Re: timing of blood levels and meds and fantasies
3/12/00 11:45 PM
Well, There is not a single right answer to these questions. There are so many different variations and degrees of how CAH presents itself in our kids. I think by sharing what everyone does.... what works for YOU allows us to see options for US without hard set rules. Brayden's schedule of meds was always casual. Morning, afternoon, night. No exact time stated. His blood draws were always after his appt; whatever time that happened to be. Brayden has also never had to be hospitalized or given the solu-cortef injection. Yet Brayden is indeed a classic CAH w/ salt wasting. How is that? How did we escape what others have not? By all accounts from what I have read from others we should be off the charts and in the hospital. What is going on? I have this fantasy.... that one day the DR's are going to say " Oh wow we have made a mistake. Your son does not have CAH." But they don't. Instead they tell me how this 3 year old has a bone age of a 4 1/2 yr old. They talk about renin levels and 17 progesterone levels. They want to do X-Rays when there have been no broken bones. They look at his penis and feel his abdomen. All reminders that YES it is all true, My son does have CAH. But yet he doesnt fit the mold. Because there is no mold. Another good reason to stay right on top of things with the levels and sizes and everything else that we are constantly checking and re-checking. Just remember to breath. Susan
braydensmom
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