Re: The mystery - HELP!
9/22/00 4:58 PM
Chris, I've been wondering how your son was doing because my son Marcus is now in (almost) the same boat. He is 13 months old, weighs 19 1/2 lbs and is 28 1/2 inches. We just went to the endo 2 weeks ago and my son is also still oversuppressed since we switched from the liquid cortef to the tablets. Since we switched in May his dose has gone from 6.25 mg/day to 3.75 mg/day which for him I believe is about 9 mg/m2/day. This is the lowest dose he has every been on. He has also had poor linear growth which is probably due to being oversuppressed most of his life. (At least your son is growing well--that is comforting). So while my son's dosage is not as low as your son's (in terms of mg/m2) it is getting there! I completely understand why you are so nervous about it. It is obvious that the liquid cortef was pure garbage! According to my endo we are "starting from scratch" now to figure out the right dosage. I am sorry that I haven't shed any light on the "mystery". To make a long post even longer I have to share my horrible endo visit story. At Marcus's last endo visit we had the worst nurse in the history of endocrinology. She took us back to "measuring room" and she didn't know how to use the measuring table so she measured him 7 cm too long. Then she forgot to take his blood pressure (which I didn't notice until later). Then after we went back to the exam room she asked what medications he was on. I told her cortef and florinef and she said "Oh, we don't need to put down flouride" (I set her straight). So when the endo came in (my usual doctor unfortunately was out of town) the first thing he mentioned was that Marcus' growth had gone from < 5th percentile to the 50th. I knew that wasn't right because he had just been measured the week before at my pediatrician's office. So we had to go remeasure him. Of course, in the meantime the doctor went off to check another patient. He finally came back and said told me he wanted to reduce his florinef because his blood pressure was high. I told him that was interesting because the nurse didn't take his blood pressure. So he left the room and came back and said "She said she took it" and sure enough there in the chart she had written 111/something. So at this point I was a little annoyed and told the doctor that I was pretty sure I would remember if she took his blood pressure. I finally convinced him that she was wrong and he had her "re-take" it. It was 77/53. By the time I left I was in a terrible mood! I thought it was pretty bad to get the completely wrong results for 2 of the most important aspects of the visit. Sorry to bore you all with this story, but there is no one else I can tell it to who can truly appreciate it!
Cindy
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