craniosyntosis- anyone able to help?

[lourobert]

My ds was born with a odd shaped head but i put it down to the birth and being delivered with ventouse. After a rerefal being made by my health visitor i am told that ds may have craniosyntosis and i am awaiting xray results to confirm this. I have researched this on the internet but Im curious to know if anyone has any first hand experience of craniosyntosis and the treatment for this.

Lourobert.. have only just seen this.. please email mumstuks AT hotmail DOT co DOT UK.

Our son has sagital craniosyntosis, and we've been fobbed off that it was nothing his hair would cover it over, we've done the Grt Ormond Street thing (very helpful but not for us) and now we're on cranial osteopathy.

Would love to talk, as I've never met another parent with a child who has this! Hope you can email me!

oops, that was mumatuks @ hotmail . co .uk

mumatuks- i have emailed you so i look forward to hearing from you sometime soon. regards.