Ehlers Danlos

[LittleTalia]

I have Ehlers Danlos Syndrome. A number of people in my family over several generations have also had similar almost identical traits but this was before EDS was really recognised.

I really worry that my little boy will have EDS as well. We have a pediatrician until he's one or two after being in NICU for two months but she doesn't think there will be any sign of EDS until he's about 7.

I am a first time mum and I wondered how flexible babies are meant to be I know we were told he's meant to be bendy. But how bendy is too bendy?

Thanks for reading x

Sorry I can't answer you questions, but just seen you post and wanted to reply.
I have eds hypermobility type and so does my daughter (now aged 15). Although both her and my son are very bendy, my son has no other symptoms (aged 13), and it has only become an issue for my daughter since puberty.

Be reassured though that every parent worries about their children, you just have to try and enjoy them now are tackle each hurdle as it comes, if it comes.
I do agree though that all babies are pretty bendy. Try not to worry, but much easier said than done. I know I'm a terrible at that.

Also you may get more replies posting in general health as lots of people seem to look there. Hope this helps.

We are currently awaiting an official diagnoses for my DD she is 2, she is very bendy in all joints, speech affected too and is in pain. Physio and orthotist think (like us) that she has it. Older DD has it too.

It's taken a while to get medics to listen to our concerns but we are getting there. Please listen to your gut instinct.