A Common Bond: Sharing Diabetes Diagnosis Tales
Get a group of women together who have given birth - particularly when in the company of an expectant mother, and more likely than not the topic of labor and delivery stories will come up. The tougher and longer the labor, then the more impressed are the listeners of the teller.
A similar exchange of stories occurs when a group of parents who all have a Type 1 child get together. Instead of labor and delivery, the topic is about the often circuitous and frightening road parents took to a diagnosis of Type 1 Diabetes. The higher the blood glucose levels at diagnosis, the more in awe we are (at least I am). Parents aren’t the only ones who share stories - Type 1s likewise will tell each other about how they came to be diagnosed. These stories typically have common threads: what were the symptoms experienced and for how long, how aware were they of diabetes and its symptoms, and unfortunately, there are some horror stories of medical practitioners that just wouldn’t listen.
Our - more specifically my son’s - diagnosis story is benign and lacks any type of “wow” details. We fortunately were aware of the symptoms of diabetes, my son displayed classic symptoms, and my primary care doctor listened to me and my son and tested accordingly.
In my travels in the World of Diabetes during the past year, I’ve listened to tens and tens of these diagnosis stories, and many are filled with perseverance, faith in what they believed was happening to them or their child, and sometimes even a little luck.
I wanted to share some of the stories that struck a chord with me, for they further solidified for me how much we have to learn from each other in the diabetes community, and how much more we need to educate the wider community in general about this disease.
I met one mom whose fourteen-year-old son ended up in the ICU DKA with a BG of 1600. She readily admits that she was unfamiliar with the symptoms of diabetes and missed early signs - a re-emergence of night time accidents, vomiting, and general malaise - because she herself had been knocked down for nearly two weeks with a bad case of flu followed by a strep throat infection. She naturally thought that his issues could be attributed to him coming down with the same virus that had sidelined her. Yet his flu symptoms didn’t progress like hers had, instead he starting slurring his words and had difficulty walking straight when leaving the bed to use the bathroom. A trip to the ER resulted in the T1 diagnosis.
There is the story of a three-year-old whose mom admitted that she didn’t look like she felt well before they left for a big family vacation. Her symptoms included tiredness complete with deep dark circles under her eyes. The young girl got progressively worse during the trip, including some nausea and unquenchable thirst - so much so that the girl would get out of bed in the middle of the night to drink the water that had collected from the melted ice cubes in the ice bucket. Upon the family’s return, their pediatrician quickly saw the girl, made the initial diagnosis and admitted her to the hospital for treatment.
I’ve met several parents with children who have been diagnosed as infants or toddlers. Their stories, sadly, carry a common theme: medical practitioners who wouldn’t listen. One mother talked of her ten-month-old son who drank every one of his bottles voraciously and then soaked through each of his diapers. When she inquired with her pediatrician, he told her that it was not uncommon for a child to do this. The mother researched her baby’s symptoms and asked his doctor if diabetes was possible. The physician’s response was that the child was too young and the boy was treated with antibiotics for a possible infection. Even when she took her son to the ER with convulsions, it took the emergency medical team some time to test his BG level. “Once they did,” she confided, “he instantly was swarmed with doctors…I literally couldn’t get near him.”
Along a similar and sad story line was the little toddler who was so thirsty that she would crawl out of bed at night and drink out of the toilet. Her pediatrician recommended psychological therapy.
This is not meant to beat up on parents or medical practitioners. Rather this post is meant to demonstrate how we, as a part of the diabetes community, need to raise the awareness of diabetes and its symptoms to all populations, medical or not. Diabetes, both Type 1 and Type 2, are not going away in the near future.
The faster we diagnose, the faster people of all ages will be on their way back to health and taking the steps to manage the condition.
Beth wrote for HealthCentral as a patient expert for Diabetes.