Sally,

We have 2 girls with ssw cah, they are 8 & 6.  We are fortunate enough to have a full time nurse at both of their schools.  We have not always been that fortunate so our plan of action has always been if there is no nurse available if you think they need the shot, call 911 and us.  I have never trusted anyone else to give the shot.  Like I said we do have a nurse and the teachers and all staff that deal with our girls know about their situation and what needs to be done in an emergency.  I have attached to this letter a copy of our emergency letter.  All you have to do is fill in the blanks.  This letter has been tweaked to best suit our needs over the last 8 years.  We discovered that some of the letters we tried to use, they did not get an immediate reaction from hospital staff.  If you feel you can use it that would great.  If you have any questions about getting ready for school, just let me know. 

Thanks,

Tonia

EMERGENCY INSTRUCTIONS FOR _______________

_____________ has the medical condition called Congenital Adrenal Hyperplasia. Her body does not make the life essential hormones cortisol and aldosterone. Cortisol is needed by the body to maintain the body’s energy systems, cope with medical stress and maintain fluid, electrolytes, normal blood sugar levels and control the body’s reaction to stress. Aldosterone is needed to retain salt. When these symptoms occur, we refer to it as "the golden hour" with a short period of time to get treatment. We are not only concerned by the adrenal crisis but the severe dehydration that can occur very rapidly, even if they do not exhibit the "classic" signs of severe dehydration, when they become ill.  When illness occurs, they must be attended to immediately to prevent a life threatening adrenal crisis.

FOR THE EMERGENCY ROOM PHYSICIAN

It is important to know that they do not need to be in adrenal crisis to need the following solutions.  This is to prevent adrenal crisis. 
In the situation of adrenal insufficiency or adrenal crisis, the patient will need:
1. Immediate IV normal saline with 5% glucose 20 ml/kg in one hour followed by continuous IV fluid replacement.
2. Solu-Cortef 100 mg IV bolus, followed by Solu-Cortef 50-60 mg per day continuous IV drip. (This may be given in four divided doses in IM or IV bolus).
3. If any difficulty in establishing IV access occurs, administer 100 mg (2cc) solu-cortef IM.

Treat Hypoglycemia Immediately
Immediate diagnosis and treatment is essential if the blood glucose is less than 60.
*   Administer 50% dextrose diluted to 25% in water at an initial dose of 1 mL/kg followed by an infusion of 10%           dextrose at 2-3 mL/kg/hour (3-5 mg glucose/kg/,in).
*   If any difficulty in establishing IV access occurs, administer glucagons 0.03 mg/kg IM (not to exceed dose 1 mg).            Glucagon therapy has a transient effect and must be followed by an intravenous dextrose infusion as above.
      


Symptoms of Adrenal Insufficiency may include (this list is not all inclusive):
-vomiting             - extreme weakness/ loss of consciousness
-weakness, fatigue, lethargy -drop in blood pressure
-hypoglycemia       -fever
-loss of appetite        -pallor


DIRECTIONS FOR MIXING SOLU-CORTEF IM
1. Remove protective cap, give the plunger-stopper a quarter turn and press to force the dilutent into the lower compartment.
2. Gently agitate to mix the solution
3. Sterilize top of plunger-stopper with alcohol swab.
4. Insert needle squarely through the center of the plunger-stopper until the tip is just visible.
5. Invert vial and withdraw the dose (1 cc = 100 mg)
6. Cleanse child’s thigh and insert needle like a dart, draw back on plunger to check for blood, inject evenly, then pull straight out and wipe with gauze.

FAILURE TO RESPOND TO THESE SIGNS & DELAY IN TREATMENT MAY PLACE ________ IN A LIFE THREATENING SITUATION.

If you have any questions regarding treatment, please call her endocrinologist, Dr. _____ at ________ or her
pediatrician, Dr. ______ at _________. 
Parents- (home)  ___________,   (cell phone) ________