It’s very beneficial to talk to your child’s doctors, nurses, and clinicians. Like I said, anyone who does it for a living knows exactly what they are doing. Even at this point, Thomas has had it for a long time and I’m learning a lot of things each and every day still. Thanks to the people who do this for a living, it made our transition a lot easier than it could have been.
Father
They would dismiss what I would say
We have been going to another children’s hospital for her treatment where there was a lot of staff turnover. The clinicians there were clearly over worked. I would say to them each time that she doesn’t like to eat very much. She’s not gaining weight. And they would dismiss what I would say. Finally, after a year of saying that, that they said “There’s something wrong here. You must be withholding food. You’re not feeding her properly.” We were so upset by that that we decided to leave and seek treatment elsewhere.
Mother
Finding a good fit
We had to change medical teams three times twice in order to get our third one that fit our family. I think that made a huge difference for us. For example, with the first and second nutritionist, they were saying that we should put him to bed with goldfish or vanilla wafers or some ice cream and I was saying, “But we’ve been working hard for him to like apples with honey or peanut butter or whole wheat crackers.” When we were trying to do healthy things, they were saying a carb is a carb.
That was very stressful for me because I didn’t want Billy hearing that because I didn’t believe in it. I don’t think the nutritional value of a goldfish is the same as a bowl of blueberries. You know, it just didn’t make sense to me. So as soon as we found our third nutritionist, she was saying, “Oh my goodness, that’s fabulous. I love that you’re giving him healthy snacks at bed time. The glycemic index is better and I have some other ideas too because this is what I give my kids.” It was fun and I got to learn a lot. She had great recipes and she helped us do what we wanted to do.
Mother
Information is available and ready
There were situations where we weren’t giving him the right amount of carbs in the beginning. Sometimes we would switch to a different type of food that had the same carbs, but it would actually not really help. It was actually lowering his blood sugar a lot quicker than another meal. And then we learned, after to talking to the doctors and a nutritionist, that other foods had cheese on it or some other protein which slowed down the process of breaking down the sugars in the other foods. Without that information, we would still be sitting here scratching our heads thinking we are doing something wrong on our end? As long as you log everything in and you keep a good grasp on it, there is nothing you can’t find out, whether through a nutritionist or a doctor. You have the information available and ready, and doctors and nutritionists can break it down a lot better than most people think they could.
Father
We are very lucky that our endocrinologist has diabetes herself. Our daughter enjoys checking in with her and hearing about her experiences. Our doctor has been a wonderful support and role model for our daughter.
Mother
Visiting nurses
We had a visiting nurse. It was incredibly important to have a nurse come the day after we got home because we still really didn’t know what we were doing. Our nurse was a man who had a daughter with diabetes. So he knew all about it. And he probably came at least three or four times. He sat with us and he explained things and we had great visits with him. Another thing that he did was he came and talked to all our neighbors and friends. We had a night where he invited people to learn about it and he spoke. We also had a nutritionist through the visiting nurses association and she came several times. She really helped us take the food plan that had come home with us from the hospital, which was sort of an emergency plan, and then she helped shaped it to the way that we like to eat. She talked to Billy at length about how the current plan was working and how they should change it so she made a couple changes over time.
Mother
Controlling what your child hears
We’ve tried not to make diabetes be a real negative experience for Billy, and this is probably one of our major criticisms with healthcare providers and actually we’ve found this most strongly with the ophthalmologists and our experiences with them. With ophthalmologists, their goal is great. They want people to have good blood sugars because they see the effects that poorly controlled diabetes can have on your vision. However, sharing those kinds of horror stories with children is not really appropriate. There’s no reason to make children afraid. Those things should be shared with the parents and not the young children. Children should just be encouraged, I think to follow the program with you know firm guidance from their parents, but they don’t necessarily need to know about liver problems, kidney problems, amputations, and all of those horrible things that come from unmanaged diabetes. They have plenty of time to learn that as they grow into adults.
Father
Really, my goal is to alert other parents that they can control and help control what their doctors share with their child. You can always find time to meet with the doctor separately while your child waits in the waiting room or goes off with another family member to go do something else. Then you have a more candid meeting with the doctor about what is really going on or to answer any questions. I don’t think those things have to be discussed in front of your child.
Father
Be open
I think being open with the doctors about what’s working for you and your family, both psychologically and physically, is extremely important. I think also that the diabetes nurses and as well as the doctor can also kind of become the mediators between the parent and the child. If you’re having a problem with any particular aspect of diabetes care, I don’t think as a parent you always have to go head to head with your child about it. I think you can say, “Hmm. My child is not doing what I want him to do. He’s not entering his number in his pump every time he does a bolus.” Therefore, it’s hard for us to keep track of whether he’s doing the right thing. Instead of reminding and harassing your child about that, that can be brought up at a meeting with either the nurse or the doctor. The doctor or nurse then can explain things, almost like the police officer, telling the kid why this is important to do why they should try and conform. That can also be solved or strategized about ahead of time by emailing or talking to your doctor before the appointment that way the doctor is kind of on board of what the strategy is for working out these issues with your child.
Father
Be upfront and honest
Just realize that when people are questioning you, and this was hard, they’re not looking at you to make judgment on the types of foods your child is eating, they just want to know what you’re feeding your kid so that they can help you. At the beginning I felt like “Oh my God, they’re judging everything I’m putting in him. Is it good? Is it healthy? Is it organic?” They’re not interested. Be upfront; be honest because the only way that your kid is going to be regulated and tightly maintained is if you are upfront and honest with all the people that you’re working with because what is happening at home is the component that makes it all fit together.
Mother