This will be long but not meaning for it to be. I will try to explain the best I can since you are unfamiliar with this mediacl condition
With having SWCAH you cannot produce Cortisol or Aldosterone. The brain senses that the adrenl glands are not functioning properly. To compensate for this problem, the pituitary gland will release more ACTH. High levels of ACTH will cause the adrenal glands to continue to try to make cortisol. This overactivity will cause the adrenal glands to increase excessively in size.
Lack of Aldosterone
(The Florinef pill helps her turn table salt into Aldosterone-body salt)
Aldosterone helps the body maintain a proper balance of salts and fluids. it dose this by causing cells to retain "sodium" and lose "potassium". Without aldosterone, the body will end up doing the opposite, i.e. you will lose too much sodium and retain too much potassium. Sodium helps to keep fluid in your blood vessels. A dificiency in sodium leads to low blood pressure and poor circulation. low sodium levels can lead to seizures. If your body is holding to much potassium it can cause irregular herat beats. Everything metioned above can lead to shock and suddened stop of blood circulation which will result in death.
Lack of Cortisol (Cortef, DEX, or Predisone are all pills that gives the body Cortsol)
Cortisol is essential for maintaining your general health and well-being. It helps your body cope with physical stress, including stress from illness. Without Cortisol, the body can have difficulty coping with infections, surgery, or trauma. This routine situations can also lead to shock or sudden death. Cortisol also helps maintain normal blood sugar levels. A lack of cortisol can cause blood sugar levels to become too low which will cause seizures. in addition, cortisol is essential fot maintaining normal blood vessel tone, by allowing the walls of blood vessels to contract normally. Like low aldosterone, low cortisol levels can lead to low blood pressure, poor circulation, and shock
This was not to scare you but to inform you as a friend. Has her blood test came back okay? Her doctor should have noticed something since she hasn't been taking them for 1.5 years. i know your just a friend and she probably doesn't discuss this with you but if I were you I would consider speaking to her parents. She is putting herself at danger. I can see where she might feel better my daughter 8 yr old SWCAH always feels up and down but they still need their meds daily. Best of wishes
JD
