7yr old with possible Chronic Fatigue

[roundabout1]

My dd has been ill since January, started with sore throat, swollen glands generally unwell. Followed quickly by two bouts of tonsillitis and has never been completely right since. She has a good few days & then bad days. We are trying to regulate her activity but it is so hard especially with a boisterous dd2. She was tested for Glandular Fever & other things May time but came back negative. Finally saw a Paed in July who tested thyroid, blood sugar & loads more all negative & he diagnosed a post viral illness but suspected it would get better. We saw him again last month & he has ordered more bloods but did say he suspected it may be Chronic Fatigue. He is requesting our GP to refer us to Bath to Dr Cawley. Initially I was pleased about this as at least it is action & we have had huge problems with school seeing dd's illness as genuine but now feel deflated by it all, trying to regulate her activity is so hard & at the moment feel such an awful mum as feel like I'm going round the bend by being stuck in the house all the time.

How old is she?
My dd has had something a bit similar but at 13

She was 6 when it started , 7 now. She has got quite isolated through it as is quite shy anyway & a born worrier so we are stuck in a loop of feeling ill, gets better, worries about feeling ill, realises that she is ok but then over does it and is feeling ill again

Check out AYME - I was 16 when I got ill, and they have a wonderful 'young sufferers' section. There is a message board, you can arrange penpals, and then send out a magazine once every few months too.

Is she struggling walking distances? I know you might hate the idea, but using a stick and wheelchair meant I was able to go from housebound to relative independence again. My mum really struggled as she felt like that was 'giving in' but it made a world of difference to me.

I think it takes a while to get the balance of doing enough so you don't go crazy, and doing too much. I certainly still manage to do too much now at times. Don't feel bad on days she is ill.

Dr Cawley is supposed to be superb, for what its worth.

AYME.

My friends 8 yr old dd had fantastic results with the lightening process

santa - thank you for the link. She is ok walking short distances, school is a 10 min walk & on good days that is fine & often she feels better for walking there. On bad days she is breathless & has to keep sitting down (obviously on those days she's not in school) Her symptoms are mild compared to the more sever on the scale so obviously I am very relieved at that. In a way if we had a definite diagnosis it would make things easier especially with school but also in terms of explaining it to her. She's not been in school since tuesday so have been stuck in since then, we did go on a 5 min walk this morning. What frustrates me is how then she's is full of beans this afternoon playing (& winding up) dd2 yet we are still stuck in & now she is feeling bad, face is all swollen & is listless & breathless as she went a bit over the top playing. I must sound like an awful mum

hillybilly - thanks off to google that now

No, you're not an awful mum. She sounds like a CFS sufferer - nothing to do with you! Its the way it goes, and you really cannot blame yourself for it.

There is something called the Spoon Theory which was created by a woman to explain her chronic health condition to a friend, but because its a practical thing, it might help explain it to her about monitoring her energy levels a bit more?

santa - thanks for reminding me about the spoons theory. I saw it ages ago on the net but had since forgotten about it. I explained about it late last night after yet another night of her not being able to sleep. She really picked up on it so I will keep reminding her about it when she is overdoing it.