“But she is young and she is thin.” “Can she have cake at the birthday party?” Yes, she is young and thin. And yes, she can have cake. I am not shocked at the questions and stereotypes, or the judgmental looks that come when someone learns your child has diabetes. I’d be asking the same questions, if it hadn’t become part of my life.
November is Diabetes Awareness month. Diabetes is something I never thought I’d need to think about. I’m healthy, I eat right, and there is no diabetes in my family. However, I, like most people, knew only the stereotypes for Type Two diabetes. I want to share my family’s story so that the stereotypes don’t cause others to overlook the symptoms of the less common diabetes.
Back in September 2013, my daughter started 5th grade. At her routine physical, her doctor didn’t think anything of her lack of weight gain, while getting taller. She was an active kid and it was summertime.
By the middle of September, my daughter was constantly thirsty, irritable, and famished. A parent never wants to believe their child could be seriously ill, so I rationalized away symptoms for a few weeks. I rationalized that her hunger was due to growth. Her thirst was due to her stubborn refusal to drink more water. Her irritability and headaches were due to hunger and thirst. But when she had visibly lost weight and was running to the bathroom all the time, I prepared myself for the worst.
I was worried about taking her to the doctor because my kid had been held down for every vaccination she had ever had, and she had never had blood drawn. But the only test the doctor ran was an inexpensive, in-office urine test. We were in the doctor’s office for no more than 15 minutes, when the pediatrician told me to immediately take my daughter to the ER at Children’s Hospital.
When I look back at her school photos taken that week, I feel like a monster who should have known better. She seems so gaunt. But her endocrinologist assures me that most parents rationalize the symptoms until the weight loss starts. And many kids end up diagnosed after their body has shut down.
My daughter was admitted to the ER, and given fluids and insulin to bring her blood sugars down. I wasn’t given a diagnosis at that time. They ran more tests. Her organs were fine; she was in the clear. But the presences of an antibody confirmed that it was Type One diabetes. An antibody? Thus began my education on the other diabetes.
As of 2012, 21 million Americas were living with a diagnosis of diabetes. Type One diabetics makes up 5% of these cases. Type One diabetes used to be called Juvenile Diabetes. Type One can hit people at any time in their life, hence the name change. Type One is an autoimmune disorder. Eating too much sugar does not cause it. No lifestyle changes can prevent it. The immune system attacks the insulin producing cells in the pancreas. Without insulin your body can’t turn food into energy or store it as fat. This is why Type One diabetics are losing weight when diagnosed.
My daughter was in the hospital for 3 days. This time was needed to educate my husband and me on how to regulate our daughter’s sugars and give her shots. We were given text books and a dozen prescriptions to fill. New patients have to learn how to give shots, and check their blood sugars. Acute low blood sugars from too much insulin can cause seizures and death. For parents or adult patients, this means checking blood sugars up to ten times a day, and at least two or three times at night. If blood sugars are too high, it can mean administering shots, even when you are exhausted. If a child is sick and can’t keep food down, it further complicates things. It is a lot to take in all at once. And while you are exhausted, you also have to manage all the medications and supplies, and fight with an insurance industry that automatically applies Type Two diabetic needs to a Type One diagnosis. (I in no way mean to lessen the seriousness of Type Two. The two types are managed differently. Type Two is more prevalent. And many people, whose job is to make medical decisions, don’t know the difference. It can be frustrating when you are working on two hours of sleep.)
On the second day in the hospital, my daughter asked when the shots were going to end. “How long with these last?” We were so concerned with educating ourselves, that we hadn’t explained the whole situation to our daughter. We thought she understood since she was in the room during our discussions with the doctor. But she thought she had something that would go away, like every illness she’d ever had.
Back then I could barely remember to breathe and put one foot in front of the other. I certainly hadn’t come to grips with the fact that our daughter was going to need shots, several times a day, every day, for the rest of her life, to stay alive. All I knew of Type One was that my grandfather died of it, when my father was a child, and Shelby died of it in “Steel Magnolias.” Back then I had no idea life could be normal again. So in telling my daughter her reality, I had to face her reality too. I broke down in front of her.
Our social worker advised us that the best way to handle this diagnosis is to always be honest. Don’t sugar coat the risks, even to kids, and never focus on “cures” or hopes that it will go away. Like with most things in life, fear comes from the unknown, not in the truth. With the internet one can find loads of misinformation and fake cures.
Our daughter came to grips with her diagnosis before her parents did. In a few months, it had become normal for her. She learned quickly she could have substitutes for all her favorite foods and also learned to build real sugar into her day. I could not believe this was my kid. She never complained about her more restrictive diet or the shots. Her attitude is “Everyone has something, mine is insulin and shots. Others have to manage deadly food allergies, or a physically disability. Some kids can’t even have real ice cream with milk!”
Luckily our pediatric nurse was fabulous and spoke with our daughter about all the patients she had known over the years. And we met a young mother who was visiting a friend in the hospital. She happily shared that she was diagnosed with Type One at 8 years old, and was now 26, with two kids. Since then we have met dozens of amazing people who live normal lives with Type One, and have read about Olympic athletes and entertainers, who you would never guess live with this.
It took me a few years to fully come to grips with this, however. I became a Doomsday prepper when we brought her home from the hospital. The running nightmare in my mind is, “What if a tragedy or natural disaster stops all insulin production?” Finding insulin will be the only reason I leave a bomb shelter during a zombie apocalypse.
After two months, my husband and I realized that we had not gone out in public as a family since the diagnosis. We had to learn how to go out to eat again. We had to learn how to go out in public, post 9-11 with syringes, insulin vials, test kits, and extra sugar. Soon after that we had to learn how to navigate museums and landmarks with long lines or security searches.
It is exhausting at first. Luckily, after learning how to manually regulate the condition, patients can use continuous glucose monitors to build in safety, and pumps to administer insulin without shots. With the security of these devices and some time, I eventually let my family leave the bomb shelter. We got onto planes and managed her diabetes in other countries, without the security of her doctors or local pharmacy nearby. It was terrifying, but worth it.
After three years, the challenge we still face is balancing the attention from mom and dad and kids, with a chronic illness. It unfortunately took some time for us to step back and remember the needs of our other daughter, rather than just her sister’s immediate medical needs. Our daughter with Type One is an identical twin, so we know her sister carries the gene. Our other daughter lives with the knowledge that she has a 50% chance of developing Type One. She and I are checked for the antibody annually.
The reason I tell this story is because I still worry about what would have happened if I waited even one more day to take my daughter to the doctor. I hear of many cases where an inexpensive urine test at a physical, were it routine for kids, would have prevented weeks in the hospital or even death. But I also want newly diagnosed Type One patients to know that it can be managed and there is support.
Below are the symptoms and a link to JDRF for more information. JDRF has been a tremendous source of information and support for our family over the last three years.
T1D Warning signs – https://www.jdrf.org/t1d-resources/type-1-diabetes-warning-signs/
Symptoms may occur suddenly and can include:
- Extreme thirst
- Frequent urination
- Drowsiness or lethargy
- Increased appetite
- Sudden weight loss
- Sudden vision changes
- Sugar in the urine
- Fruity, sweet or wine-like odor on breath
- Heavy or labored breathing
- Stupor or unconsciousness