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Possible CFS: Advice needed for fatigued 18 year old DS

(11 Posts)
Seoulsister Fri 28-Nov-14 17:20:28

This school year started badly-DS had what seemed to be an eye infection in his right eye. It was treated with eye drops that seemed to dry his eyes up at night-he kept getting up to soak them open. Later on, we thought it had re-occurred, but another GP in the practice pointed out he had eczema round his eye (as he did on his arm) and suggested the rubbing was making his eye red. Putting cream on the eczema seemed to work.

Along with this, the urticaria which he had suffered earlier in the summer seemed to have got worse-every time he got hot or sweated. It subsided after a while, but sometimes involved his eyes. He now has Fexofenadine daily. Also has mild asthma, worse with a cold, although he hasn't had any noticeable viruses in the last few months, beyond the possible eye thing.

He is suffering both physical and mental, although still insists on going to the gym when he can. His college attendance is right down. They are quite understanding. (He got top AS grades and they like him.)

I am quite aware we may have to give college a miss sooner or later for this year as he is really just going to occasional lessons. He does seem to want to be studying and getting better, and is quite wistful about university offers and invites he can't do much about.

I am sure I'm not the first parent to feel a bit lost. He has had three lots of blood tests-full counts of cells, checks on all organs, diabetes, thyroid, liver, kidneys, (creatine) checks for mono, the allergy ones because of the urticarial and nothing abnormal. He says he is sick of having tests, waiting a week and then having to ring up. When I have checked on sites about CFS/ME he seems to have had all the blood tests recommended for excluding other stuff.

I know that depression can also be blamed, but he was quite happy until he started getting low physically, and says he is down because he can't get on with his life.

We live near Cambridge, so any local guidance would also be much appreciated.

Best to all parents living with illness.

gingertreat Fri 28-Nov-14 17:32:41

I think your son is low in energy level in his body.
Supply of the energetic food (not the same as high in calories) could be one of ways to help him with it.
By energetic food I mean broth on lamb, soups, cooked and balanced meals (and much more nice and nutrition food). Elimination of junk, sweets and juices and sugary drink is essential.
This way his body will regain the energy and help him to fight cold infections, even help to heel the asthma etc...

RawCoconutMacaroon Fri 28-Nov-14 17:56:23

With those symptoms... Has he had a blood test/biopsy for Coeliac? If he HAS, and it was negative it may still be worth doing a strict exclusion diet for a few weeks (wheat, barley, rye and oats at the minimum but preferably ALL grains including rice and maize/corn as some people cross react to gluten-like proteins in these). And in any case, it may not be the gluten, people can react to many proteins in grains, and to additives used in processed grain flours.

Google Paleo or primal exclusion diet, or Whole30 if you are interested in trying this, if his symptoms are caused by the excluded food, you would know very quickly (be aware that symptoms can get worse for a few days, flu and headache for example). Worth a try, it might work wonders for him, if it doesnt, at least you know it's NOT gluten/grains that at the root of it.

But don't do an exclusion if he's not had a blood test/biopsy for Coeliac.

Seoulsister Fri 28-Nov-14 18:10:49

Thank you .Will check the coeliac aspect of his allergy tests. I don't think he was tested for that. He doesn't eat bread but does have oats and quinoa. He used to be much heavier, but went on a strict weight reduction/gym regime a couple of years ago. Since then he's always been aware of what he's eating so he's used to managing and excluding.

Looseleaf Fri 28-Nov-14 18:16:41

I second rawcoconut as I was ill with ME-type tiredness until I was give a blood test that showed IgA response to foods (I think) and it helped pinpoint that I was reacting to wheat, corn and rice. Without these in my diet I was better within two weeks and having been unable to walk far I can now behave normally again and I'll never forget the anguish of not knowing how to get better and stop feeling drained!

I do hope you find the answer

CMOTDibbler Fri 28-Nov-14 18:17:36

If he is restricting his diet a lot, have you considered whether he might have an eating disorder?
I know one teen who had loads of tests for fatigue and other problems but was 'struggling on, doing all she could' but it turned out that she was pretty severely anorexic. She'd restricted her diet massively by turning vegetarian and then having to be gluten free (she wasn't coeliac, but told her family she'd been recommended it to help with her issues) so it seemed much less obvious.

Looseleaf Fri 28-Nov-14 18:18:57

Ah, that sounds less likely then. Maybe try gluten free oats just in case, though not before he's had a test for coeliac if having one (seems an obvious thing to try and rule out)

Seoulsister Fri 28-Nov-14 19:56:24

Thanks. I do think eating plays a part, although since he's been feeling low, he's been eating more and has gained some weight. It's difficult to know if it's a kind of hangover. The GP did a load of checks taking this into account.

gingertreat Sat 29-Nov-14 09:36:34

Seoulsister, is he craving sweets?
Eating more not necessary helpful. I would say 'quality rather than quantity'.
I can suggest you few tips on eating for teen if you wish.

Seoulsister Sat 29-Nov-14 14:11:55

No, gingertreat, he doesn't eat sweets (I'm not sure if he craves them but I have seen no sign he indulges as he is fairly fanatical about his shape and fitness.What he does eat seems generally ok, although he goes in for things in phases. At the moment he makes smoothies and likes tuna and soup (I don't think he eats quite enough, but he is less active than usual. )Not long ago it was more steak, chicken, quinoa, vegetables and apples.

Thank you for ideas. We will keep on.

gingertreat Sun 30-Nov-14 10:20:03

Very good for him to have soups. Also broths and cooked seasonal vegetables and fruits are good. I hear lots of complains from mums of teens about their fatigue. They study, have very active lifestyle and on the top of this access to lots of junk, sugary drinks, icecreams etc...
Fish, lamb, veal, are also nice. However, milk and raw fruits can be cause of slower digestion.

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