Re: New baby question
2/17/00 4:04 PM
hi michelle, i'm very new to the board also..like you i feel this board is a god send too. my daughter is just 3 years old(turned 3 jan 1)..she was diagnosed at 5 months. believe me, i had no idea what the doctors were talking about. mostly about my husband and i being carriers. the 1st endo we saw briefly explained the condition(by the way, she is a mild non classic and has no genitalia deformities except a slightly enlarged clitoris which is how they found it) as "her body can not make enough cortisol, but don't worry she'll live a normal life. just make sure she takes her medicine or at 3yrs old she might start menstrating." well of course i was shocked and completly freaked out..after researching it on my own i learned a BIT more. not enough though.. we moved and started seeing another endo who explained it more into depth, but i still had questions that were unanswered. i love my current endo but i think the problem is with not the lack of information but with experiences and certain info.pertinent to it. for example, i always new to double or triple her dose when sick with fever over 101 or vomiting and not keeping dose down , or if she got a serious physical injury. okay, so now for almost 21/2 years and every 3-4 weeks of bloodwork i think i've got this thing down. WRONG!!! last month she got a virus , didn't have but 101. (dbld dose..) then she started vomitting and was not able to hold down the cortef. i do not feel comfortable in giving her a shot(i know for my child's sake i have to overcome this). i called her pediatrician and told them i would need to come in to get her a shot..they scheduled an appt for about 4 hours later. i called her endo ,( who is over an hour away, so we go to her reg. ped) , for the dosage to be given in the shot and told her the time of appt. she sternly (but sweet, she is an angel) told me i needed to take alexis in right away.............i take her in and come to find with some questions that if i had waited my daughter would have been at the risk for HEART FAILURE or a SEIZURE!!!! i couldn't believe that i did not know this. talk about the guilt of being uneducated in such an imp. matter. the point i'm trying to make (without rambling much further..sorry) is that we as parents have got to research everything ...most pediatricians or ER drs don't know much about cah and you might find as i have on several occassions that they are almost excited to see a cah child( guinea pig/something only read about in medical bks). god forbid an endo is not near and they make the wrong decision. and again i am as THANKFUL as you to have found this board and all of the beautiful people who share their experiences and education.. sorry it was so long..... alexis'mom.. by the way as far as i know it's okay if your child hasn't vommitted within 1 1/2 hrs.. but check with her endo because every case is different.
alexis'mom
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