22q11 deletion.... is anybody out there?

[daisychainz]

My Ds who is 4 has 22q11 deletion syndrome. I am started this thread really to find any more parents who have a child with the syndrome. I would be really interesting to know how a child adapts to school life, and if there were any problems which i could learn from. Unfortunately i have never met any other children with the syndrome and just wanted to see how other parents cope with every day life, thanks.

hi - my dd has a different chromo disorder but have you heard of Unique? They have lots of members with children with DiGeorge syndrome - they could put you in touch with some folk

There are a couple of people on here as well I think

India Knight's blog was good (her daughter has DiGeorge syndrome) but don't think its updated anymore

Hi my paed thinks my dd might have this but im sure she was tested for it and tests came back clear but he does think she has a genetic disorder.. My dd has various health problems specially upper respiratory problems and low muscle tone, global devolpmental delay etc x

Hiya,have you tried "Max Appeal"? this is a support group for parents of children with di george syndrome,if you google it should come up x