Title says it all really. As most of you know ds1 is gluten free, but eats well - some would say like a horse, has gf oats with fruit and full fat milk every day for breakfast, takes fruit for his playtime snack, has two gf sandwiches for lunch, plus a gf cake or biscuit of some sort and a pot or piece of fruit, another snack like toast and jam, scone, a yoghurt, another gf treat of some sort after school then a huge evening meal of things like, gf pasta with home made sauce containing a stack of veggies and grated cheese on top, macaroni cheese, veg risotto, fajitas, mediterranean bake with quorn, home made soups and stews with or without lentils, spanish omelette with lots of veg and a salad, occasionally oven chips and mushroom burgers or home made pizza etc etc. At the weekends he eats similarly, but has an additional tofu smoothie for breakfast. The dietician he was under was very impressed with his diet and felt it didn't need addressing.
He absolutely will not eat potatoes, peas, sweetcorn or chocolate, but other than that is not that fussy.
So why is he losing weight? He is honestly all bones now. Weighed him this morning and he's 3lbs down since the dietician weighed him last September and I know the Paed who weighed him in January said he'd gained since the September weigh-in. He should have gained 8lbs to keep him between the 9th and 25th centiles, but he's dropped down to the 4th and still appears to be losing. You can count his ribs, his legs are like sticks and when he bends forwards you can clearly see his spine through his t-shirt. 
He was 'glutened' last Friday when his teachers failed to stop him from sampling the food another class had cooked and came up with red angry sores around his mouth within an hour of eating them, then he was moody, emotional and exhausted all weekend and looked a really odd colour with purple bags under his eyes.
I hesitated to send him to school on Monday, but he wanted to go and seemed a little better so I did, but we both lived to regret it. He was so exhausted and told me that evening that at one point he was wobbly and dizzy and felt like his legs might give out from under him. Then he ended up getting into a fight with two boys from a different year, because they were killing bugs and he sees himself as a bug protector extrordinaire. He was already feeling really rough, so his fuse was shorter than ususal and for the first time ever he lost his temper and punched them, hard enough to leave a mark - cue me being called into school at pick up time.
I have kept him off today and don't intend to send him back in until after the strike, which he would have had off anyway. He wants to go in on Friday because they're having a special day to do with one of their recent study projects. At lunch time I forgot I'd made his lunch last night and put it in the fridge, so made him another and he ate both! That's four sandwiches, a coconut macaroon, a pot of strawberries and a pear! I don't know where he puts it all because he's tiny.
Its all so non-specific, I know I won't get him into the GPs as he's not 'acute' enough to pass triage and appointments are running with a two week wait at the moment - I'm going in myself to discuss my neuro problems this Thursday and it was two weeks ago that I ended up in A&E. I will book him one, going to call after typing this, but what do I do with him in the meantime - I'm not sure he can cope with all the end of term mayhem, but he really wants to go, not least of all to spend time with his best friend before the holidays start.
Sorry this is so long, I am just worrying thinking aloud really.
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Worried about ds1's - losing weight and lethargic
moosemama · 28/06/2011 17:20
Thanks Ellen. He eats every morsel I put in front of him, bar the crusts off his gf bread (he hates the texture).
Good idea to total up his calories - I'm already using My Fitness Pal to record my own calorie intake, so I can easily tot it all up using that.
My feeling is that its a malabsorption issue, they never got to the bottom of his digestive problems and he still has reflux and really unpleasant stools. Stools have improved a lot since he went him gf, but they're still not what I'd call normal.
I'd love to up his calories, but the obvious choices are high fat and set off his reflux. Forgot earlier, the other thing he won't eat is nuts, which is a bit of a problem being veggie.
He shouldn't be anaemic, he has a multi-vitamin supplement every day plus a spatone sachet in his morning drink. I can't help wondering about B12 though.
He's not what I would call a hyper child, spends a lot of time sitting reading and doesn't charge around at playtimes. He probably does burn off a fair amount in anxiety though.
Does Complan have a grainy texture at all? If not it might be worth a try, but perhaps should speak to the GP first. Have booked him in the week after next to see them.
He told me earlier that he feels nauseaus nearly all the time and when we went to fetch ds2 from school earlier he was leaning on me for support.
Perhaps its just an unfortunate combination of end of term stress, anxiety and some sort of vit/min deficiency?
He sounds much more run down that my DS, TBH, moose. As I said, I'm just treating the symptoms. 
Much better to try to find out the cause. Get past the triage by lying exaggerating slightly. Bochead's apricot idea wouldn't hurt, either. Complan can be made with water or milk, it's fairly smooth, I make it into a paste with some warmed milk then top up with cold. DS sees it as a treat!
Cross posted Bochead. We add raisins and apricots to his porridge every morning along with either berries or pear/apple and there's iron in his multi-vits and of he has a spatone sachet every morning as well.
See now I'm remembering all the things he won't eat. Avocado is another one. He used to lap it up when he was little, but won't touch it these days. I love them myself and everyone else in the family eats them.
Yes we are veggie, but ds1 is the most militant after reading a flipping book about meat farming at school in year 1. His multi-vitamin supplement has all the B's except for B12, which is why I was wondering if he might be deficient in that.
Probiotics are a good idea, we used to do them regularly, but we're on a tight budget at the moment and can't afford to buy them as well as the multi-vitamins and omega oil. I will get some for him this week though, its got to be worth a try.
He was only glutened last Friday afternoon and I do think its had an impact, but the weightloss has obviously taken longer than that to get to this point. I think it snuck up on us, because he's always been skinny and in his clothes you tend not to notice as much. Is only now its warmer and he's wearing thinner tshirts and shorts that its become so painfully obvious. He's also been starting to get a bit coy about getting changed etc recently and I've been trying to afford him some privacy about these things (hence the 3 pairs of socks and 2 pairs of pants episode at bath time last weekend 
).
I feel like the worst Mum for not noticing sooner. It shouldn't have taken for him to get this run down before I realised.
Thanks Ellen, I know I had complan when I had my first ever CFS crisis, but that was 22 years ago now!
at running from room to room while he's on the computer. My ds turns into a statue when he's on ds time, he just activates his super-powered thumbs.
I think he's at his most active when he is supposed to be sitting at his desk in the classroom to be honest. He could be burning up a lot of calories during the school-day that way and I wouldn't know.
I weigh my 3 every 3 months. (Just a little bit obsessive 
) But DS2 is always poorly in the winter, haven't ever really got to the bottom of it. There's always something.
I think I got used to the dietician and paed doing it, but they've dropped his appointments back to bi-annual and he doesn't see the dietician anymore (she was less than no help anyway ).
I weighed all three this morning and the other two are doing fine - right on target, its just ds1.
Just been reading some stuff online about B12 deficiency and it does seem to fit - he's prone to cracks at the corners of his mouth and apparently that's a common sign. Even more alarming is that if it goes undetected it can cause developmental delay and other loss of brain function such as memory. If it is that, it might go some way towards explaining why he seems to have suddenly become more 'autistic' in his behaviour over the past few weeks. Very interesting, I think I'll definitely ask the GP if he can have a blood test to check his vitamin and mineral levels.
Only in animal products. Meat, dairy, eggs - but the eggs also contain a substance that blocks absorption (biotin I think 
). Its also in fortified breads and cereals, but of course ds1 doesn't eat any of those.
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