Robbi (and others who are interested in an adult CAH story)you wanted to know why I take Dex and you don't. For me personally (I'm 40)I had signs from birth (enlarged clitoris) but since I'm not a saltwaster I never did go into crisis as a child. At age 5 or 6 I started having pubic and underarm hair, as well as B.O. My parents didn't know what they were dealing with so they did nothing. My parents started shaving my underarms for me at age 7 (really embarrasing when none of your other friends are the same) I felt very uncomfortable as a child in a bathing suit because I was SO hairy. Whenever I would get a childhood disease (like chickenpox) I was in bed for several days, just didn't have any stamina and it did scare my mom. I also as a child had a fairly severe reaction to bee stings and my mother would take me to the hospital for an adrenalin shot ( we can all see the humor in that now, can't we.) About the age of 13 I started having really bad headaches every day.I would come home from school and go to bed my head hurt so bad. It was always in the same place, the back of my neck at the base of my skull) Then when it came time to menstruate, I didn't. At age 16 my mother took me to a gp who put me on birth control pills and it started my period. As soon as I finished the 6 months worth that he gave me I never had another period. At age 19 I went back to the doctor again. I lived in a fairly small town so my doc sent me to Seattle to see an endo at The Virginia Mason Clinic. He ran tests and noticed my testosterone was 130 and should have been under 80, my 17-OHP was 1400 (should have been under 300)and my DHEAS was out of whack too. I had been complaining of headaches, anxiety, shakiness, fatigue, couldn't handle stress. I requested his chart notes recently and at the time he noted I had a deeper than normal voice, broad shoulders, I was short (5'2")and with the genital abnormalities (however slight) and I told him of the growth spurt I had when young and the fact that I stopped growing at age 11. He actually questioned if I was a hermaphrodite!!! Can you believe that? Remember, the year was 1978. Anyway, he started me on .5 of Dexamethsone. Within 6 weeks his chart notes state I had my FIRST period not induced by birth control pills. Within 3 months I felt a LOT better. The hair growth was lessening and my facial hair was going away too (mustache and hairs on chin, stomach, chest.)As I got older I didn't like taking the Dex though because it made me gain weight and I had always been about 120, but my weight was 135 or more. I didn't take it regularly and had several episodes that I now know were close to a crisis, where I was so exhausted I didn't even make sense when I talked, and I had to go to bed. When I was 25 I got married and wanted to have a baby. My OBGYN said I needed to take my Dex or I would never get pregnant because I was barely having a period, let alone ovulating. I did what he said and after 2 years did get pregnant. I never was able to conceive again however. After my daughter was about 15 mos old I went to a homeopath that wanted my off of steroids. I thought he knew what he was talking about so I went off of them. The next few years I lost my periods, (big deal, I thought) and noticed I was starting to have anxiety attacks for no reason. When I was diagnosed I don't remember ever being told I absolutely had to stay on my meds. I also don't remember being told to stress dose (but it was written in the chart notes). Well, in 1992 I got divorced and in 1993 remarried. Two days after I got remarried I found myself in an adrenal crisis (incidently I had lost LOTs of weight for no known reason, had a high pulse rate, felt exhausted and had the stress of a new marriage) well I started out with a horrible headache which over 6 hours or so progressed to me being so wiped out I could barely stand and then during the night I went to the bathroom and started throwing up. My husband found me on the floor of the bathroom in the morning and called the doctor and I was hospitalized for 4 days. At the time adrenal crisis had never been mentioned to me and I hadn't seen an endo in a while, so I was (can you believe it) diagnosed as having meningitis. Well, this was repeated 3 years later with another crisis in which I spent 4 days in the hospital, only that time I didn't snap out of it afterward when I went home. I had to take a medical withdrawal from school and couldn't work because I was so weak I couldn't walk from the car in to the school. My mind had short term memory loss (lots of adults with adrenal problems have this and it's called "brain fog") and I had terrible times concentrating and saying a full sentence) Anyway, my gp recommended getting a new endo and I did. I had my 17ohp done and it was 1450. I actually had been on .25 of Dex daily (faithfully) for the last 9 months, but with the stress of school and working and having a 10 yr old, the dosage wasn't enough and that was what sent me into crisis again. So parents, Most of the problems I have had with CAH were from adulthood (although childhood wasn't a picnic either). Recently there was a survey done on the CAHsisters e-mail list and we found that there are LOTs of symptoms that most of us have had that we had NO CLUE were linked to CAH. We just had stuff that defied explanation. Our endo's didn't know either. These days things are better because thanks to these boards I am better educated (Addison's board is wonderful too). I'm not allergic to bee stings anymore (now that I take steroids and have cortisol in my system) I stress dose often too, in fact I'm extra tired tonight (I'm doing student teaching at the moment)and was feeling shaky and had a headache, so I know with those symptoms my cortisol is too low and I need to take some more Dex. (I only took .125 mgs (which is 1/4 of my night dose)and the headache is already starting to go away. I'm sorry to sound so pitty pottish with my earlier post, but I've been through HELL with CAH. Mind you, my life IS good though. I graduate in May at age 40 from college Finally! I had never met, heard about or talked to anyone with CAH until November of this year, but I have gotten an unbelievable education in those few months. (My old endo only had a book to lend me that was copywrited in 1960 on CAH, when I asked him where I could find info.) I had been to the library numerous times and had found nothing. I also know that Ashley (that posted the note some objected to ) had to endure daily shots for CAH when she was a child, so it WASN'T a picnic for her. The anxiety and depression are very real problems for most of the late-onset adults. That seems to be one of the main topics of discussion on the Addison's board too, so it's not just CAH, it's adrenal insufficiency. Granted, for me now on Dex I don't really have any depression (on prednisone I was suicidal)so the meds can make a difference too. I don't dare go off of Dex. I had an ACTH test done last spring and my baseline cortisol was 0.5 (should be somewhere between 6.0 and 15.0) and after stimulation it was 0.8 In other words I produce just about NO cortisol. Between baseline and after stimulation the numbers should rise at least 8.0 points too. Mine raised .03. Pretty bad. Scary too. Yes, I do wear a medical bracelet. My 170hp now is 150 though and my new wonderful endo is thrilled with that. It's probably why I've been feeling so good lately. I still have a lot of anger over not being diagnosed as a child and what it's cost me so that's why I came off as sounding angry in my earlier post. The anger is toward my parents NOT doing anything when something was obviously wrong. I tip my hat to you parents who are on top of things with your children. There's a lot more info out there now too. Thanks for listening Susan A.