Preparing for the first pediatric endocrinologist appointment

The minutes, hours, and days after your child receives a diabetes diagnosis can feel like a blur. You're in a delicate balance between education and emotion, and, in the meantime, trying to help their body mimic the performance of a fully functioning pancreas. It's a lot, and you're doing great!

One of the first items on your to-do list will be to make an appointment with a pediatric endocrinologist. To ease some of the mental burden associated with adding a new member to your child's healthcare team, here's a look at what to expect and how to prepare.

Finding a pediatric endocrinologist

The first question you have is likely, "Where do I start?" There are several ways to go about locating an endocrinologist after your child receives that initial type 1 diabetes (t1d) diagnosis. Depending on how the condition was diagnosed, you may already be done with this step. But if you're still looking for diabetes resources, here are a few ideas:

• Use the customer service line on your insurance card to request in-network providers.
• Ask your child's primary care physician for a pediatric endocrinologist referral or recommendation.
• If your child was diagnosed at the hospital, you could inquire about practices associated with the hospital (on a personal note, this is how I was placed with an endocrinologist!).
• Engage with the diabetes online community via JDRF community forums or similar outlets.

Preparing yourself for the first visit

The first appointment is scheduled, now what?

As a parent myself now, I have a better understanding — and some serious empathy — for what my parents had to go through when facing my t1d diagnosis. With the benefit of hindsight and the clarity of parenthood, here are four considerations as you prepare yourself for that initial visit.

1. Jot down what a "typical" day looks like for your child prediagnosis. This will be helpful for the diabetes educators and nutritionists who will be giving you initial insulin dosing instructions. Include items such as:
   • Typical meals and timing (e.g., cereal for breakfast at 7 a.m.)
   • General idea of physical activity (e.g., PE every day from 10-11a.m. and walk home from school from 3-3:30 p.m.)
   • Differentiate weekdays versus weekends if the day's activities are significantly different
   • Note any times during the day where fingersticks, snacking, or insulin delivery may be difficult (e.g., swimming lessons Saturday mornings at 9 a.m.)
2. Prepare yourself to be a practice pin cushion. Part of those first visits includes learning how to draw up and administer insulin shots using a syringe or insulin pen. Being a willing participant in these lessons will show your child that you're dedicated to understanding how they feel.
3. Write down your questions. One sign of a good endocrinologist is their willingness to thoroughly answer any and all questions. After all, that's their job. Beyond the logistics of the day-to-day tasks, be sure to inquire about technology that may make life easier, such as insulin pumps or continuous glucose monitors (CGMs).
4. Advocate on your child's behalf. Our default operating mode as parents is "protector," but be sure to consciously fulfill that role before and during the appointment. Ask your child how they're feeling (I remember feeling incredibly frustrated right after diagnosis), and continue to assure them that you're in this together.

Preparing your child for the first visit

Preparing your child for the first endocrinology visit is largely dependent on their age and maturity. Here's some actionable advice for both younger children and older kids.

For younger children:

• Bring something comforting from home, such as a stuffed animal or blanket.
• Instead of focusing on the technical details of what may happen at the visit, stay positive and reassuring. Saying something like, "We'll be learning how to manage everything together, I'm here for you!" can help.
• Consider a nonfood reward to motivate an open mind. This could be anything from playtime at a favorite park to a new set of crayons.

For older or more mature children:

• Respect their independence. Let them decide how much they want to handle on their own.
• Even if you don't get positive confirmation, keep assuring them you'll always be their security net.
• Let them know that their opinion of the endocrinology team matters, as they're the patient.

What to expect during the appointment

The relationship you forge with your endocrinologist and their support staff will be significantly different than with a pediatric primary care physician. This doctor and their associates will be your guides as you navigate an active condition with sometimes complicated management techniques.

During this first visit, the office will likely give you an overview of the resources available. Managing such a multifaceted condition like t1d requires education on everything from fingersticks to how to fill a syringe to carbohydrate counting. Many pediatric offices have these types of resources in-house, and the first few appointments will consist of a round-robin of specialists. I remember my first week after being diagnosed as a crash course in the logistics of diabetes (how to give a shot, how to check my blood sugar, etc.) and a detailed diet review with a nutritionist.

Don't be afraid to ask for help around educating other adults that care for your child. The diabetes educators will provide resources to educate teachers, school nurses, or other caregivers on the basic logistics associated with managing t1d. They can also give tips specific to your child's age, diabetes equipment suite, and predicted pinch points.

The endocrinologist's office is also a great place to try out new diabetes technology and equipment. Most offices have display units available for patients to get a hands-on feel before going through the process of placing an order or request. For me, it was nice to see a comparison of the different glucose meters side by side for comparison, since these devices were completely foreign to us at the time.

Make a plan for managing between appointments

For families with a child living with t1d, the office visit is just the tip of the iceberg. Pediatric endocrinology visits should be seen as more of a sync point in the ongoing efforts of diabetes management. Potentially more important than the appointment itself is the after-visit plan.

Before leaving for the day, complete a mental checklist:

• Get the contact information for the 24-hour on-call nurse.
• Understand how to request prescription refills.
• Make a plan for reviewing numbers and making small adjustments between appointments.
• Sync up any share apps.

Taking steps forward

Afterward, make sure you reward yourself after making it through that first endocrinologist visit. It's easy for us as parents to focus on our child, the patient — but our mental health is incredibly important in the diabetes-management marathon. After you've had time to decompress and unpack all of the education you received, assess the relationships with this office's doctors, nurses, educators, nutritionists, and other support personnel. Caring for someone with t1d takes focus, tweaks, and energy, and ultimately a robust relationship with everyone in the pediatric endocrinology office.

Looking for more information about caring for a child with t1d? Check out these articles for t1d parents and caregivers on the Edgepark Health Insights blog.