Re: Re: Re: 17 OHP levels
6/11/00 11:45 AM
Thanks for responding so quickly. I have just spoken with my daughter and she actually spoke with one of the drs. last evening and listen to this.....the drs. have agreed to meet HALF-WAY!!!!!My GOD, this is our son and grandson and the drs. agree to meet HALF-WAY, give me a break. the meds will now be adjusted, based on their compromise and blood is to be taken in one month, rather than the normal 3 months so the drs. can evaluate the results and but heads again. We've never encountered anything like this is 7 years. I'm not as well versed on cah as you, but don't alot of circumstances cause levels to be off somewhat when blood is taken, ie, time of day, meds recently taken, etc. His levels were up very high , meds changed about a year ago, and now they are not in agreement one says 32-34 is too low, the other saying that level is fine. What is normal? Are the levels different for each child? He is a salt-waster, takes sodium,flournef and cortef at 7:30 A.M. and all but the flournef again before going to bed at night. We're in Richmond, Va. and are on our 3rd ped endo (the first two were no good at treating cah, actually had no patients with it), so we chose the newest dr. based on his experience with cah, now we don't know how experienced he really is, and we feel if we question his credentials, experience, cases, WITH SUCCESS, he will tell us to take a flying leap out the closest door. We don't want to keep changing meds, unless of course, it is necessary to normal growth, etc. Does the cortef aid in the growth rate? If you know of any drs. close to us, we'd love to be given their names. we can't take a sick child to a local er in the case of an emergency and the drs. look at you like they don't know what in the world you're talking about, and believe me that has happened more than once. We have to have a dr. that know EVERYTHING there is to know about CAH in the area to be in CHARGE of treatment. Thanks for listening to this frustrated Nannie. I look forward to hearing from you again. My e-mail is JFRAN407@aol.com
Nannie
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