After the Diabetes Diagnosis: Top 10 Concerns, Part 1
I have been transplanted Since April 2008, I have served as the physician expert for the DiabeTeens website. My goals were to provide information in regard to diabetes (primarily type 1) that pertained to teens and young adults. I plan to continue to provide relevant and insightful information to teens, young adults and parents who care for children of all age groups with type 1 diabetes. I truly welcome comments or questions in regard to any of my blogs.
My past blogs have focused primarily on teens and their families that have had some experience managing diabetes on a day-to-day basis. Today I would like to go back to your day of diagnosis (nearly every teen and parent remembers the exact day of the diagnosis) and discuss how to survive the first few days, weeks, and then months. How does one move forward through the labyrinth of emotional upheaval, steep learning curve of diabetes pathophysiology (advanced placement biology, according to one of my teen patients), and the world of technology?
Dealing with the diagnosis. The involved emotions are shock, denial, anger, and acceptance. Shock is the first emotion to display on the face of either parent or teen when informed of a diabetes diagnosis. I am often amazed that we can actually teach families how to manage blood glucose monitoring, insulin injections and nutrition management in the short time we have during either the hospitalization or outpatient visit. It is stressful not only for families, but for the diabetes team. We know how hard it is to focus on learning how to draw up insulin, let alone deal with emotional turmoil that is in your head. Be easy on yourself and take the time you need to let everything sink in. Ask for support. Your physicians, nurses, dieticians, social workers, and psychologists are there to guide you. As you and your family work through the other stages (not necessarily in order), please talk to us about how you are feeling in addition to reporting your blood sugars. And, if necessary, we will find any additional support you need. Please do not blame yourself or family members as to why you developed diabetes. (Parents: if you are reading this, I mean you too.) Remember, you have to be born with the genetic tendency to contract diabetes and be exposed to another hit (virus, etc.) to trigger the destruction of the pancreas.
Where do I go for the best diabetes care? Choose the appropriate Diabetes Program after initial diagnosis. It is essential that the program include a physician experienced in type 1 diabetes management, a diabetes nurse educator, and a dietician. It also is extremely helpful to have a dedicated psychosocial team. Most diabetes teams have a relationship with a hospital that is comfortable managing children and teens with diabetes. This is very important (see Diabetes and hospitalizations). If you are not certain, check with your local Juvenile Diabetes Research Foundation or Children with Diabetes chapters, as well as the American Diabetes Association. The diabetes program at Children’s National Medical Center is an ADA Recognized Program.
How do I learn all that stuff that is being thrown at us? Face it, most of you did not study biology in graduate school or go to medical school (yet). There is a very steep learning curve to understand these medical terms. Read the materials that your Diabetes team provides for you and your family. The materials are written so that everyone can understand the meaning behind hyperglycemia, hypoglycemia, diabetic ketoacidosis, etc. We use The Pink Panther as our textbook along with supplemental materials written by our team or others that we trust. Do NOT trust information on random web sites without discussing it with your diabetes team. Some web sites are excellent and provide up-to-date and correct information; others are incorrect. Read the latest information provided by respected diabetes organizations. Go to conferences (such as Children with Diabetes). Ask your diabetes team to interpret scientific literature if you do not understand the results of the study and how it might apply to you directly. How can you be expected to learn all this stuff in a week?
How do I interact with my diabetes team? How do I get help? Most diabetes programs teach skills initially at diagnosis and then shortly afterwards, in a course called concepts, which explains why you are doing what you are doing. Be prepared and ask questions. Do not leave until you have had those nagging questions answered to your satisfaction. I also would suggest that you schedule your next follow-up appointment so that you will be seen in a timely manner. At your appointments, prepare checklists in advance so that you know what you want to ask your diabetes team. And always call the team with concerns and questions!
Do I keep this new diagnosis to myself? Tell others! This is no time to keep the news to yourself. Talk to your other family members, friends, teachers, and coaches. They need to know so they can help you if necessary. Your friends cared about you before you developed diabetes and will continue to care for you afterwards. They will watch your back. Just like you will continue to watch theirs!
Stay tuned: Next week, Concerns 6-10.
Fran Cogen, M.D., C.D.E., is the director of the Childhood and Adolescent Diabetes Program at Children’s National Health System. She wrote about diabetes for HealthCentral.