Living with CAH
Getting Ready for School
As the primary caregiver for a child affected by CAH, one of the most difficult transitions can be handing over that care to others while your child attends school. There are medications to keep track of, signs and symptoms of illness to look for, and the need for appropriate and immediate action in case of emergency.
While this might be a source of stress for parents, rest assured that as time passes, you’ll get into the groove a better, stronger parent. Managing CAH in schools is a partnership between you, the teacher, and the administration (school nurse, if available, and the principal). While the focus of this article is on public school, many of these ideas and strategies can be used in preapring for daycare, preschool, private school and camp. Here are a few pointers to help those parents about to send off their precious child with CAH.
- Meet with the school nurse (or person in charge of medication administration). Discuss CAH with them and try to convey the seriousness of the condition without too much drama.
- Find out what is required in your area concerning daily medication. A doctor’s order is generally required detailing the time, dose, reason for medication (diagnosis of disorder), side effects, if any, etc. Many times it will require the doctor’s signature AND the parent’s authorization. These requirements vary not only from state-to-state, but also from county-to-county, etc. Some jurisdictions are extremely rigid whereas some are more flexible. Please note: A separate doctor’s order might be required for medication administration outside of the daily dose. This is called a PRN (Latin for ‘as needed’) and simply covers for medication to be given under other circumstances. This could include if you have (GASP!) forgotten the morning meds and you’d like the school to administer them, if your child has had a serious injury during the school day and you’d like Cortef to be administered orally, if your child develops a high fever during the school day and you’d like extra Cortef to be administered orally. A PRN will usually include wording such as, “to be administered in times of injury, fever, and/or illness and/or at the parent’s discretion” and should include a dosage limit, i.e. “up to X mgs”.
- Meet with your principal. Most principals want to be aware of any child at their school who might have unique needs or disorders. This is a good failsafe for an emergency situation if the nurse is unavailable. The principal is in charge of everything that happens at that school; attempting to explain CAH in an emergency to the person in charge results in wasted time.
- Meet with your child’s teacher(s). This is where your child will be spending his day. Meet with the teachers to give them a brief rundown of what CAH is and why your child might have special needs. Many parents have their CAH child carry a water bottle to prevent dehydration, but be prepared that a doctor’s order might be required. Discuss falls on the playground and whether or not you would like to be called for any and all mishaps.
- Try to schedule meds at times that are the least disruptive or outside of school hours. Fitting in a trip to the nurse’s office during a break (perhaps on the way in or out for recess) or in between classes is generally the best way to allow for a school day that is as normal as possible. If there are no breaks in between classes near the needed time, discuss with the teacher the best time to allow your child to leave the classroom.
- Create a written health plan with the school for monitoring and treating your child while they are at school including agreed upon policies and procedures for everything from medication distribution to monitoring your child for signs of illness and access to water in the classroom. In the public school system accommodations and modifications can be obtained under Section 504 of the Rehabilitation Act of 1973.
One issue that might be a difficult one for some of you: Discuss with your doctor whether or not s/he considers Solu Cortef a necessity for school. While this may seem like an obvious necessity to you, remember that you are dealing with legal issues concerning an IM injection and you may find yourself in a struggle with the school system. Most of us carry the Solu-Cortef kit with us everywhere. However, to require the school to do so can get tricky. Consider field trips, for example. Depending on the rigidity of the school system you are in, many areas will require an RN to be available to give an injection. If this means hiring an RN to accompany your child on all field trips, many school systems will balk.
Here’s what the American Disabilities Act states: “Public entities are not required to take actions that would result in undue financial and administrative burdens. They are required to make reasonable modifications to policies, practices, and procedures where necessary to avoid discrimination, unless they can demonstrate that doing so would fundamentally alter the nature of the service, program, or activity being provided.” (www.ada.gov ADA Title II: State and Local Government Activities). In other words, this is an issue that will vary greatly throughout the municipalities. This is also an area where those in private schools might be told that their child is too great a “risk” to have in their school. Again, carefully consider bringing up the Solu-Cortef issue. If you live or work close to the school, or if you have family or friends versed in IM injections and who can arrive at the school quickly in an emergency, maybe this is an area where you would want to maintain 100% control. Talk to your peds endo about the best course of action for your CAH child.
To assist parents in this process, CARES Foundation has created a Getting Ready for School/Camp packet including:
- Getting Ready for School/Camp Parent Tips
- Medical Information – Sample Letter (aka doctor’s note)
- Medical Supply Kit Checklist
- What is a 504 Plan and How Can it Help My Child?
- 504 Accommodation Plan Request – Sample Letter
- Health Plan Worksheet
- Congenital Adrenal Hyperplasia Due to 21-Hydroxylase Deficiency: A guide for affected individuals and their families
- CARES Foundation Emergency Instructions brochure
We all know that our CAH kids are among the brightest kids out there, and they certainly deserve the best we can give them. Sending them off to a new setting can be scary, but with good communication lines, you can ensure there is a plan in place to ensure the health of your child and appropriate response in emergency situations when your child is not in your immediate care.
Special thanks to Karen Bassler for her original article “The Most Wonderful Time of the Year” as it appeared in CARES Foundation’s Fall 2002 Newsletter on which this article is based. She is the mother of two daughters, one of whom has CAH. She is a certified Nurse Health Assistant who works part-time in the health suite of an elementary school in a large metropolitan suburb. Mrs. Bassler was recently appointed to a consumer seat on the Maryland State Advisory Council on Hereditary and Congenital Disorders.