What happened?
When most families arrive at the hospital, they are emotionally fragile and exhausted. It’s been a long process to get here and they think “Oh my gosh! All we did was go to a doctor’s appointment, and now we’re inpatient in the hospital. What happened?” It’s a very overwhelming experience. Often, the little kids ask “Am I going to die?” since diabetes starts with the sound “die.” So with them, it’s good to provide simple facts. For example, “Here is what’s going to happen” and “Here is what is going on in your body.” Lots of older kids ask, “Well, will I be able to drive with diabetes? What about going to the prom? What about sleepovers and pizza parties with my friends?” These practical issues are the things that I end up focusing a lot of energy on.
The common feelings parents have upon admission are feelings of guilt, anger, and sadness. Also, feeling just so overwhelmed and thinking, “How am I going to do this? How is diabetes going to fit into my life? How is this going to be manageable? What are we going to do when we leave the hospital?” Those kinds of feelings are very, very common, usually throughout the inpatient admission.
Jennifer Rein, LICSW, Licensed Social Worker
Can we ever eat sugar again?
Nutrition is a huge question for families. “So we’re never going to have sugar again!” is the most common phrase that parents say when their child is diagnosed. This is not true at all, so it’s very important to reassure parents that treats can be worked into meal plans, and that this is a wonderful opportunity for the entire family to focus on healthy eating habits. Everybody’s working hard to be healthy nowadays and doing that as a family gives it a little bit of a different focus which is sometimes an easy way to normalize the adjustment to life with diabetes for parents.
Jennifer Rein, LICSW, Licensed Social Worker
What are the long term complications?
I think often times the unstated question from parents is related to the long term complications of diabetes: the potential for visual impairment or blindness, the potential for deteriorating kidney function, and ultimately kidney failure. I think these issues are so prevalent in the press. Magazines, newspaper articles, and TV ads remind us of all the time about the complications of diabetes. So some parents live with those concerns and fears. Some don’t actually talk about them; others will raise those issues with us.
My answer to them is as follows: we have to acknowledge that these issues are real because they are real, but at the same time, I try to put a positive and hopeful spin on it. Yes, patients with diabetes can lose their vision. Yes, patients with diabetes can lose their kidney function. But it is important for the child with diabetes and his/her parent not to feel hopeless and helpless because we have the ability and they have the ability to intervene to do something to minimize that risk. Controlling diabetes well and keeping your blood sugar level near to normal can prevent or at least slow down that process. Science has clearly proven it. If the parent and child invest the effort to really take care of the diabetes well, by establishing discipline, healthy habits, changing their life style, and doing what it takes everyday to manage the diabetes, there will be a reward in terms of prevention of these complications. That is the message I try to convey to patients all the time and I think that that is a hopeful message.
Joseph Wolfsdorf, MD, Associate Chief, Division of Endocrinology
What are the short term complications?
Parents are understandably concerned about the short as well as the long term consequences of diabetes, such as seizures and hypoglycemia as well as the complications of the disease. To address their concerns, I tell parents that they need to be careful about checking the child’s blood sugars and that they must record, monitor, and pay attention to this data. I try to remind parents that kids with and without diabetes need a predictable schedule and this is even more important for kids who have diabetes as their parents learn to “trust” the insulin dosing. I always tell parents that they need to control what they can and then they can learn to build flexibility into the insulin dosing.
Maryanne Quinn, MD, Physician
What about the insulin pump?
Most parents want to know about the pump. They often want to move to a pump quickly because they think the pump must be the best way to treat diabetes because it’s a technological device. The pump has been around for a decade and a half already. It is about the size of a typical large beeper and is programmed to send in insulin at a regular rate that we think matches what the child’s hour to hour needs are. With a pump, you have to still calculate and decide on how much insulin you need to take to correct for high blood sugars or food that you consume. I tell parents we can get just good as control and before the pump was around. It’s still a matter of matching insulin to food but what the pump does is give more flexibility to your schedule.
Christina Luedke, MD, PhD, Physician
Is there a cure on the horizon?
The biggest question the parents ask is if a cure is on the horizon. We don’t have one yet and it’s going to be a while, so we have to do what we can with the insulin. There’s nothing coming up soon that’s going to get the kids off of insulin, so we have to try to find a way to make insulin fit into the child’s life.
Christina Luedke, MD, PhD, Physician
Battling stigma and feelings of guilt
I think one of the most common things parents are worried about is that their child is going to be labeled “the diabetic kid”, and that this is going to follow them. They worry that it’s always going to be, “Little Tommy has diabetes” and not “Little Tommy’s a great soccer player or saxophone player”…that there’s always going to be some stigma that follows them around. Also, I think parents also feel just so guilty and responsible and want to find the one sweet or the one candy bar or soda that pushed to blame for diabetes. It’s important to continue to provide reassurance to families that this is not in fact true.
Jennifer Rein, LICSW, Licensed Social Worker