Like any important, long-term relationship in your life, the one you have with your child's medical team will need attention, care, and some give-and-take. Making sure your expectations are clear and your mind is kept open will pave the way to great care for your child.

Who's the Boss?

You are. But then again, it's not that simple. It is vital for parents or caregivers of children with diabetes (as it is for parents or caregivers of children with any disease) to feel empowered. No one, even the most dedicated doctor on earth, cares more for your child and his future than you do. It's fine to embrace that and remind everyone of that. Any time it comes down to push versus shove, you will always have the final say.

That being said, a good boss knows how to delegate responsibility and use the insight of trusted experts around him. This situation is no different. You need to have a healthy respect for each member of your team. Because although parents often do become just about as close to a fully trained, unlicensed endocrinologist as someone can get, your pediatric endocrinologist is still the trained doctor. If she tells you that you're running your child's blood sugars too low, take what she is saying into consideration. Ask for backup information. Debate, but don't argue.

Some parents might find it intimidating to debate with a doctor; you simply cannot afford to be intimidated. As long as you are respectful and listen to the doctor's side, fight for whatever care you think your child needs.

When to Call and When Not to Call

It's easy to get addicted to calling your medical team for advice.

It's just as easy to feel guilty and not call often enough. Knowing when to call and what to call about will help show your team that you understand and respect them. When you call for the right reasons, they should always welcome your call.

If your child's blood sugar does something that concerns you (such as a violent swing upward or downward that you do not understand), it is always okay to phone the doctor on call. Even if all they say is “It's fine,” it is always better to err on the side of caution, and your team understands that. Usually, in the first months, parents make a lot of these calls. As time goes on and you begin to trust your own actions and reactions to highs and lows, you'll eventually find you really don't need to call for that reason as much.

If your child has unexplained ketones or large ketones at any time, it is always right to call. Ketones are always an emergency situation (see Chapter 19 for more details on sick day management), and parents often need a doctor or nurse to talk them through the process of bringing that blood sugar down.

If your child is vomiting, a call to the team is always warranted. (Again, see Chapter 19 for details.)

It's not okay to telephone a doctor who is on call in the middle of the night for a prescription refill. Unless you've dropped all your insulin on the floor in the middle of the night, maintenance things like script refills should always be handled with calls during regular office hours. So, too, should appointment cancellations. Silly as it sounds, some parents do telephone on-call doctors for such things.

On the other hand, any time you are at your wit's end and you need to talk to an expert immediately, your team should respect that, as silly as your need may seem later. Both sides need to have compassion, patience, and some give-and-take. With that, a good team will help your child until the cure is found.