Q: My daughter’s first checkup after diagnosis with type 1 diabetes is coming up soon. The past few months have been a blur; what happens at this appointment? What are some questions I should be asking? I want to be an informed advocate for my child.
A: With so many emotions to process and new routines to incorporate into your family’s life, it’s no wonder the past few months have been a blur. If you’re like most parents, you’ve probably forgotten most of the million things you were taught about diabetes right after diagnosis. Your diabetes care team understands this. In fact, it’s actually estimated that parents and caregivers only retain about 25 percent of initial teachings about diabetes care. Part of this is just a byproduct of having so much information coming at you at once; but it’s also because you might not have had the need to apply much of the new knowledge yet, so the information quickly became lost.
What all this means is that a great deal of your first post-diagnosis visit will likely be spent reviewing concepts introduced when you first met with your diabetes educator. To prepare, bring along a list of questions you have about day-to-day care routines. Still not sure about certain aspects of insulin dosing, carb counting, blood sugar checks, ketone testing, or responding to highs and lows? Now is the time to ask. Also, ask about situations that haven’t come up yet, but for which you want to be prepared — for example, knowing how to deal with an emergency low or respond if your child comes down with a cold or flu. Check your calendar for upcoming special events, trips, or occasions; and write down any questions these events might bring up.
At this visit, your team will also repeat the hemoglobin A1C and compare it to the reading taken at the time of diagnosis. It should be much lower. To help provide a clear picture of blood sugar management, bring your child’s meter and any blood sugar logs and food diaries you may be keeping. Since it’s common not long after diagnosis for children to go through a phase of lowered insulin requirements — commonly called the honeymoon period — this is another good topic to discuss. Ask your diabetes educator about how to recognize the honeymoon, how long it lasts, how you should respond, and what signs tell you it’s over.
Another portion of the visit will be spent talking about how your child is coping with diabetes emotionally and participating in her care, given her developmental level and the types of common care tasks children in her age range can handle. It’s important that children not assume too much responsibility too soon, which can lead to diabetes “burnout” and poor management. Your diabetes educator may also want to know how the rest of the family is adjusting to the changes diabetes brings.
Really and truly, any question you have about any aspect of your child’s care is fair game at this visit — and encouraged! Jot down your questions as they come up and bring this list to your appointment so you can make sure everything is addressed. Depending on the topics that come to light during this visit, follow-ups with appropriate members of your team — including your diabetes educator, registered dietitian, social worker or therapist, or endocrinologist — can be scheduled as needed.
–Rosemary Briars, N.D., P.N.P.-B.C., C.D.E., C.C.D.C., is clinical director and program co-director of the Chicago Children’s Diabetes Center at La Rabida Children’s Hospital in Chicago.
How Other Parents Deal
“Our C.D.E. asks us to email her with any questions we want to ask at the appointment a day or two before the actual visit. This helps her if she needs to check with the endo on anything or find a certain piece of information that would be helpful. On my end, sending in my questions beforehand keeps me organized and focused on what I would like to discuss at the visit. It’s a win-win!”
–Jennifer V., Asheville, N.C., mom of 8-year-old Abigail
Disclaimer: The information in these articles is not intended as medical advice. Families should check with their healthcare professionals regarding individual care.