I am not sure about the red mouth and tougue problem.  Maybe that is normal for children and you are worrying about nothing.  One thing that I know is that not enough cortisol or Hydorcortisol can cause stomach and loose bowels and that most doctors in the United States prescribe cortisol (cortef) or hydrocortisol three times a day for salt wasting children.  Some doctors do prescribe it twice a day for the non-salt wasting form.  The doctor need to prescribe enough cortef (hydrocortisol) based on the blood tests for 17-OHP.  Does the doctor test the salvia and urine and blood for the 17-OHP? I live in Germany now and the doctors here are great. If you need your doctor to call my doctor - let me know. The doctor can speak in English.  Or have you doctor call the United States - Dr. Debra Merke in Washington DC.  She is GREAT!!!

Do you have solu-cortef or hydrocortisol in supportatory form? If the child vomits... wait 30 minutes and double the cortef orally.  You can not overdose from hydrocortisol or cortef but not enough can cause death.  If vomits twice or repeatly you must give 100 mg hydocortisol in the vein (injection or IV) or supportory  to prevent adrenal shock.  Same thing with loose bowels. One time there was a post of a mother = her three year died from loose bowels (stomach flu - no fever - just diahrea).  Because of the infection on the stomach/bowel and not enough cortisol or hydrocortisol - the blood pressure dropped and he died of adrenal shock. 

 This is very serious for the CAH child -not enough cortisol will cause the blood pressure to drop; sugar and salts are too low and the sugars/salts blood to the brain - will be too low - brain damage and death - heart will stop.  They can die from an infection or stomach virsus.  Normal people make 4 to 10 times more cortisol or hydrocortisol for illness but the CAH child can not make more and will die.  If the child has a fever - they can die without more cortisol or hydrocortisol.  You must increase the cortisol or hydrocortisol for fever or illness.

The symptoms of not enough cortisol are as follows:

Dizzy, light headed; rag like (listless); sleepy; dark circles under the eyes; weight lost; vomiting, back ache; eyes are fixed; low blood pressure; coma - then death.

Not enough cortisol is a slow ... and gradual thing but if the is not getting enough and then is ill - it will be FATAL if you do not INCREASE the cortef (hydrocortisol) immediately for the illness.

Do you understand?  email me - robertapreston@t-online.de 

Go to the CARES web page  http://www.caresfoundation.org/  CARES is a non-profit organization established to help parents and doctors understand CAH. You can call the phone numbers or email CARES.

and read the adrenal crisis information. 

Flu season is very fatal for the CAH child.  Let me know if you need my help in any way.