Tips:

Managing Your Child’s Health Care Needs

by Kim R

  • Keep in mind that you are your child’s best advocate. Don’t be afraid to question your child’s medical providers or seek second or third opinions when you feel conflicted about the medical advice you are receiving.
  • Keep in mind that medicine is not an exact science.  It is a “practice,” which requires a series of educated guesses, trial and errors.  The medical staff, while clearly experts in their respective fields, are only human and can make mistakes.
  • Establish a respectful relationship with your child’s doctors and nurses.  Respect leads to better communication and quality care, which is in the best interest of your child.
  • Purchase a fax, copier, and scanner so you can have lab slips, referrals, and other medical information faxed to your home and so you can fax insurance and payment information to medical providers and your insurance company.
  • Take a notebook with you and keep notes (as best you can) at medical appointments.
  • Keep a Daytimer/appointment book to record all your child’s medical appointments and the names and contact information for all medical providers. Keep the book open in a convenient place (on a desk, counter or dresser) and make it a priority to review the schedule for each day the night before.  Keep copies of referrals and other important medical information in this book. Take the appointment book with you to medical appointments.
  • Establish a single page medication chart for your child that can be posted to your refrigerator and placed in a wallet and/or purse so it is easily accessible to you.  The medication chart should include the name of each medication your child is taking, the approximate time it is given (morning, afternoon, or evening), dosing (including milliliters and milligrams per milliliter), the purpose for the medication, and any special instructions.  Include a list of all medicines your child is allergic to or prohibited from taking.  Also include contact information for important medical providers (to include in-office and after hour phone numbers).   Note any requirements that warrant calls to medical providers or emergency room care, (such as specific temperature or blood pressure readings). Be sure all adults in your house are familiar with this chart.
  • Establish a routine for administering medication and stick to it.  This will help you avoid any confusion about who is supposed to administer morning, afternoon, and evening medications.  It is equally important to maintain good communication with your spouse or in-home nurses to ensure there is no duplication or missed medications.  Consider maintaining a checklist where each medicine is checked off as it is administered in the beginning, until the routine is firmly established.
  • Try to request copies of test results or other important medical records at each appointment.  Keep yearly files for research, medical information, medical bills, insurance statements, explanation of benefits, and flexible spending statements.
  • Be aware that it can take six months or longer to get your child in to see a specialist as a new patient.  Ask your pediatrician to help you secure an appointment whenever she refers your child to a new specialist.
  • Talk to and prepare your child for upcoming medical procedures, even if you think he may be too young or unable to understand.  You don’t want your child feeling blindsided.
  • Consider purchasing a child’s doctor kit and a doll that will help you explain surgeries or medical procedures to your child.  You can purchase dolls that are made to look like your child and which can include hospital masks and gowns and medical equipment (such as g-tubes or dialysis catheters).
  • Try to schedule pleasant activities directly following any unpleasant activities, such as hospitalizations, emergency room visits, shots and blood draws.  This will give you and your child something pleasant to talk about and look forward to. Try to give your child a voice in what these pleasant activities will be.
  • Try to give your child a voice and some control in his medical care. For example, allow your child an opportunity to answer questions from medical providers before you do. Allowing your child to administer his own medications (with your supervision) may help reduce power struggles and control issues.
  • Try to piggyback medical appointments so you have less outings.
  • If your child has frequent blood draws or a medical condition that can require STAT blood draws, ask your child’s pediatrician or medical specialist for a standing order.
  • Consider ordering your child’s medications through mail order programs.  It can save you money and time at the pharmacy.  Put any medications at your local pharmacy on “auto-refill.”
  • Ensure there are other people in your life who know how to care for your child in the event something happens to you and for respite purposes.
  • If you travel out of state or out of the country for business or vacation and have to leave your child in the care of a family member or friend for an extended period of time, consider drafting an Authorization for Temporary Guardianship of Minor or Parental Medical Consent Form to ensure your child receives any needed medical treatment in your absence. This is equally important for healthy siblings.  Also consider writing an “instruction manual” with detailed information about how to care for your child.
  • If you don’t already have one, have a will drafted that will provide a guardian and establish a trust to care for your child in the event of your death.
  • As difficult as it is, you need to take time to take care of yourself.  You need to maintain your own health and well being in order to effectively manage your child’s care.
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