Dear Phyllis,   Is this your first grandchild from your children???  If I can reassure you that with good monitoring your granddaughter will lead and very full life.  I have two Children with salt losing CAH our soon is 28 and our daughter is 26. I am the co-ordinator of a CAH Support Group in Australia.   We have produced a booklet written by Assoc Professor Garry Warne a Endocrinologist at the Royal Children's Hospital call "your child with congenital adrenal hyperplasia"  I am sure that the Endocrinologist in your country may have a  booklet similar to ours. If not, the cost of the booklet is $15.00+ $3.00 postage= $18.00 US. your granddaughter will be on cortisone and if a salt loser florinef ( in your country the medication may be call something else)  but with close monitoring her life should be " normal" . The down side is that in those early years the childs parents as well as your self mush be careful that if the baby gets any infection she may have an adrenal crisis. Some babies in those early years seem to get infections. It is advisable for the parents be in contact with their local doctor so if the baby is unwell they can take it to the doctors quick, so the doctor can give the baby a hydrocortisone injection and maybe she may have be admitted to hospital for a short time.   If you would like any further information I would only be to happy to help you understand CAH.  Firstly you must talk to the Endocrinologist, along with your grand daughter's  parents

Kind Regards
Dot Gronn
Co-ordinator
CAH Support Group
AUSTRALIA

n.hession@... wrote:

 

My grandchild was just diagnosed with CAH .She is 1 week old and I really need to talk to someone with a child who has this so i can understand it. Please help me to find someone to talk to.tks. Phyllis

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