Worried about ds1's - losing weight and lethargic

[moosemama]

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.

Quick update.

He has a throat infection, but not bad enough for antibiotics.

Doc was quite concerned about the weightloss (worked out he has lost at least half a stone since January and has slipped from the 25th to 2nd centile), so she's contacting the paed to ask him to bring forward his next appointment. Also been sent for a raft of blood tests, including B12, folate and iron plus all the usuals and a diabetes/glucose check. So its no brekkie for him tomorrow.

Glad they're taking it seriously. 7lbs is a fair amount. Hope the blood tests aren't too stressful for you him.

Thanks Ellen - by coincidence I'm having bloods taken at the same time - but I don't get any emla cream. At least one of us won't feel it I suppose.

He's usually fine with blood tests, thank goodness, so should be ok.

Just thought I'd follow up on this thread - as we've been to see the paed again today and he's reviewed the blood tests the GP did back then and they said all was fine with when I called for the results.

He wasn't good over the summer, his stomach was dire and the paed agreed that from what he was producing it definitely sounds like there was some sort of malabsorption going on. In addition, at his appointment a fortnight ago, they discovered his abdomen is very painful.

But, having gone through his blood results from June, it turns out that he's not B12 deficient but rather he has high levels of B12 in his blood, along with high protein levels and raised eosinophils.

According to the paed, these are really odd results for a vegetarian and he would be expected to have low levels of B12 or be deficient. The eosinophils are related to an immune/allergic reaction and high levels of protein are a sign of inflammation or infection.

So absolutely normal then - yeah, thanks GP!

The paed took stool samples two weeks ago, which have come back clear for any nasty bugs or pathogens, but the enzyme results have been delayed.

They are going to chase the enzyme results and let me know, but are stumped by his blood results. Dependent on the enzyme results they are going to see him again in a few months and we've got to note down any symptoms and their relation to food etc in the meantime. Reassuring that they're not desperate to see him again straight away, but not good in that he's still not right and suffering regularly with no sign of any end to it.

Yes, I never rely on "normal", I always have to chew through every line of results as some can be out of the ranges or below and still described overall as normal. You do have a bit of a project on your hands!

I am curious, did he have aminoacids test? That would show details of individual aminoacids maybe?

Do you think your ds is losing muscle - or is it fat? He could be growing in height?

Also, I recall my ds had muscle wasting (pronounced by a consultant) when vegeterian and eating gluten, the only sensible explanation I can think of was that there were not enough correct aminoacids/nutrients in his diet then and to maintain his very poor state of health, his body was effectively wasting away to sustain life. The way he looked was that arms and legs were thinning out especially from the joints direction (ie thin parts of limbs were becoming thinner and overall diameter was shrinking too).

He was tested for aminoacids and was deficient, but there was no supplement to address this so in the end we went back on meat in a low dose. There are some aminoacid supplements around in health food shops, but you need the full range, not a single one, unless you know what's deficient.

Can't think of anything else for now, but good luck, at least you are taken seriously.

No, I don't think they did aminoacid tests, they just said stool samples for pathogens and enzyme testing.

He has gained some height over the past year, but not much - about 2.5 cm I think, but I'd have to check his book to be exact.

His arms and legs are ridiculously thin, I can close and then slightly wrap my fore-finger and thumb around his upper arm. I think I will measure them and start keeping records of any changes though, because to me, they look like they are getting skinnier.

He has hypotonia, particuarly in his core and upper body, so there's very little bicep etc to be seen anyway, which I guess makes it a bit harder to judge.

I was searching MN last night for any references to raised B12 etc and found an old thread of yours from 2009. You mentioned aminoacid tests in that - am I right in thinking that would be a urine test?

We did blood aminoacids at first, after that we did urine approx once a year, blood more useful, but urine also show that the aminoacids were v low/deficient.
Read up on essential aminoacids, thing is with nutrients that deficiency of some could affect health. He could be too high in some but deficient in others and unable to process foods well, which might potentially explain that he is too high in B12? I am no expert except on my ds tho.

I would also check on zinc, which is a catalyst to many enzymes.

Thanks nightcat. I will do some reading on the aminoacids and zinc - when I've finished getting his SA request forms filled in, as that has to be done by the end of next week!