Tips & Tricks*

If you have suggestions that have helped make it easier for you, your child and/or your family to navigate more easily through the world of special needs, please email them to us info@fgsyndrome.org.

Navigating the Medical World

• Arrive at 1st-time appointments a half-hour early. There are sure to be forms for insurance and medical history to fill out, which will take much longer than the usual 10-15 minutes suggested.
• A calendar or planner should become essential diaper bag equipment.
• If your child is seen in several specialty clinics at the same hospital, have clinics coordinate appointments for the same day, saving you multiple trips. Multiple appointments might seem to be exhausting, but there is an advantage. Your child goes to the top of the “waiting list” at one clinic when they know you are due down the hall in an hour for another, eliminating long waits.
• Always keep a notepad handy at home to jot down questions you want to ask at appointments, then pull it out at the time of your appointment, and jot down answers.
• Take another adult with you, especially to first-time appointments. That companion will hear pertinent facts that you might miss. Compare notes on the drive home.
• Keep a journal of every appointment and hospitalization, writing in your own words what occurred. This essential history can come in handy at a future appointment.
• If a new treatment or medication is prescribed for one anomaly, it is the parent’s responsibility to ask how it will affect other anomalies.
• If the child is hospitalized for one anomaly under one specialist, it is important that the parent sees to it that daily medications, routines and treatments for all other conditions are known and met by the hospital staff. Too often these conditions become secondary as they treat the condition for which the child is hospitalized.
• If your insurance company requires a referral prior to an office visit, use a notebook to keep track of the number of appointments approved and the referral number. This will prevent you from constantly having to check on approved referrals.
• In today’s modern world, many physicians rely on e-mail as a way of communicating. Check with your child’s physician to see if this is an option.
• If you are leaving a message for a doctor and you are in need of a returned call, as the receptionist if the doctor returns calls during certain times of the day. If the physician calls at random times during the day, you can tell the receptionist that you will be available during a certain time period. This will prevent you from anxiously sitting next to the telephone waiting for the doctor to call.
• If you are scheduling an appointment that is not a “routine visit” let the person who schedules the appointment know the reason for your visit. This person may choose to allot more time for the visit so that the appointment is not rushed.
• Physicians have a term for concerns that are raised at the very end of the appointment. Comments such as these are often called, “door knob comments.” If you have something that is of concern, it is best to present the thought at the very beginning of the appointment. This gives you and the physician ample opportunity to discuss the concern. Discussions left until the very end of the appointment (as the physician is leaving) do not receive the utmost attention.
• Have you ever left a doctors visit and thought about a question that you wished you had asked? Before going to a doctor’s appointment, make a list of questions and concerns. The list will help you to ask all of the necessary questions and will ultimately address your concerns.
• Make sure you bring x-rays, MRI readings or other test results with you to the appointment. This will make your meeting run much more efficiently.
• The Primary Care Doctor (PCP) or Pediatrician is usually the person in charge of your child’s care. This individual oversees your child’s general health. Make it a practice of keeping in touch with the pediatrician. If your child has undergone significant testing, a change in medication or some other treatment that is significant when it comes to your child’s health, take a moment to jot down this information and send it along to the pediatrician. Updated information is very helpful especially in the case of an emergency.