Wouldn’t you know that I would have to chime in? (there’s that roberta again) Well you asked for my 2 cents so anyway - here’s what I think since you asked.  I think that the above thread from Danny is confusing.  Too much and too little hydrocortisone or cortef can cause headaches - yeah but why?

Does she have salt wasting CAH? Is she taking florinef?  How are her blood levels - 17-OHP, plasma renin? If the cortef and florinef are not working  or too much or too little - yes there are affects of too little- dizzy and headaches!! I wouldn’t rule that possiblity out.  Was she diagnosised right? And being managed right?

Too much the symptoms USUALLY are (some or usually all symptoms - maybe one or two or so)

weight gain,

blurred vision,

 too much body hair,

stunted growth;

can’t sleep,

dark stools - black tar like stools,

the 17-OHP is too low (which is a tricky thing to gauge because the doctors do not all agree a what levels are just right),

 headaches - maybe but probably not?? not sure but maybe??   

 Not enough -

unusual tiredness and weakness;

dizzy - most likely headaches for sure!!;

 nausea, vomiting, diarrhea, loss of appetite, stomache ache, weight loss,

 the child is growing too tall but ends up as a short adult because the bones fuse too early;

darken skin,

thinning hair, 

craving for salt - plama renin blood level is too high or too low;

 

I would think that most danagerous would be not enough cortisol (cortef or hydrocortisone) and florinef to regulate the blood pressure and blood chemistry.   

Remember if is she is ill - it can be an emergency. Low grade fever - triple the cortef immediately (don’t wait until the next dose).  Give tylenol or motrin every 4 to 6 hours as prescribed.  Give the cortef every six hours for a fever. Continue to increase for 24 to 48 hours during the illness and then taper off and go back to the regular schedule.  High fever can cause an adrenal crisis and death.  Give the solu-cortef and take her to the hospital ER for IVs.  Same thing for repeated vomiting and diahrea (more than two times). Don’t just let her sleep with medications and fluids while ill.  horray !! you have the emergency letter and solucortef!!!!

 AGAIN - What kind of CAH does she have? Was she diagnosised right? Did you have genetic DNA blood tests done? Are you giving the medications on schedule?  Do you have a good pediatric endo that specializes in CAH. How many patients with CAH? How do the the other patients doing under that doctor’s care (ask the doctor to have the other patients parents call you - you want to network with them).

Contact CARES - it is a non-profit support group devoted only to CAH.
CARES Foundation, Inc.
P.O. Box 264
Short Hills, NJ 07078

Kelly R. Leight, Executive Director
1-973-912-3895 (in New Jersey)
1-866-227-3737 (toll free out-of-state)

www.caresfoundation.org

Consider taking her to the National Institute of Health for further studies (and MIR or brain scan) if they have an opening for her.  Check with ear, nose, throat specialist, and eye doctor. But DON’T treat the symptoms. Find out the cause. It could be CAH reated. Like blurred vision because of too much cortef and you just give her eye glasses.  If CAH is not managed right - there can be inferitity, growth problems, adrenal crisis and even death.  

Is it unrelated to CAH? Believe it or not - it could be unrelated! Like Janet said in her thread or message - maybe it is something else besides CAH. 

Or is it psychological or suggestive- did some one ask her how she feels every 2 minutes - and asked her "does your head hurt" Are you hungry? Are you thristy? - well that could make your head hurt and very hungry and thristy? (not to mention -drive you and her both nuts!!).  I wouldn’t over medicate either! Only give the extra cortef for physcial stress - fever, vomiting, diahrea.  You can just give extra cortef for a headache without knowing what is causing it.  I knew one very young mother (she was only 15 years old - one of my older daughter’s friend) - she gave tylenol to her toddler three or four times a day - every day because the kid sweating while sleeping. Hello- sweating while sleeping is normal for small kids and babies because they can’t regulate their body temperature as well as adults yet.  Well then the kid had liver problems and seizures before she stopped (she had done if for 4 or 5 years - and she thought it would make him sleep better). Don’t self administer the drugs!! Please!! Moral of that story! Use common sense!! 

Bottom line - Congrats on the adoption and find a wonderful CAH child. CAH kids are great. They are very smart (of course!!).  And they are just normal kids!! Take extra special care of her!! Let us grow up as a normal kid - just nag - are you hungry, thirty, head hurt, but very cautious with illness or serious injury (like a very tramatic injury)!! Be cautious with daycare and school - don’t let her on a bus or car with solu-cortef - and emergency letter. What is there was an accident? Carry the solu-cortef in your purse!! Have several virals of it on hand. One for the school, one for your purse, one for the house.((((((((((((((HUGS)))))))))))))))))))))))))))