Hi, I live in Adelaide. I am 34, I have 2 SWCAH children - 14yr and 10yr old girls. We see Jenny Couper and Jenny Harrington and Womens and Childrens Hospital. Both my girls are doing great, they dont get sick as often as they did when they where babies. We do have the occasions though when they wake up a bit flat or a bit unwell. My 14yr old recently had a bit of a case of gastro (dont u hate gastro), but we handled that. She did need a cortisone injection, which i to her gave myself, and she came good. Gastro is scary and im glad that they havnt had it in the last few years, so that has been good. My eldest takes 4mg tablets of hydrocortisone -2.5 in morn and 5 at night, with 100 micrograms of fludrocortisone which she takes half morn and night. My 10 yr old takes 2 hydros in morn and 3 at night with half fludro morn and night. They both had exploritory surgery 3 months ago and i was told my 10yr old will need further surgery when she hits puberty, which excuse my language really pisses me off. It is hard enough being a teenager, but to have to go through that aswell sucks. My 14 yr old is fine, has had her periods for about nearly 2 yrs all is going well with that. May have to have her medication increased(hydro) her last finger pricks ( which i do myself) the test results where a bit low. Hard time puberty, getting medication levels just right. My 10 yr old is absolutly terrified of needles so blood test dont happen too often, which is hard.
I would love to talk to other moms out there or anyone with CAH. It is hard to always have that worry in the back of your mind, thinking is this normal, or how will this effect their teenage years. Sometimes I think it just isnt fair my children have to go through this.
Id really love to speak to any one who thinks their advice may help me.
Thankyou
Kelly
