We were going along quite well with our son 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 he 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 our son take control of his own eating, I ask myself privately, without him cheating or cutting back or avoiding stuff? The psychiatrist 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 our son's decision to go back to school next week (after 2 months away)?
Meanwhile I won't let the eating disorder bully us in any way. I am sticking my ground and telling my son that there is no negotiation over what he eats.
And...
It all ended in meltdown last night which is (thankfully) something we haven't had for a few weeks (we 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. My son says it's his way of getting the eating disorder out of his head and getting himself back in control, but it's a really distressing way to do it!!!! My son is well aware when it's the eating disorder that's doing the talking and arguing whereas my son 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 the psychiatrist until next Friday. My son 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 (my son says 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 the Plan A we had before which was for my son 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? My husband thinks it'll be a total disaster...
Would appreciate your (always so wise!!!) advice!
And...
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 photo) and the weeks that preceded that... the weeks when I'd get deluged with distressing texts from my son who'd be lurking in the school toilets or hiding in the corner of the common room... interspersed with phone calls from the medical centre 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). On Thursday we're seeing the dietitian in the afternoon and on Friday afternoon we're seeing the psychiatrist. So, if necessary, on both occasions I could pick him up BEFORE lunch.
En route to our non-appointment today we picked up a couple of large paninis from the deli. My son 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 Ben without the eating disorder rearing his ugly head, though the eating disorder did appear briefly in a discussion about biscuits: I said I'd know Ben 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) - Ben (aka the eating disorder) 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. My son will go for the latter...
I was really hoping for some advice on all of 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...
And...
Phew... have we been through the mill since Monday! It was obviously too soon for my son 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 my husband coped with Ben...
On Monday morning Ben was in pieces as we drove to school. It 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 eating disorder 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 eating disorder 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 the eating disorder arrived and messed things up, Ben was having such a good time at school, too...
It makes you wonder if we'll ever be free of this horrible illness...
And...
Thanks so much for all your hugs.
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 cancellations, etc), so weigh-in time again... And Ben had some routine blood tests taken today to check everything is OK.
I'm taking myself off to the seaside for the weekend ON MY OWN (and I don't care if it rains).
He he he he, this weekend the eating disorder will have my 'no-nonsense' mother-in-law to contend with as Ben and his dad drive down to London to see her. The eating disorder 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...
She is totally committed to helping Ben beat this horrible condition (after all, she's the one that first urged me to take him to the GP).
And...
Thanks for all your comments, yet again...
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 Ben - and I believe it went in.
Trouble is, Ben has grown in height and hasn't increased in weight, as today's weigh-in showed, which has brought his BMI back down. 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 Ben 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 that Ben needs to be given the 'tools' to handle whatever it is that caused the eating disorder 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 psychiatrist about that. I hope she does!!!
Anyway, here comes the rain as I swan off to the seaside.
And...
Well here I am at the seaside and I don't belieeeeeve it, I've got a tummy bug!! So I'm sitting in bed looking at the (rainy) sea view and worrying about Ben and the eating disorder..
Been on the phone to my husband who's looking after Ben 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 my husband is having problems even getting Ben to eat 1500 calories or so, let alone the 2700 we're supposed to be on at the moment. And Ben 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 Ben'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 Ben 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...
Advice for this week's fats onslaught much appreciated...
And...
My husband had a nightmarish weekend with Ben at his parents' house. He 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 Ben came back noticeably thinner and my husband 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 my son 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 XX anyway.
In 30 mins we go to the GP for blood test results and a physical examination. Interested to see what he says.
And...
Re. school... the big problem is that we live too far away for me to go in and supervise lunch and snacks. Ben 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 centre 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...)
Ben 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 eating disorder. 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 psychiatrist for a 'family meeting'. I just know she's going to 'tell us off' as parents - bit of triangulation going on here with the eating disorder having won her over to his side i.e. she thinks she is talking to Ben but it's really the eating disorder speaking... (which Ben has admitted to us...)
I had a horrible nightmare last night. In it we got allocated a new psychiatrist of the 'old school' variety, really scary and strict, telling me off and shouting at me that I should be feeding Ben 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 Ben 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...!!!
Pasting this text in here I can almost 'feel' the stress that I was going through during this period when I was so desperately trying to get my son to eat a balanced diet. When it came to food, Ben's mind had lost much of its logic. It was as if black was now white. A topsy-turvy world that defied reason.
It also describes how difficult it was for Ben to be in school at this time and how he'd almost completely cut himself off from his friends. Plus, it also describes the unreliable nature of some of the CAMHS visits - sessions were cancelled, the dietitian forgot to make a note in her diary, people were on holiday and so on. And there is some of the triangulation that tended to go on at CAMHS as the eating disorder 'sided' with the people who appeared to be on its side.
It was getting to the stage where we couldn't take our eyes off the game plan for a moment for fear that our son would rebel and head backwards.
At this stage we were also seeing the CAMHS team (psychiatrist and nurse) fortnightly. Why only fortnightly? Because they felt he was doing So Well and didn't need weekly sessions.
Hmn...
No comments:
Post a Comment