I agree every state should have newborn testing for CAH.  You should write you state senators and representative and ask them to introduce and passlegislation for it.  That is what I did in Virginia and my Senator Patsy Ticer got it introduced and passed!! I emailed, called and wrote their offices.  Virginia has already identified three or four children and they just began testing a few months ago.  Just think these babies could have died or gone into adrenal crisis.  CAll, email and write your senators now!!

You need to have solu-cortef.  Go to the CARES web page and you can download instructions with pictures on how to give it.  You always need to have it - if you doctor tells you that you can get to the hospital in time.  She or he is WRONG.  VERY WRONG!!!  Call your ambulance - they won’t have it ... the ER just doesn’t have it laying around and they have to order it and every minute counts.  You need it for high fever, recurrenting vomiting (more than twice); diarrheaea, and injury.

Brenda is right - follow your doctor’s advice but PLEASE get solu-cortef so your child will not die.  THIS IS VERY IMPORTANT!!!! 

Your child does not make adequate cortisol, a horomone that has many purposes in the body, including maintaining blood pressure, normal blood sugar, and resistence to physcial stress (infection).  Normally cortisol is secreted in small amounts throughout the day, however, under period of physcial stress, such as severe infection, trauma or anesthesis, surgery, extensive dental work, an accident, vomiting, etc, a person normally has the ability to increase cortisol production the ten times more than normal.   Since your child has a deficiency of cortisol, hydrocortisone must be given daily, and extra hydrocortisone and IV fluids must be given during times of physcial illness.

If the illness is mild - triple the cortef (you do not increase the florinef).  Do not wait.  Say you gave cortef at 7 am and fever started at 10am - triple the dose immediately and give mortrin or tylenol to reduce the fever.  If the fever is not reduced within 30 to 45 minutes and the child is listless (legatric - like a rag doll - not active) go to the hospital for IVs.  Give the solu-cortef immediately. You can not over dose on cortef (remember a normal person would automatic make 4 to 10 times more normally - and you have to be the one to make the increase for your child - the child is depending on you - don’t let the child down - don’t let him die because you were afraid to give the injection or increase the medications for an illness - be safe than sorry.

Cortef last 6 to 8 hours in the body.  It is important to wake a child for the medications - especially if the child is sick.  Remember - the child may look asleep but could be in a coma or near one because of the lack of cortisol. 

Adrenal crisis is low blood presssure, brain swells,  coma, and death due to the lack of sodium and sugar in the blood, and CORTISOL.  You have to make sure they get more cortisol.  You can’t let them sleep and think they will be okay during an illness (fever, infection, etc).  Very important for a child under the age of 5.  Small children are less resistance to infection and can go very fast into an crisis.   

roberta (roberta.pre@msn.com)