hi Lesley,
Hot feet ,hot body, hot head, hot everything.We've had the works. Pre Dore it was all of the above.He would be sweating,puffing and panting after a few minutes of running /exercise/swimming etc etc . He has always had and still does have hot feet and pain in his feet especially underneath and up to the ankles. His skin and joints are hypersensitive so any knocks hurt a lot more than they normally would. He has never worn jumpers and will wear shorts and short sleeves at every turn even in the depth of winter. (i have to put my foot down on this )
The Doctor told us to ' play it down ' priceless eh ? anyway we are 10 months post Dore and even though he still has pain in feet etc etc and the heat thing is still there it is not as bad and he can cope better for longer periods of time . I don't know if it will work for Simon but Acupuncture did help a lot and reflexology too.
It can be expensive but did help b a lot and we carried on for a while. It's a shame because he won't go back because of the needles and I can't force him, even though it relieved a lot of pain the needles gave him pain too.!! Can't win sometimes.
I still massage his feet using reflexology and it helps. A good book ...Reflexology for Children by Kevin and Barbara Kunz is one I use and B is at a stage where he can bear his feet being touched long enough for him to feel the benefit.
Hope it helps