Hi Linzoid, our ds problems were only picked up on recently but it dates back to his 3 year check.
At outr surgery we have a special child health GP who comes in to do the3 year checks. When he saw ds the first time he wasn't happy with him running and the facthe had poor balance and couldn't keep up with other children. At that point the tiredness wasn't so apparent. So as he 'failed' the check we had another booked for when he turned 4, last November.
At the check the GP was still concerned and more so when we reported to him how tired ds was, and that he always wanted to watch and not actually play. He then manipulated his limbs, and said he had low body/muscle tone and would need to see an occuptional threapist before he starts school in September.
Well we still have not heard from the hospital for an appointment, and we are now more concerned than before and over the past couple of months he appears to be getting more and more tired, but not sleeping anymore than before, and I think the best word to describe what he is like, is weary. It's really sad, its like he has lots his sparkle. But we have a GPs appoinment for this coming Monday, and I've decided that this is it, I've got to push them into looking more closely, if not I'll just get fobbed off again.
Sorry Linzoid, I've waffled a bit but thats how we found out. I've also searched online about and all you seem to get info about it is to do with having CP, and ds does not. Sorry I can't be of more help, but I hope you get more than we have so far.