Hi Kim,

Chelea is 9 also, and has NCAH.  We went through exactly what you are describing and it kept getting worse. Our endo also said he didn’t think it was related to CAH....newsflash...here we are one diagnosis later. Chelsea is also HYPOGLYCEMIC.....something I am finding is quite common among CAH’ers!  The headaches and vomiting were related to blood sugar levels.  Have your daughter tested.  If it is hypoglycemia, you don’t want to give sugar, you want to give protein and the headache disappears.  If it is another form of sugar level reaction, you can give sugar and the headache and vomiting will disappear.  This appeared in Chelsea even before we had a final diagnosis of NCAH... We thought she was suffering from migraines, as I have those. But that is not the case, and it took us almost 4 YEARS to get a correct diagnosis! Please don’t let that happen to you. When she was diagnosed with NCAH we thought..oh that must be what’s wrong...but it wasn’t...then we thought, like you did, oh her meds must be off, she must be getting near a crisis or something, but that wasn’t it either....now we are here, in our first summer with the dual diagnosis, and NO MORE HEADACHES AND VOMITING!  The diet is a pain in the butt, and it is hard to tell a 9 year old that no, she can’t have sugar whenever she wants it. It is well worth it though! Chelsea is swimming on two competitive swim teams this summer and has not had one episode! It has honestly been almost 2 months since I even checked this board because she is doing so well. It is a simple test that requires your daughter to have blood drawn, then to drink a glucose drink and have blood drawn again an hour or so later.  The test is very conclusive. If it is hypoglycemia it is controlled with diet.  Good luck, and I hope you have as much success as we did.  Having a child with CAH that has the symptoms you describe is VERY scary, I know.  An adrenal crisis and a hypoglycemic episode look very similar!!!!! If your daughter does turn out to have the same diagnosis as Chelsea, be sure to put hypoglycemic on her medic alert bracelet, because the symptoms are so similar that even paramedics will not know the difference.  The child in an emergency situation should be treated for both and adrenal crisis and a low sugar episode, just to be safe.

Good luck again,