Improved diabetes treatments and education
The insulins available now are amazing. In the past they were made with pork and beef. They weren’t as well timed and they came from animals. The insulins available now are synthetic, very well made, and have great precise timing. And the education is tremendous now. In the old days, people with diabetes didn’t have a lot of diabetes education. They got one shot once a day. They were seen once or twice a year, and there were complications and shorter lives. Now, these kids are living really full lives. We’re watching kidneys and we’re watching eyes, so that there are a lot less complications.

Maureen Powers, RN, DNE, Registered Nurse


Balancing food and insulin
Ideally, taking care of one’s diabetes today, even using an insulin pump, requires a minimum of four injections of insulin a day and checking blood sugar levels 4, 5, or 6 times a day. It also requires knowing the composition of the food one is eating and estimating, as accurately as possible, the amount of carbohydrates in each meal and snack. Then one needs to deliver the precise amount of insulin to match the carbohydrates. We’re in a place now were we can really balance food and insulin in a scientific way and with the expectation of blood glucose levels being near to normal, but it still requires a considerable amount of patient involvement.

Joseph Wolfsdorf, MD, Associate Chief, Division of Endocrinology


Immediate life changes
The first thing that children with diabetes and their parents have to understand and come to terms with is that the rest of the child’s life that child is going to receive insulin. It’s given by injection so there is this confrontation with the reality that from this day forward, I’m going to have to give myself an injection multiple times daily. Now, an insulin pump is a form of an injection, the difference being that the needle stays under the skin and is replaced every two or three days. Second thing that is absolutely critical to maintaining good blood sugar control is measuring blood sugars frequently. Again, the technology has improved tremendously. The needles are extremely fine, sharp and usually not painful. A little discomfort, but not in real pain for the most part. Meters that measure blood sugar require only a tiny amount of blood, not a huge drop of blood like years ago. They give a reading after a few seconds so you don’t have to wait a few minutes. Still, it’s a nuisance and nobody likes to do it. Yet, you have to do it multiple times daily in order to maintain blood sugar control.

I’m emphasizing what I call the “pricks” and the “pocks.” That’s what people first have to get used to. Most people do get used to it and it becomes a way of life. After some period of time most people, not everybody, get over the fear of the needles and pocks and it becomes the least difficult part of managing diabetes.

Joseph Wolfsdorf, MD, Associate Chief, Division of Endocrinology


Blood glucose checks, not tests
When working with parents of newly diagnosed children, I often encourage parents to use the words “blood glucose checks” rather than “blood glucose tests”. In school, children associate good work with a good test score and bad work with a poor test score. Diabetes is not that simple. An out of range number does not necessarily indicate bad work. A child could be doing everything “good” and he/she may still have a number that is too high or too low. It is important to not give too much meaning to each individual number. Instead of being upset, it is essential to help the child develop problem solving skills to calmly respond to the number.

Lauren Mednick, PhD, Clinical Psychologist


The child’s input is essential
The types of treatment we recommend to families depend on the child’s developmental level as well as on the child’s and parent’s acceptance. If I am treating a toddler with diabetes, the parents are managing the child’s diabetes and are responsible for giving the child multiple injections or pump boluses throughout the day. However, as the child gets older, the child’s input is essential. I’ve even had some young patients who have refused to wear their insulin pumps and tear them out.

Maryanne Quinn, MD, Physician


Giving your child ownership over diabetes treatment
Help your child to identify what it is they don’t like about the tasks they are being asked to perform. These are tasks that create more work for the child, so it is perfectly ok that he/she doesn’t like it! Acknowledge this with your child, say that he/she needs to do it to be healthy, and then move on. This, of course, is easier said than done. Some things that work for parents are star charts or little rewards that offer simple, immediate gratification for the child. It is also important for the child to have ownership over their treatment. If your child has to perform a blood check, have him or her pick which finger to prick. It’s important for the child to have ownership, or control, over some of the decisions.

Maryanne Quinn, MD, Physician


Finding the right treatment
The insulin pump is an advanced method of caring for diabetes. Many families have the perception that the pump makes diabetes care “easier.” It’s a treatment method that is most similar to the way the pancreas works in a person who is not diagnosed with Type I diabetes. It is important to remember that the pump is a choice it works well for some families, and it doesn’t work as well for others. Sometimes, families find the pump to be too much. They feel worried because they’re dependent on a machine. I’ve found that some teenagers want to return to injections when they go off to college. Often, they don’t want the pump because they don’t want something that’s hooked onto them that their new friends can see. They want a clean, fresh start, and are willing to go to the bathroom and do injections privately so that nobody is aware of their diagnosis.

Also, many teenagers like the insulin pen because it’s more convenient than a syringe. With the pen, you just use a dial rather than measuring through a syringe. Kids and parents tend to like that because it’s easier to see and measure. Overall, it really just depends on what works best for the family. Our medical team does a fantastic job working with families to find what treatment best matches them, and then social workers come in to support the changes that are going on: “You can do it! This is going to be fine and we’re here to support you.”

Jennifer Rein, LICSW, Licensed Social Worker


Choosing the pump
The kids think that the pump is going to be much easier, but it’s not; this is as much work or more work. There are more risks involved and that’s one of the big concerns. We are very careful about making sure we’ve got a situation where we are sure that monitoring is going to be occurring because if you aren’t monitoring and watching very carefully what is going on, if the pump fails, you’re much more likely to get sick quickly and mechanical devices can fail. So we are very selective and do not jump to give a pump to everyone. Kids can get very sick if we don’t help choose those families that for which it’s really going to be effective and useful.

In addition, the pump is a very individual thing. The person who has to live with it is the one who has to decide if they want this thing attached to them all the time. If a child doesn’t want that, I would never force it on the child. No matter how much it may help them with a flexible schedule or the parents may feel it would be good for them; I would never force that on a child because it’s not going to work for them. They are going to be unhappy, and our goal is not to try to make the child unhappy, we are trying to make it livable.

Christina Luedke, MD, PhD, Physician


Good sugars versus good results
Around the time that my daughter was diagnosed with diabetes at age 11 in 1983 there was a shift developing: the child with diabetes should be as independent as possible. For me, being a diabetologist as well as a parent of a child with diabetes, it was always a balancing act. I never felt entitled to take over my daughter’s blood glucose testing. She would ask for help and I would make suggestions, but I tried not to intrude, because I had seen the fall out from parents who see “good sugars and bad sugars” as good results and bad results. Diabetes management isn’t an exact science and it can all too easily become a “blame game.” Children and teens need support, not just criticism.

Norman Spack, MD, Physician


Transitioning from dependence to independence
Transitioning from dependence to independence with diabetes self care activities should occur over a long period of time. For example, most school age children can recognize signs of high or low blood sugar and monitor blood glucose levels, but will need assistance to determine the amount of insulin needed and accurately drawing up the dose in a syringe. More importantly, while adolescents have the motor and cognitive skills to perform all diabetes self care activities, this is a time when the need for peer acceptance, risk taking behaviors, and rebellion against authority all occur more often. Therefore, adolescents must be allowed a gradual independence that includes continued supervision of diabetes self care tasks.

Lauren Mednick, PhD, Clinical Psychologist

The Evolution of Diabetes Care 


Evolving diabetes care
Our methods of treating diabetes today are the same as they were 30 years ago and yet at the same time vastly different. So what’s the same? The same is with type I diabetes, which accounts for the majority of children and adolescents with diabetes. Diabetes type I is a disorder in which the pancreas no longer makes insulin, so you have to replace insulin and you have to monitor the effects.

Thirty years ago, we used one or two dosages of insulin a day. We encouraged patients to have a structured schedule of eating and we encouraged them not to eat sweets and sugar. The only way we had to monitor the effects of treatment was to measure the sugar in the urine. It was very crude and very inadequate.

Now, we have evolved to the point where we can replace insulin in a matter that does not absolutely replicate, but simulates or mimics the way in which the pancreas normally produces insulin. We know a lot more about nutrition and its impact on blood sugar and other aspects of human metabolism. We also have the benefit of very reliable methods of measuring the blood sugar. In fact, what we have done is gone from a crude system of insulin replacement that did not in any way reproduce normal physiology to a system that we can almost reproduce normal physiology. The amount of time and effort one uses to devote to the care of diabetes 30 years ago versus now is completely different.

Joseph Wolfsdorf, MD, Associate Chief, Division of Endocrinology


Modern diabetes care
I have taken care of children with diabetes for over 30 years, and it seems like with each year that goes by, I have a greater appreciation for people who live with this chronic disease. The burden is enormous and I think only those who live with it can really know what it is like. As someone who does not personally have diabetes, I rely on stories that patients and parents tell me. I try to imagine what having that kind of life is like because I think living it and imagining it are two different things. I don’t think diabetes can ever be underestimated. I think that modern diabetes care has done two things. It has tremendously improved the long term outcome of patients with diabetes in terms of the prognosis, but it’s also added to the complexity of management. So I have to say that it’s a blessing, but it’s a mixed blessing.

Joseph Wolfsdorf, MD, Associate Chief, Division of Endocrinology