Hi Sarah, I also live in Perth. I have two children both with SWCAH. L'tecia is 7 and Shane is 3. We found out L'tecia had CAH when she was born. We were transferred to PMH the day after she was born as Doctors at Osborne Park Hospital were not sure what to make of her! They could not confirm whether she was a girl or a boy. We were all fairly certain she was a girl but they could not be 100% sure. It was all a bit daunting but once I met Dr Byrne and he explained things I felt a bit better. Dr Byrne gave us a book that was extremely helpful in understanding CAH. It is called "Your Child With Congenital Adrenal Hyperplasia" and it is written by GL Warne. You can purchase a copy of this book from the Australian CAH Support Group. Alternatively ask your endocrinologist for a copy of the book, he/she may be able to supply you with one. It is very helpful as it is not written in medical jargon but easy everyday language! It's also great for showing to family and friends to help them understand a bit better about CAH.
CAH is a very easily managed condition. I know it probably seems a bit daunting to you right now but please don't worry. Make sure you have a good endocrinologist who doesn't mind how many questions you ask!!! Who is your endocrinologist??? We have had our share of Adrenal Crisis with our daughter L'tecia but you do manage to get through them. When my kids are unwell I always make sure I keep an extra close eye on them. It is always better to be overcautious and take the precautions to keep them well. Even if I go to PMH and he/she turns out to be not so sick after all and they send us home, at least I know they are ok. When L'tecia was little we had a couple of these trips to PMH when I thought she was quite unwell and they sent us home. Now I am so much better at knowing what to do. I can recognise the signs of an adrenal crisis now and I know when to go to hospital and when I can cope ok at home. Don't worry you will soon learn this too.
Another thing I always do is to keep at home a couple of vials of the injectable form of Hydrocortisone and all the needles and syringes etc needed to inject in an emergency. It is called solu cortef. I take this with us when we go away down south as I don't know how well aquainted the hospitals down there are with CAH. I don't take it everywhere we go because in Perth we are never very far away from PMH. You should ask your endocrinologist about this.
I am in Bayswater. Where abouts in Perth are you???
Remember there are always people here on the board to answer any questions you have!
Good Luck
Jane
