KayI am the parent of a 13 year old non salt wasting girl. She was not diagnosed until she was 3 yrs old. I often think of how lucky we were that she did not suffer a crisis before she was diagnosed. Very shortly after her initial diagnosis, she suffered her first crisis. I can tell you I have never been so afraid in my life - afraid I would not do "something" right. With the help of her endocrinologist, I administered her emergency injection at home and rushed her to the pediatrician's office (directly across the street from the hospital). We chose to go there because we knew she would be more closely observed and we had the medical facility directly across thee street if needed.
CAH has changed our lives immensely. My husband and I have to give closer consideration to the things our daughter wants to do. Is it too dangerous? How far away will she be? Do we need to be there? (We usually are and probably would be anyway - that's just the kind of parents we are.) School is always an issue. In the beginning of each year I have to be sure that the teachers all understand that our daughter has a medical condition and what special care she may need while in their custody. How much do we discuss? Will they (the school) act quickly if needed?
Another change - teaching a child to be responsible for her medications and for telling someone immediately when things are not right, teaching her to understand what her particular stressors are and how to deal with them. For my child heat is a big problem (as well as the normal stuff - vomitting, diarrhea, injury, surgery). She is "self-monitoring" in PE, meaning she tells the teacher if she needs to stop or perhaps even not participate in a particular activity if she knows it will be hard to handle. Please don't misunderstand this. She does normal kid stuff - she has played soccer, softball, and basketball. Her current sport of choice is horseback riding and she does compete locally. We always weigh the risks of her activities, but allow her to do pretty much what she wants.
My daughter and I are VERY close. I admit I am one of those moms who takes a very active role in their children's life - I don't think I missed a thing my non-CAH son did growing up (he is 10 yrs older), but with my daughter it is different. Not only have I done the room mother, team mother, girl scout leader, etc. stuff, but we talk about EVERYTHING. I have stressed since she could understand that she can tell me anything about what is going on in her life whether or not it is CAH related and I think because I am there through every illness or injury with her she is even closer and shares with me more - a very important thing when your child is 13.
Her CAH has made me think more about the need for screening and treatment for all children for all kinds of disorders. I realize how incredibly lucky we were that nothing happened to her before her diagnosis. I worked toward getting newborn screening in Virginia - canvassing my friends, co-workers, family, etc asking them to call and voice their support for newborn testing, even appearing before the Health and Education Committee of the Virginia General Assembly. I have become more of an advocate for children and hope to continue this even though my own children are 13 and 23 now.
Having said CAH has changed us immensely, let me stress that our family life is as normal as it gets! Of course there are the meds and the doctor visits, but we don't focus our lives on our daughter's CAH. It is an important part, but not the center of it all.
Would I prefer that our daughter did not have CAH? Of course! Would I change anything about her? Not at all. I am sorry that she gets sick and has a harder time getting better. I am sorry that she has to take meds twice a day. I am sorry that we have to be vigilant of a crisis. But, if I could change any of that, would she be the same child? I don't know. All I can say is that I love her with all the love a parent could possibly have. She is a gift from God and I treasure her just the way she is.