS (later) I've laid the cards on the table with S and told him that he has approx 10 weeks to go until school begins and the 6th form. At 0.5kg gain per week, he could get to 62 kg if he starts now.
If, when CAMHS reinstate the eating plan when he's lost yet more weight this Thursday, he fails to stick to 2700 cals per day, putting on this 0.5kg a week, and fails to get to a min of 61kg ("fat" as he calls it) by 1st September he won't go into the 6th form, he will take a year out and join the year below in the 6th form in 2011.
So he said in that case he won't go back to school ever again, at all. He admitted that he simply does not want to put on weight and said CAMHS would accuse me of being the 'baddie' again (i.e. CAMHS is on his side, Big Bad Mum is not).
So I said school or not (and 'not' would mean having to get a job because I'm not supporting him) that WR is not negotiable. The road to WR can either be slow and grueling over many months, going round in circles, just as we are now, with no school and no future... OR he can do it the easy way and stick to the eating plan, as outlined, go into the 6th form (which in reality he longs to do) and go to university to do history (which he also longs to do). But either way the goal is WR whether he likes it or not.
He is not speaking to me now and looking forward to his buddies at CAMHS telling me off. (He says "I'm going to tell Xxxxx about you!", primary school style...)
I am at my wits end. I really don't believe he will go for the eating plan and will continue to lose weight until we're back at Square One... or worse...
Game, set & match to ED last night...
June 23, 2010
I thought it warranted a new thread... CJB 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 H 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 ED at its most "magnificent" and "satanic". Me, on the phone to the emergency doc asking for advice, but S refusing to go to A&E (ER) to see the psych team. H phoned half way through and tried to talk to son to bring him out of his mood, then I took the phone and H started to blame me for these ED moods because apparently everything would be easy going and run smoothly if it wasn't for me "going on about food", so they 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. our psych's 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 S carry on as he is. If he gets bad enough to be admitted as an IP, 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 ED 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 S went to bed in a fake relaxed mood (undercurrent still there...). ED no doubt jubilant at the fact I was surrounded, General Custer Style, enemies around me, all fighting on the ED side.
I am in an impossible situation. Today I'll try again to get hold of the psych but this time to insist that I believe S is at risk and insist she writes me a prescription for ADs. Then I need to persuade S to take them (which will be impossible).
Meanwhile what do I do? This could be threatening our marriage as H blames me for S'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 S that we'd go back to the eating plan if he loses weight again this week. At the end of the evening S 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 the psych, and last night between me and his Dad.
Game, set & match to ED, 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 pscyh knows I don't see eye to eye with her and said as much today when we popped in briefly in a bid to get her to try and get my S to speak when he had shut up shop completely today. He walked out of the session and she 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 as CJB etc know 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 session tomorrow - and no doubt then all hell will break loose as we know ED hates eating plans. Next week I've insisted on a family meeting with a session of just husband, me and the psych to thrash things out.
*****
Meanwhile I know son wasn't water loading or faking yesterday as I took him straight from his work experience and there was a clear hour between me picking him up and the weighing session. Even so, he'd still lost a little bit of weight (how much, I wasn't told...)
As CJB etc already know (and are busy ranting over like I am...), yesterday my psych wasn'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, acc. to the psych 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 son and what isn't".
And, it seems from what she has 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, she said that, for him and his build, a weight gain of 0.5kg 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 she doesn't know what his build is - she never saw him playing No 3 in the school rugby team! As CJB 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, we should take things a bit easier all round... (Get me some false teeth will you...)
There is nothing I can do. If I fire the team, we're stuck with nothing. And I can't complain because on what grounds would I complain?
*****
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 (successful) school prom, looking so thin and pale, even H realised that we're getting nowhere with the psych. However he had a caveat which was that maybe she has some "hidden agenda" as he calls it whereby she concentrates on working on the reasons behind the ED before working on the re-feeding which, hopefully, should come naturally as a result of the reasons behind ED being sorted out. NB I HASTEN TO ADD THAT THIS IS WHAT HE THINKS, NOT ME, as I know it should be completely the other way round!!!!!
Meanwhile S is refusing to speak to me about food AT ALL because of the psych 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 ED 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 the psych 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. Thankfully H is seeing Marcella this week and is now very keen to do so. I am certain we can win him over.
And the Charlie Brown "Wah Wah" idea is excellent - if I can get over the problem of S quoting the psych at me every five minutes.
I am getting good feelings about bringing the private dietitian on board as we can move the food focus to her exclusively and just leave the psych to do psych things (bit about the general mental health is so true - I am convinced she has very little, if any, experience of EDs).
We are insisting on a private meeting this week - half an hour of thrashing it out on Friday.
Also, I will take time to print off everyone's replies above and read them through in detail, looking at all the links you've sent me.
THE THING IS... I SHOULDN'T HAVE TO HAVE THIS BATTLE IN ADDITION TO THE BATTLE I'M HAVING WITH ED... IT'S MAKING IT A ZILLION TIMES HARDER AND I'M REACHING BREAKING POINT!!! Meanwhile I'm heartbreakingly watching my son slide downhill....
I am so mad I could strangle someone!!!!!
July 01, 2010
As you know, our UK NHS dietitian has been withdrawn so we're having to go private - and "the powers that be" refuse point blank to let us keep her, despite her being the strongest member of what might laughably be called a "treatment team".
As you know, our psychiatrist has let our son lose weight consistently over the past 6 weeks after insisting our son take responsibility for his own eating - but said last week that she "isn'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 her 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, thoughtfully provided by our dietitian at our final meeting with her today.
Contrary to what the psych said last week, he is 1kg LOWER than he was at the start in February. And last week when she made the above statement, he was 0.6kg lower than he was at the start in Feb. So she was talking out of her *$%@.
AND that's not taking into account the fact he has grown in height since then. In real terms, his BMI has dropped from 19.7 to 18.8 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!!!!!
*****
I am completely numb after our meeting [with camhs]. The long and the short of it is (and she 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 but only when patients are close to IP status and she believes our S 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 the graph is misleading because it doesn't go down to Zero - it starts at 17.5 BMI. By that she means that it wouldn't look so bad if there were loads of white space below it.
Yes, if S 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 500-800 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 pitifally 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 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 H was guns blazing on my side, he's now moving to the enemy's camp saying that our S's situation is different from other people, so in a way the pscyh 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 500 extra cals, preferable 800 extra cals per day. We got to around 460 cals and he wouldn't budge. ED just won't let him and I have told that to the psych until I'm blue in the face.
I have to have a think about my next move with the psych 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 H started to ask me what tiles I fancied for the new bathroom... that almost tipped me over the edge...)
Also, 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 hols looming in 2 weeks (ha ha ha, S 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 the psych and at the back I'll make notes for my ammo to fight the dietitian issue.
If I have any energy...
Screaming, shouting and bullying
July 05, 2010
I'm fed up to the back teeth of shouting and screaming sessions and the feeling that I'm being bullied by ED and my son. The slightest mention of food, eating, etc and he goes crazy, screaming, shouting and slamming doors, threatening to phone our psychiatrist to tell on me (the psychiatrist who has insisted we keep talk about food to a minimum and keep it low key "because it's not helpful to your son"). (Tell me HOW do you help your child recover from an ED by doing that??!!)
As he continues to lose weight, I feel powerless and helpless. I am also painfully aware of what all this is doing to me, physically and mentally. I am shattered and almost feel like giving up and letting him continue the downward spiral towards hospital.
*****
Thanks everyone. Difficult to 'prepare and serve' the food when the only bit I'm 'permitted' to manage (thanks to the psych's decision) is the evening meal (with the blooming mozzie buzzing around... thanks cjb for the advice...) That's what frustrates me so much... seeing him serve up his breakfast, snack (rare) and lunch... he does try hard but ED always manages to put the brakes on.
Today I am just knackered and suffering from anxiety and lack of sleep (due to anxiety). And doing too much. Need to take time out probably.
Holiday... and ED came too...
Aug 02, 2010
Oh yes, ED was a well and truly present stowaway on our holiday / vacation in France the past 2 weeks... Result = over half a kg more weight loss on top of the 1.5kg weight loss the previous week.
We only had 3 threats of "ending it all" plus several complete emotional "meltdowns" and generally cutting back on food, refusing ice creams, treats, etc and doing compulsive exercising plus not being able to cope with travelling days when he was "doing nothing" (i.e. hadn't earned the "right to eat") - and meals out were an absolute nightmare. It was as if every single ED trait had waited for our holiday, deluging us with ED at its nastiest and most vicious.
With normal holidays, you leave stressful things like work, etc behind. With ED you take it all with you. While the sun is shining and all around you are having fun, you're in a horribly surreal parallel world.
My stress levels were stratospheric...
No more holidays until ED is well and truly gone.
*****
Well, at the last count, our psych was talking about only needing to see S once a MONTH from now onwards because he'd made such smashing progress. Needless to say we will be disputing that decision...
Good news is that, so far, fingers crossed, S has slipped back into the eating regime without too much fuss (after unsuccessfully trying to negotiate meal changes with me repeating "Come back to me when you're WR and you can make some meal choices, but not until then".)
We have a lot of weight to put back on as, apart from 2 weeks of weight gain, he has lost weight consistently since mid April!!!!!!!!!!!!! So much for the psych's "once a month" decision, hey... goodness only knows why she came to that conclusion....
Shocking, when you realise he's been losing weight for so long!!!!!
*****
Back on the straight-and-narrow eating plan worked so well yesterday until he found out he almost had 300 cals too many because I'd overlooked some earlier food. He went absolutely ballistic (as if he'd have metamorphosed into billy bunter overnight if that had happened), screamed that he couldn't live here any more, started packing his bags and we had to hoover up the house keys to stop him leaving home.
What on earth do you do in these situations? Continuous flying-off-the-handle threats of doing himself in and / or leaving home at the slightest thing.
So last night was yet another 2am dressing-gown-and-cuppa for me because I couldn't sleep.
*****
Psych always says that nothing can be done unless he actively "does something"... and she insists he isn't clinically depressed and won't insist on ADs (says he has to agree to take them and he won't). Our hands are tied and it is so frustrating - and terrifying.
*****
He is refusing point blank to "play ball" and just screams at me to "B*gger or f*ck off", saying the only reason he's still at home is because his dad told him he had to stay (my H threatened to dial 999 if he left with his bags). Son won't talk to me unless it's screaming. It's as if he hates me.
Unfortunately he BMI is too high for hospital admission and it would take some weeks of weight loss for him to get there but this is the way I feel it is heading and it breaks my heart.
Meanwhile I'm cancelling work and all appointments because I can't leave him for a moment.
How will we ever get to mental recovery / WR?
Mum hatred, threats to run away, etc
3 Aug 2010
I wondered what everyone else's experience is of Mum Hatred when your son or daughter refuses to speak to you and hates you with a vengeance making it impossible for you to support them through this. It's something that's materialised in the last few weeks. Also, son has gone AWOL on several occasions, today climbing out of the window because I wouldn't produce the house keys. Luckily he returned, but he refuses point blank to speak to me and I can't see this improving. Impossible to do meals or anything as he's also refusing to eat (or just eating what and when it pleases him). Last night he packed his bags (for the second time) screaming he was leaving home, but stayed after long discussions with his Dad. Today he said the only reason he'd stayed was because his Dad had told him of the consequences of running away (i.e. police, etc).
This is a horrible situation.
*****
He is calmer today. But we are living on a knife-edge.
S has banned us from talking about food or participating in any way with his eating. If we do, he explodes. So we can't carry on feeding him as normal because he won't let us.
All we can do is to hope we get some sense out of our pysch when we see her on Friday after a 4 week absence but I imagine it'll just be more of the "try and eat more" / "He just needs some space and that's why he's threatening these actions" sort of stuff plus the finger pointing at me, the neurotic mother.
*****
He is in a much better mood, thank God, and has unpacked his bags... and has actually hugged me back, but I am having to be oh so so so careful what I say and do in case it all kicks off again. I wish we had the money to go private but it's so much a case of "how long is a piece of string" that we'd probably run out of dosh pretty quickly. Also, as I have said before, how do I know the grass will be any greener, hey...
CAMHS really don't give a damn and it's obvious by the way they continually say they are not an emergency service and we can't just drop in when we feel like it. And of course I'm tarred as neurotic and guilty of not giving son space. I will be told off on Friday for troubling the duty psych yesterday when mine was off sick, I know I will. But what the heck.
*****
Friday was so bland i can't really describe it here, i can scarcely remember what was said except psych didn't seem unduly concerned about the continuing weight loss, preferring to focus on S's depression over the next few weeks. But I guess she has to focus on that too. I did keep repeating over and over again that I want her to focus on BOTH issues - weight and depression. H is delighted with what she as a "professional" says. Somehow she always wins him over and I am Big Bad Batty once again, ploughing a lonely furrow, and "going against all the professional advice" (quote H).
How can I complain when the only ammo I have is S's weight loss. Already with regards to the loss of the dietitian I have seen all of them close ranks - amazing!!!
But meanwhile S is trying hard to eat well and is managing to put back 2500-600 cals per day which is better than nothing...
*****
Just got a double prescription for medication so I can "Keep calm and carry on" (to coin a wartime phrase I saw on a cushion which I nearly bought yesterday). I voiced all my concerns to the doc (one of the oldest and most experienced in our practice) yet all he did was nod his head and say very little. The other phrase "closing ranks" came to mind....
Even he said that ED treatment is all about addressing mood / mind issues first and with the improvement of these comes weight gain. While you and I know it should be the other way round... Meanwhile son's mood is rock bottom today and I dread another showdown... He has lost all his joy and zest for life and I can't remember the last time he smiled or laughed genuinely; he just skulks around the house looking like the world's about to end.
Notes to CAMHS - S's depression
Rather than alternate between individual and family sessions, I'd like to see an intensive course of individual weekly sessions with any family sessions in addition to these. I feel the individual sessions are vital because S's depression and despair have hit rock bottom. He is "low" all the time, but used to only get ultra depressed and in complete despair every so often. Now it's virtually every day, all day. It has nothing to do with me "going on at him" because I've kept completely quiet, rarely mentioning food, anorexia, etc.
I believe he's reached a new dark and dangerous mood cycle and could do something silly very easily. This puts me on a knife edge every minute of the day and I am seriously worried.
He is not just back-sliding, he's going backwards rapidly. We've seen some very abnormal anorexia behaviours and the "animal cries" / crashing around / uncontrollable weeping at mealtimes are back.
I would like to see S on medication and I would like you to promote the idea of this to him - if for no other reason than to make it easier for me to take care of him when his mood deteriorates dangerously. He can’t do this on his own; he needs help. And he is, without doubt, getting much, much worse.
Also, it might be useful or relevant to know that there is a history of similarly manifesting depression in H’s family: his father, brother, sister and himself.
S's weight loss
I am still not clear what CAMHS plan to do about this. At first it appeared that CAMHS would step in if S lost weight consistently. But this hasn’t happened. At this stage, I would like to be clear about what action you plan to take next.
S's weight has gone down consistently since 28th May. This appears to be against the NICE guidelines which recommend a weight increase of 0.5kg per week. He may not be at a dangerous level now but he could be before too long.
He refuses to let us take control or even talk about food / eating / anorexia so we can't encourage him to increase his food intake.
As a weight gain regime this obviously isn't working and it could get serious if left unchecked.
If the plan is to change his mood first and with it will come the weight gain, then this could take months. Surely his weight could be at dangerous levels by then?
And with the weight loss comes mood deterioration and the return of old anorexic habits and behaviours
As a parent I am seriously worried and need to know what your plans are to turn this around.
PS: in the end I spoke to her on the phone and all of what she said sounded OK (except she said it's all a case of what S wants, not what we want because he's not a little boy any more. If he feels individual sessions are helpful, then he can have them. If he doesn't want to take medication, then she can't push it. Fair enough). But I've had all this talk stuff before with little action. I just hope this time she walks her talk, so to speak.
*****
We seem to have entered a new and very dark phase whereby it's unusual for S to be "normal" in his behaviour and most likely he's crashing around the house, screaming, swearing, crying out like an animal... the works. The slightest thing can bring this on and I am finding it a mega strain (to say the least) while H is working away and there's just me. If I bring any other adult into the equation, he just walks out. I have explained this to the psych and re-explained it to her, with the usual response. Before, it used to be a case of he was like this now and again. For the past couple of weeks it's been the other way round and I really can't cope. I am taking 5 days off next week as H takes S to inlaws again and I escape to my little "bolt hole" by the sea like I did in June. I seriously worry that I won't want to come back. Really and truly I feel like running away myself...
*****
In an ideal world, I'd go for longer, but with H working away, there's only me.
H took S to inlaws back in June and there were some major problems around food / mood, so they've seen it all before so hopefully will be prepared. I just feel the need to delegate everything, lock, stock and barrel. Last time I did this S texted me with a "I can't stand this any longer" but thankfully it was resolved though it made my "time out" pretty stressful.
Telling my GP anything seems to be pretty useless as they are really not in the slightest bit interested as was demonstrated when I visited my GP and voiced my concerns earlier this week. Just sympathetic head nodding and no action, regardless of what I said. But he did give me a prescription for Fluoxetine (Prozac).
We have 2 more psych sessions before we go away, the first being tomorrow. Yet again pscyh has said that if S continues to lose weight she will step in and insist that I take back control of certain eating elements. So I asked when that would be, but she said there isn't "a specific cut off point"... We shall see what happens tomorrow. Had a nightmarish morning with S in a heck of a nasty, evil mood. So that's one good day this week and the rest all pretty hellish.
*****
The trouble is S is getting to the stage where he is now refusing point blank to have treatment or anything to do with anything medical. We had to virtually carry him to CAMHS this morning and that was only because H arrived home just as I'd given up. Despite now being diagnosed with clinical depression (finally, at long last) he refuses to take medication. He refuses to go to the doc. He refuses anything. Even with the Maudsley Method I'd find it impossible to re-feed him as he'd refuse to eat.
*****
H "read the riot act" to psych on Friday and overstayed his welcome by an hour! For the very first time, psych was worried about S and went into detail about the damage he could be doing to his body, said he MUST gain weight this week or I take back control of the eating. I think the penny has dropped with her that, yes, this is serious and, yes, she must take what we parents say seriously. I felt quite confident when H came home and told me all this in depth. Also, S stayed in the entire session despite threatening to walk about after 5 mins. He seems to have taken what was said seriously and is eating more. We have another session on Wed, so will see what happens. Me, I was totally and utterly in pieces after last week which was our worst week to date. Spent most of the week in bed as it made me feel physically ill. Not ideal, I know, when we're supposed to be strong, etc but some things just really take it out of you.
More to come when I get around to it...
