Hi,
You must have alot on your plate at the moment. I have a 2 3/4 year old daughter with SW CAH and a 5 year old son with SW CAH aswell.
You will find the doses will vary depending on a few things. In the beginning they will not only be on a replacement dose but also a 'get back on track' dose. It can take a short time or a very long time before varying doses are giving you the levels that are within the goal range. Also hormonal and growth changes will determine doses as does a bad run of illness.
I can't help you with doses based on using the liquid because I have used tablets since both children were babies. I was given the tablets and just crushed them up and mixed with breastmilk. It will depend on when your daughter was diagnosed but my son was on extremely large amounts of hydrocortisone as he was diagnosed at 4 weeks (extremely ill) so he was on 6 mg five times a day but now on 2 mg three times a day. My daughter was on 4 mg fives times a day but by the age of 1 she was on 2 mg three times a day and has stayed on that since.
As for surgery, I can understand the stress of your child having surgery. I'm happy to talk to you about my daughter's experience or put you in touch with a family who has had surgery by the same surgeon as you are seing. I'm the President of the CAH Support Grp and there have been quite a few families have surgery around Australia this year. So depending on where you are going it may be more helpful to talk to someone else about the process.
Feel free to email me directly on lindapowell@optusnet.com.au about surgery or if you want me to give you contact details for someone in your area.
Kind regards
Linda
