Pediatric Diabetes in the Trenches

April 15, 2015

I have been caring for patients with diabetes since 1979. I worked with the very first insulin pump at Yale on the Children’s Clinical Research Center. I tell you this so you know this is not my first rodeo.

I have been caring for patients with diabetes since 1979. I worked with the very first insulin pump at Yale on the Children’s Clinical Research Center. I tell you this so you know this is not my first rodeo.

I love caring for patients with diabetes and helping them to achieve all of their goals. It is a hard road, but so rewarding. Most of my patients are doing extremely well and the average HbA1c level is 7.13% (as measured by DCA 2000).  HbA1c is the measure that tells us what the diabetes control has been over the past few months. This is the lowest mean HbA1c in the world. Studies like the Hvidøre Study that have looked at 17 pediatric diabetes centers around the world, could only achieve a mean HbA1c of 8.3-8.5%!  The younger patients usually do the best. The teens and college patients either do really well or really poorly.

It is extremely frustrating when a patient cannot be reached. By this I mean that he/she is not checking blood sugar levels as prescribed or taking insulin when he/she should. I think that there must be a way to reach them in order to prevent the heartache of retinopathy, neuropathy, and nephropathy. When I see these complications in patients, it makes me angry. Knowing that these complications could be prevented “if only” they checked blood sugar levels and took insulin as needed, makes me sad as well. How to impress the importance on the patients who refuse to do the necessary care is a constant challenge.

There is the possibility that all patients cannot be “reached.” Perhaps they must come to the conclusion on their own but many times it is too late to help them. They reach the conclusion that they should have done more glucose monitoring and taken insulin as prescribed only after they have microalbuminuria, retinopathy, or painful neuropathy. Since I know that this can be avoided, it is a constant challenge to get the patient to reach this conclusion before symptoms occur. Is it okay that most patients do well?  Is that enough?  How much more can I do to draw them in? These are the questions that are foremost in my mind.

We have amazing technology now that can help patients achieve HbA1c and glucose goals yet many refuse to use them. They have the right to refuse, of course. I try cajoling, begging, reminding them of all advantages and am only successful in a few tough cases. So if 20% of my patients are not achieving HbA1c goals, how do I influence them otherwise?  Maybe it is not possible but I must continue to try. Maybe at some point, something will click. This is my challenge as well as my job. I must continue to be creative in how I approach these patients. I need to find the “thing” that will inspire them to do what they need to do. Trying to be positive is the first choice but when this does not work, pointing out the negatives seems to be the only choice.

I simply cannot be satisfied with a 20% failure rate. So every single day, I continue to try new ways to reach those patients that seem to be unreachable. I have had some success with this and every now and then someone “sees the light” and begins to realize that taking care of diabetes makes them feel better and will prolong their life. This is when I really feel terrific! It is what keeps me doing what I do day after day. The 80% that do very well also need encouragement as they, too, become frustrated. They inspire me every single day and give me the energy to work on that other 20%. Diabetes is a frustrating chronic disease that can be managed very well with the effort that each family puts into it. Children can do everything that they want and need to do. Diabetes does not need to hold anyone back from anything that they desire. Most of these patients play sports and participate in many clubs and activities. They become very successful and productive adults.

Overall, I view helping patients manage diabetes as a coaching position. If I am a good coach, I find the positive side of every patient and find their inspiration. I work on this constantly; trying to find that thing that motivates each and every person with diabetes.

At the end of the day, I need to know that I did the best that I could and gave every patient the tools that they need to have a successful and happy life. I am available to them by phone, fax and e-mail. If they need me, they know how to reach me.

This is my life “in the trenches.”

Disclosures:

Ms Ahern is manager of the Danbury Pediatric Diabetes Program in Danbury, Connecticut. She has published over 40 articles in diabetes journals and also presented research studies at national and local meetings.