Question???
Jun. 4th, 2005   3:25am
I have a SWCAH 3 year old. We were seeing an endo in Atlanta and I was not happy with this group at all. I was constantly being told that I shouldn’t worry about certain things. When we first found out that Cameron had this condition, I really wanted to find out all that I could so that I would know what to do in case of adrenal crisis. Around that time, I actually had one of the doctors tell me that I would understand a lot of the medical terms and that I should just give Cameron the medicine that they prescribed at the given times. I assumed that this was a crack at my age at the time (21)  which made me angry. Everytime we would go for our doctor’s visit they were constantly telling me that he was in the 5th percentile for his age and that his levels were off but, they would never adjust his medicine. I found out about an endo that was somewhat closer to my home town that I had heard a lot of good things about. The doctor’s in Atlanta were so busy all of the time with so many clients that calling them after hours and getting one of the 3 doctor’s there was impossible. Now we see a different doctor and Cameron has jumped to the 55th percentile. He explains things a lot better too. But, every once in a while Cameron will get sick and start vomiting. I usually just try to help him keep his meds down and give him gatorade as much as possible. ( Which is what the first doctor told me to do.) Sometimes I go ahead and double his meds just because that is the first thing that the doctor says if I call. But, when he is sick it seems to last only 24 hours or so. After the meds and the gatorade and him sleeping all day. He is better the next day. Is this normal or does it sound like a virus? Also, I have no idea what a child going into adrenal crisis consists of. When Cameron was a baby, we were in and out of the hospital but we haven’t had to go in almost 2 years. The only way they tell me to come in is when I can’t controll it with meds or gatorade. Is that adrenal crisis? What is the pupose of the gatorade? Is it just for electrolytes and dehydration? Are there some SWCAH conditions that are worse than others? Cameron’s dose is 8am- 1.5 Cortef and .5 Florinef  2pm- 1 Cortef  8pm- 1.5 Cortef and .5 Florinef. Is this a normal dose for a 3 year old? I’m really frustrated because I feel like I know enough only to get by and nothing more. I appreciate any feedback and thanks Danny for suggesting this site.
Jennifer
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