Connective tissue disorder in a two year old

[BlueSprout]

Hi everyone
my little two nearly three year old girl is being investigated for various health issues currently and the geneticist confirmed today she definitely has a connective tissue disorder. She’s very thin, had an uninvestigated heart murmur, she stands like an s shape, her feet hurt, she struggles to talk, and she’s extremely flexible. She was a floppy baby and didn’t move in my tummy while pregnant but was always told it was fine. There is autism and adhd like behaviour too but focussing on the physical side, I wondered if anyone would share insight into how to manage this health condition? I want to set her up for a healthy life as far as possible and wondered what others have done?
if you do respond to my post, I appreciate it so much thank you xxxx

Wgen will you know which specific disorder?

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Focus on her symptoms OT and physio
SLT
Asessment for a EHCP

OP, once you have a diagnosis then the path will be much clearer. You'll find out more about the condition, what treatments there are, what groups you can join. Then you'll be able to ask all the right questions and get support.
Personally I think don't google about the different conditions, until you have a definite diagnosis. It could make you more worried than you need to be and I think would make you anxious.

Wishing you well, OP. Do you have a date when test results come back/a follow up with the consultant?