Preparing for Appointments: Pediatric Treatment Specialists
My son was born with a set of birth defects that would require specialized medical care throughout his life, so it came as no surprise when he was referred to several different pediatric specialists at a very young age. I had no idea what to expect from a specialist visit, and it was 1994 so we were still 4 years away from Google (yes, my son is older than search engines!).
While much has changed since my son’s first appointments, the apprehension that parents feel remains the same. Balancing your own fears with your child’s can be overwhelming. These tips and resources are here to help you prepare for your child’s upcoming specialty care visits.
Before the Appointment
Hurry up and wait (and make an appointment). If your child needs urgent treatment from a pediatric specialist, your pediatrician or care team will expedite the scheduling process to get them seen quickly. If not, you can expect to wait weeks, or even months.
When scheduling, ask if you can speak with a nurse or physician’s assistant to learn what typically happens during the first visit. Knowing what to expect can help you feel more prepared and make it easier to talk to your child about what’s ahead.
If your schedule is flexible, ask to be placed on a cancellation list, and you may get in sooner if another patient cancels an appointment.
Prepare Yourself (and your child too). While waiting can be frustrating, it gives you a chance to prepare and to have a little background information before you walk through the door that first time. Every medical specialty has a different focus, so take some time to learn about the type of specialist your child will be seeing. Knowing about the specialty can also help you generate questions.
HealthyChildren.org, a website for parents from the American Academy of Pediatrics, has a Pediatric Specialists page that offers an excellent overview of pediatric subspecialties to help you get started.
If your child is an infant, there's not much you need to explain to them—but do come prepared for the wait. Bring extra diapers, snacks, toys, and anything soothing (like a pacifier or a favorite blanket).
If your child is older, they may be nervous about seeing a doctor. The Children’s Hospital of Philadelphia (CHOP) has lists of books, videos, picture cards, and other practical resources when preparing your child for a visit to the doctor.
Gather your questions (and write them down). Some parents like to use an app on their phone, while others prefer simple pen and paper, but the important point is to write down your questions as they come to you. You may think you will remember your questions but in the moment it’s easy to forget.
The Agency for Healthcare Research and Quality (AHRQ) offers a free QuestionBuilder App that helps you generate and manage questions for your doctors and lets you email those questions to a support person who will be accompanying you to appointments.
During the Appointment
Bring someone along with you (with a notebook). Consider bringing a trusted friend or family member to the appointment. They don’t need medical expertise—what matters most is having another set of ears and someone who can take notes while you focus on the conversation. It’s easy to miss details when you’re processing new information or managing your child’s emotions in the moment.
Make the most of your time (and leave with important takeaways). After all your preparations, the actual time you have with the doctor will go by quickly. Specialty visits often start with a review of your child’s medical history. This part of the appointment may be done by a resident (a doctor in training), a fellow (a physician completing subspecialty training), a nurse practitioner, or a physician assistant.
Whoever starts the conversation, having a written summary of your child’s medical history, current medications, and a journal of symptoms can make this part much smoother.
Listen carefully during the appointment and let your support person take notes. If anything is unclear, don’t hesitate to pause and ask for clarification. Most providers want you to feel informed, but they may unintentionally use language or shorthand that’s unfamiliar to you. Sometimes the topic is so familiar to them that they forget it is all new to you. It’s okay to remind them. Nemours Kids Health offers additional tips for getting the most from a doctor’s visit.
At the end of your visit, recap the discussion, and make sure you are clear about next steps, including tests and procedures needed, scheduling follow-up appointments, new prescriptions and how your child will take them, and any decisions that are still pending.
Know how to Reach your care team
Knowing how to contact your care team is the most important piece of information you’ll need before you leave from your first visit. Whether you forgot to ask a question, notice a change in your child’s symptoms, need to report medication side effects, or have concerns between visits—you’ll want to know exactly how to get in touch.
Some providers use online patient portals with messaging features, while others rely on voicemail, office staff, or an answering service after hours. Communication systems vary, so don’t leave without asking how they handle questions and follow-ups.
To make sure you know the right procedures for contacting your child’s doctor, have these questions ready to ask before ending the visit:
How should I contact you if I need to reach you quickly?
What’s the process for reaching you outside of business hours? Is there an answering service?
What should I do if my child has an urgent issue after hours or on a weekend? Does the callback process differ at night, on weekends, or holidays?
When I call, who will respond—will it be you, a nurse practitioner, or another staff member?
How long should I expect to wait for a callback or response? If I don’t hear back, how long should I wait before calling again?
Is there a patient portal I can use to message the care team?
For patient portal users:
Will you be the person replying to me directly?
How long should I expect to wait for a reply?
How long should I wait before calling the office (or answering service)?
Let your pediatric specialist know that being able to get in touch with them is important to you. Then write down the contact information (or enter it into your contacts) and keep it readily available.
When our pediatric specialty visits were over, my son and I always headed out for a pre-planned special outing or treat. Visiting the doctor’s office can be hard work. We both deserved a fun reward for a job well done!
Additional Resources
Visit Medical Home Resources for Families and Caregivers for more information on partnering effectively with your child’s medical team.
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Written by: Nancy Seeger, mother of two magnificent children (now adults), and currently a part-time Branch Services Assistant at the Cuyahoga County Public Library. As a health librarian for 17 years, Nancy Seeger had the privilege of helping parents at the Family Resource Center at University Hospitals Rainbow Babies and Children’s (Cleveland, Ohio). Librarianship is her second career, having spent 12 years as a special education teacher with Deaf and hard-of-hearing students in Beachwood, Ohio.