Hello and welcome!
I would trust what Dr H says completely.
I have two children with HMS and I have it too. So here goes to answer your questions from our experience:
- joint pain/subluxations etc
My son started to say he was in pain from 4 yrs onwards but not very much - I suspect that he is in pain but this is what he knows as normal so cannot see that it is pain. As you say, look out for paleness, being grumpy, not wanting to play (preferring tv!), disturbed nights (night time pains are very common). My daughter is more vocal about her pain but maybe she is picking up on what is said around the house. She is more achy as she is more active. The more you do, the more achy you can be - eg if out shopping for 3 hrs or so, I expect to need to chill in the afternoon or the next day. We should "pace" ourselves. GOSH have a fab exercise programme which has helped them to have less pain by strengthening the right muscles - did Dr H offer this? Growth spurts can make them less co-ordinated and more achy (or pale).
My son has subluxations of his thumb/fingers without him realising eg when writing - touch wood, no other subluxations have happened.
- viruses etc
Interesting - sounds like us but I have not read about this. In fact, I spoke to the local physio this week and she said that when your immune system is being challenged by colds, this can make you more achy and less active, asking for the buggy rather than walk. Dr H is used to meeting children who prefer to use the buggy and the exercise programme helps to change this. It is good in some ways he is getting colds before he goes to school as my son had very little colds before he started school, and then caught lots! Has he had chicken pox yet? Many of us here find the scars stay - Dr H likes to look for these as part of his diagnosis - but the scars are whitish (paper like).
My daughter has a normal flow murmur. Many here do have murmurs but it is "mitral valve prolapse" and other valve things which are common. My son has aortic root dilation (dilatation). Search heart at this website. Annual echocardiograms are good to check the valves.
Yes my son was more tired than most. Fatigue is common. One thing to look out for - play - how much does he use his hands and how does he hold the pencil (this may show to others how bendy he is). Listen out for the pitter patter of his feet - when more tired, in pain he may make more sounds.
- being bendy
It is tricky to spot when one's child is bendy esp if you are as we all think that our bendyness is normal! Maybe see if anyone in the family has had subluxations etc.
What a worry that leukaemia was once suggested. I can see why you are asking your questions but please Dr H is fab and I would trust him 100%.