22 month old with hypermobility syndrome and GDD, need a rant! East Sussex

[Browniesmum]

Hi my 22 month old son has been dx with hypermobility syndrome, low tone and has GDD. He is seeing a speech therapist as has no proper words yet a physio as he is no where near walking yet. Finding it really hard to find others in the same boat as me. Would love to have a chat with someone in the local area? Am in East Sussex

I live in West Sussex . My son has gdd and is hypermobile .

Rant away! No experience to share just wanted to say hello and welcome

Hi bishboschone, I moved from Crawley a year ago and don't really know anyone here so am back and forth to West Sussex all the time. How old is your son? What degree off GDD and HS has he got? Do you feel alone too like no1 really understands? Is there an underling cause for your sons problems? My son has had mri and plenty of tests but no firm diagnosis! Sorry for all the questions! Driving myself crazy here! Handy woman... Thank you for the welcome... Am very new to forums and certainly don't really know the lingo...I'm sure il catch on soon enough.

He is 2.6 and walks with a walker , no spec has such . Other than that he is a normal 2 year old .. Have you seen a genticist ?

I'll pm you .

Hi all, my ds is now 4 yrs old has GDD, hypermobility and no speech (among other issues) and he didn't walk until he was 2.6 and is still very wobbly. I've never met another child like him tbh but sounds like your dc is quite similar! He's had numerous tests done but no genetic or chromosomal abnormalalities have been found. He seems to be a bit of a mystery so it's good to hear from others in a similar situation at last! Can I ask if anyone's dc had any birth defects? Only because my dc had quite a major life threatening one so it would be interesting to know if they have that in common to!

I'm not entirely sure what a birth defect consists of but on the whole my son looked normal. He has ptosis of his eye which is an indicator of genetic problems but it's not actually that obvious . Do you know about swan ? There are actually loads of us with no answers .

Sorry no, I don't think i know about swan

It's stands for syndromes without a name . There is a Facebook page . Or feel free to pm me if you want to chat .

Thank you, i shall look into it

My son has hypermobility and is speech delayed. He's 2.3 and has around 15 - 20 words. Apparently this can be linked to hypermobility due to the jaw ligaments and muscles being relaxed. He was also born with a heart defect. He's great tho ( and On a bad day looks like an bad actor Doing drunk impression

have pm-ed you