levels up and down
5/2/00 3:15 PM
We just got back from my son's endo appt and I am just so disappointed. He is almost two. For the first 15 months his levels were very good. Then they shot up, twice. We increased his dose each time and then his levels were "undectable" and he appeared to be overmedicated. We switched him to Cortef pills and decreased his dose a bit. I was so sure that this would fix everything and we would get him back in line. Well, his last draw still shows oversuppression and his growth has slowed way too much. His dr. said to decrease his dose again but I am getting nervous. I feel like we are on this rollercoaster of increasing and decreasing. Looking at his mg/m2, he has gone from 14mg/m2 (April 99) all the way up to 21 mg/m2 (Dec 99) and now back down to 15 1/2 mg/m2. I guess I am just looking for experiences from you guys. Do you think it is normal to go up and down like this? His dr. has been waiting about 4 weeks after a med change to check his levels. Is that too long? too short? Would you follow the dr. or would you argue for something different? He is scheduled to have his levels checked again in 3-4 weeks. The draws are so awful for him. I am getting to the point where I just don't want to put him through it. I am just feeling so worn down by all this. Any ideas? Thanks in advance. PS A BIG THANK YOU to all who passed along info about defective Cortef liquid. Considering how much liquid he was on, and still he had two high levels, I am very happy we have switched him to pills now.
Chris D
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