hi...i too need to speak with other parents of cah children. I am very new to the internet and this is my first time on this message board. my mother and sister in law found it for me a few weeks ago when i completly broke down after my 3yr old got sick and we had to take her to the hospital for cotisone shots. my endo was so adiment about me getting to the hospital right awat after a few hours of vomitiing and not keeping her meds down.. i asked her pediatrician why i had to rush in ....he replied by telling me that my sweet little angel could have heart failure or a seizure!!!!! I was shocked and embarressed that i was ignorant to this information Of course i also felt extremely guilty that here i was suppossed to be the person to keep my baby away from harm and protect her, but yet i was unawar of certain "childhood illness" (virus) that could have caused her so much harm..as i am writing to you i am breaking down in tears for i am so alon e in my journey of facts to help keep my baby healthy as possible. my friends and family don't understand... they definitly have empathy , but they either look at it as one extreme or the other..(oh my ggoodness...or oh no big deal) i dont blame them for their emotions or lack of but i can not find support in them. i sometimes even feel as if my husband is in denial of how exreme or how extreme this condition is or could be. thank you for your ear(eyes) i do not have an e-mail address yet .. when i do i would love to give and receive support... god bless you all and all of your precious children