k b g sydrome anyone heard of this

[janrose]

my child has just been diagnosed with this anyone any information on this

Welcome. No direct experience, but googled, dont think anyone else has posted about this syndrome but you should find people whose dc have similar issues.

there are lots of posters here with experience of learning disability, plenty whose dc have extremely rare genetic issues, some with dc who have craniofacial issues and maybe a few with skeletal difficulties.

Would suggest you post again, heading it with something like 'rare genetic disorder' or 'rare craniofacial syndrome plus other stuff'

Ds1 has autistic spectrum disorder and ADHD, so no specific advice to give you except for make sure you claim DLA, and ask the hospital abiut their concessionary parking for babies who attend often. You could look at cerebra, contact a family, unique and family fund

thank you for your advice x

Hi janrose I don't know about that syndrome but welcome to the board. my son has learning disabilities and autism and their is a wealth of advice and support here about all sorts!
There was a thread about waiting for genetic testing and diagnosis - will try to find it later

Hi janrose I don't know about that syndrome but welcome to the board. my son has learning disabilities and autism and their is a wealth of advice and support here about all sorts!
There was a thread about waiting for genetic testing and diagnosis - will try to find it later