Welcome! There’s usually lot’s of info & help from people on here, and Danny has a lot of great links for more info.

I have a 17 1/2 year old son with SWCAH (17Hydrox. Deff.), so I have no advice for the female issues except to wish you all the best when it comes to that...stick with your heart and gut feelings.

Watch out for the potassium...too high can cause heart problems & heart attack. For my SWCAH son it always seemed to go hand-in-hand with his sodium level, when one went up the other went down.

I think Danny has a link that will take you to "signs of adrenal crisis". We all agree when it comes to making a decision whether our child is in adrenal crisis or not---go with your gut, parents can tell best when something is wrong with their child, and err on the side of caution. Even if this is your first child...you’ll know when something is wrong.

As for calling the paramedics--Good Call! Never doubt yourselves! Don’t let them or the Emergency Room people belittle or degrade you for being cautious. As soon as you can you might want to educate your local paramedics & get them to keep an emergency injection kit on board for her. 

My SWCAH son was my first child, I was 23 years old and had a hard time at first getting through to the doctors that he was VOMITING not just ’wet burps’, they kept insisting that I was over-reacting. That was until he lost too much weight and they had to admit him into the hospital. Then finally one of the residents asked what I saw happening and actually listened to me and recognized the symptoms being that of SWCAH, and thus at 7weeks old (and after much pleading from this resident to the State licensed doctor) the tests were finally ordered to check for SWCAH.

My son’s Endo told me a long time ago that each CAH patient is different, with different levels of deficiency, and that we had to watch the whole picture (height, weight & blood levels) to see if we were getting his dosage just right.

17 years ago his condition was described to me that his body made cortisol, but not enough to survive...and in times of stress or illness his body could not make the extra that was needed, so he would then have to take extra of his meds.

I’ve never dealt with either NIH or Johns Hopkins, but I have read more of NIH on this message board. Also, in my opinion it is important to consider maximum height possibilities even at this age. Once they get behind it’s harder for them to catch up.

Good Luck and check here on the board often!