This is the letter that the school has for our 2 ssw cah daughters.  The nurse, teachers and principal have a copy.  Also the school staff that are directly involved with our girls have information to send them to the nurse if certain symptoms occur.  I think in our school it’s called a health action plan.  The girls also have a water bottle on their desk with them at all times.  I have been very pleased with the way they have handled everything.  On field trips, my husband or I go and if we cannot the nurse goes.  You will need to talk to your individual school because not every school has a nurse.  We are blessed to have a great nurse!  But we have not always been that lucky.  Check before the rush of starting school occurs.  Do it now if you have time.  This way there will be time to communicate with the school and you can work out any kinks before school starts.  Plus, there is an enormous amount of paperwork we had to fill out.  It is much better to do this when there is no "beginning of the school year rush", either with you, the school, or your doctors office.  At the beginning of each school year I make a kit for each child that can be easily taken anywhere that has solu-cortef, needles, bandaids, alcohol swabs, gloves and instructions.  It also includes an epi-pen jr.  My oldest is severely allergic to bees.  My youngest has never been stung, but we have one for her just in case.  Best of luck to you!  I hope this helps!

Tonia

Copy of our letter:

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 (2 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 _________. 

___________- (home)  __________,  ________- (cell phone)  _________,  ________- (pager)  _________