Hi Laura
Sounds like your DD is making great progress with the physio. It's hard to watch them struggle isn't it? I'm glad we've actually got some answers now. I took DS to the GP recently and he made me feel so stupid for even being worried, said his legs looked completely fine but said I could have a referral to the paed 'if I really wanted to'. Thankfully we moved house and started seeing a new MCHN and she's the one who commented that his legs didn't look right and strongly recommended seeing the paed and a physio.

DS is coping fine, apart from the fact he is no longer allowed to sit with his knees tucked under which is frustrating for him. We are constantly following him around correcting it. Actually he just chucked a massive tanty because I won't let him do it! The physio suggested putting sweatbands around his knees to make it harder for him to sit like that, which I think I might have to do. The only time his muscle weakness is really obvious is when he tries to walk alone, it's like watching a baby horse. He doesn't seem to let it get him down though which is good.

Rickets is caused by vitamin D deficiency and causes the bones to soften and deform (like bowed legs) and Marfan's is a genetic disorder of the connective tissue. MIL told me that BIL was diagnosed with hypotonia at 2 and he has Marfan's so could be a connection there. Although one of the most tell tale signs of Marfan's is height (BIL is 6'8 and was always off the charts for length as a baby) and DS is tiny. Hopefully the paed can get to the bottom of it.