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Worried about ds1's - losing weight and lethargic

(34 Posts)
moosemama Tue 28-Jun-11 17:20:14

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. sad

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.

EllenJaneisnotmyname Tue 28-Jun-11 18:42:19

It's another tricky one. DS2 is on 4x Complan with full fat milk per week to keep his weight up. It's GF and veggie, comes in chocolate, strawberry, banana, vanilla (and chicken!) flavours. It's not treating the cause of his weight loss, but he's not losing anymore. TBH he doesn't eat as healthily as your DS and he's a gluten addict, but GF/CF didn't help him. He lost weight when on the GF diet and has never recovered.

He doesn't have a big appetite and he's very active, bordering on hyperactive, due to hypo-sensitivity, and just burns up calories at a tremendous rate. He lost a couple of pounds over 3 months, and weighed the same as a year previously, hence Complan. He gets a normal diet, 3 meals plus fruit snacks and occasional sweets, plus the Complan. Weight is slowly increasing, still on 5th centile for age related BMI.

I would work out a week's worth of calories for your DS, going by what he finishes, not what you prepare, and reckon it up. If he's having sufficient go see the GP in case there's some cause. Is he anaemic? Hopefully someone will have more ideas. I've just gone for treating the symptoms, rather than finding the cause.

EllenJaneisnotmyname Tue 28-Jun-11 18:45:54

Don't worry about weight centiles, they don't take height into account. Go online and google BMI for children and work out his BMI centile. BMI targets for children vary with age, unlike adult ones, a much better measure.

bochead Tue 28-Jun-11 19:30:20

I was wondering too if he's anemic?

If he is apricots are as good a source of iron as red meat. Rich fruit cake/cookies made with loadsa dried apricots were a staple mid morning snack for ds. (You'll already have some gluten free cake recipes you can adapt I'm sure). Try and eat iron righ food in the same meal as summat with vit C so so stir fry beef and peppers followed by a bit of melon.

I used to add a tablespoon of avocado oil to salads, stirfrys (after cooking the stirfry) to up the calorie count in a "healthy fat way" until this year when my sparrow finally started to fill out. Avocados are like egss and olive - a brill almost "complete food" and they are in season.

Nuts are high nutrition and really good for quick munch on the way home from school style snacking. I'm a big fan of homemade nut butters (shop bought got too dear) and these are reasonably calorie/good fat rich.

Also your diet looked veggie? Are you? There's a b vit that veggies/vegans get short on that can prevent absorbtion of other nutrition. Perhaps a supplement of b vit would help?

The last of my mad brain storm ideas was that if he's recently been glutened it might have messed up the absorbtion ability of his gut a bit. In which case a course of pro-biotics might help (based on my experiences with a dairy intolerant lad).

moosemama Tue 28-Jun-11 19:43:55

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. sad

Perhaps its just an unfortunate combination of end of term stress, anxiety and some sort of vit/min deficiency?

EllenJaneisnotmyname Tue 28-Jun-11 19:54:19

He sounds much more run down that my DS, TBH, moose. As I said, I'm just treating the symptoms. blush 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!

EllenJaneisnotmyname Tue 28-Jun-11 19:56:35

DS burns up loads of calories just playing on the computer. It involves excessive fidgeting, really, and some running from room to room!

moosemama Tue 28-Jun-11 19:56:57

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 hmm).

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. sad

moosemama Tue 28-Jun-11 20:00:59

Thanks Ellen, I know I had complan when I had my first ever CFS crisis, but that was 22 years ago now!

shock 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.

EllenJaneisnotmyname Tue 28-Jun-11 20:04:32

I weigh my 3 every 3 months. (Just a little bit obsessive grin ) But DS2 is always poorly in the winter, haven't ever really got to the bottom of it. There's always something.

moosemama Tue 28-Jun-11 20:22:56

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 hmm).

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.

pedalpants Tue 28-Jun-11 20:46:39

i think the blood test is a good idea. don't beat yourself up though, his diet sounds amazing!

i lost a lot of weight last year and got myself back on track with complan, taking more time over meals and doing less activities. sorry, probaby not really comparable, but i was surprised by how much difference doing less made. i didn't change my diet. perhaps he needs some slob out time?!

moosemama Tue 28-Jun-11 21:05:59

Thanks pedalpants. That's exacty what I've got him doing this week. He's barely moved from one corner of the sofa today and I've told him I want him to stay in bed tomorrow. He wasn't impressed, but I think it has to be done.

EllenJaneisnotmyname Tue 28-Jun-11 21:07:26

Where is B12 found naturally, moose?

moosemama Tue 28-Jun-11 21:19:54

Only in animal products. Meat, dairy, eggs - but the eggs also contain a substance that blocks absorption (biotin I think confused). Its also in fortified breads and cereals, but of course ds1 doesn't eat any of those.

EllenJaneisnotmyname Tue 28-Jun-11 21:32:37

Thanks, just wondered. Milk and cheese, then?

moosemama Tue 28-Jun-11 21:40:21

Yup, he has a lot of cheese in his diet already, milk on his porridge in the morning and until very recently he was having warm milk at bedtime, but I cut it out because he kept having bad stomachs and I thought it could be the increase in dairy. You only need very small amounts of B12 daily and the body keeps a three-ish year store of it, but then it can slowly deplete and that's when you start getting symptoms. Gut problems like my ds's can mean its not being absorbed properly even if he's ingesting enough though.

EllenJaneisnotmyname Tue 28-Jun-11 21:51:19

Absorption problem, then. Good luck with the GP. Hope it's something nice and easy to sort.

notapizzaeater Wed 29-Jun-11 13:54:37

My DS is coeliac and has been told he can only have 25g of GF oats a day and not every day as the bowel can treat them as gluten - thus creating a malabsorption ?

If hes been glutened then it can take weeks for his bowel to return to normal and he wont be absorbing much at the moment.

notapizzaeater Wed 29-Jun-11 13:56:37

Will he have "fish" omega 3 ? I bought 3 for 2 from Boots and DS will not eat them - I could post them out to you ?

bochead Wed 29-Jun-11 14:35:06

If he looks really run down can you not persuade the GP to let you have some probiotic powder on prescription for him? Same with the B12 supplement? I've rung the dietician and brought the appointment forward in the past, will yours see you early?

It'd be nice if you could turn the corner on this before the longest term and winter flu season hit.

B12 deficiency is the one that leads to pernicous (sp??) aneamia which is nasty : ( even without any asd stuff going on. If he does have p aneamia(can't spell it) then he'll need double doses of greens to up his vitamin K levels in addititon to the standard vit C advice before you see any real improvement.

moosemama Wed 29-Jun-11 14:38:37

Thank you notapizzaeater, that's interesting about the gf oats. He's not actually coeliac, according to the blood test, but he'd been ill and not eaten anything at all for a week - let alone gluten, for 10 days the week before his test.

Thank you so much for the offer of omega oils - its really kind of you, but he already takes a high quality vegetarian one made from algae on a daily basis. Its made a huge difference to his sleep pattern in particular, as well as him seeming to be a bit more in our world, iykwim.

moosemama Wed 29-Jun-11 14:44:36

Cross posted again bochead.

We were discharged from the dietician, as she didn't feel there was anything she could do to help. She did say that if we had any problems we just have to call her office and she'd arrange another appointment - so I might do that after we've seen the GP.

Called the GPs this morning and he was put on the telephone triage list. Had a long talk with the triage doctor and agreed that he didn't need to be seen urgently enough to take up an emergency triage appointment, but does need to be seen sooner rather than later, so we have an appointment at 9.30 am tomorrow morning. I will ask about prescription probiotics and B12.

My grandad had pernicious anaemia and was really poorly with it, so I really hope its not that. He's just shown me a mouth ulcer that's appeared this morning though, and unfortunately that's another indicator for B12 deficiency. Fortunately he doesn't have a problem eating his greens and will eat platefuls of them at a time.

notapizzaeater Wed 29-Jun-11 14:51:34

Just another thought - if DS has oats (not tried him yet with the GF ones - waiting for the school hols) he gets mouth ulcers - never ever had them till he went GF then 4 months later school cook made him some flapjacks with GF flour and normal oats - he'd got 5 mouth ulcers between lunch time and me collecting him at 3.30

IndigoBell Wed 29-Jun-11 14:52:56

MooseMama - this supplement we've all been discussing on another thread contains B12........

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