So, the diagnosis is Chronic Fatigue Syndrome (or ME).
The brain-numbingly brilliant news is that its nothing ‘serious’ – as in, not life threatening (however, we really haven’t been over-paranoid the last few months; they have been checking him closely as they did suspect lymphoma).
But it’s not.
He’s going to be okay.
On the downside, it’s a chronic condition, with a long long recovery. If we’re lucky, in 6mths time he may be doing 3-4 mornings at school a week.
He was very very loose about recovery time, but I suspect at least a year before he’s back to normal, possibly longer.
But hey ho. Onwards and upwards. We now have a diagnosis, know what we’re dealing with, and can move on. He has been referred to the CFS team who will work with him regularly, has to see the consultant (who was wonderful) every 6 weeks, he said acupuncture may help, and he will notify the school’s doctor who will recommend home-tutoring.
They don’t really know the cause of CFS – used to be known as Yuppy Flu, remember that? It’s often triggered off by one big virus like glandular fever (No.1 had last year) or a series of mini-virus’ (No.1’s had since November). Basically the body gets into a rut and simply ‘forgets’ how to get better again. Treatment varies as each patient has different symptoms – he has been referred to a team who will assess him, and then decide on a course of treatment right for him. Its basically slowly-slowly getting his energy and activity levels up, but super-carefully, as too much will knock him right back again. At the same time he needs to be monitored psychologically, both because one symptom is depression/mood swings/anxiety but also because the effect of a child being cut off and isolated from friends an school and activities will make them feel low and miserable without the illness too.
Oh, and a nice touch is the fcat that the pain he has been feeling (that keeps him awake and crying at night) isn’t treatable with painkillers – it’s akin to an amputees pain in a missing limb. So no help to be given for my sad boy in the miserable depths of the night.
So, we’re digging in for the long haul – No.1 was quite depressed at no magic fix, but really rather relieved the consultant didn’t tell him he was faking.