Taking on the waterfall of information that comes with getting diagnosed with type 1 diabetes
Laura Groeneweg reflects on wading through her son's diagnosis with this chronic, autoimmune condition
Three-year-olds are curious by nature. So when my son Asher and I were flying to Chicago for my grandfather’s 90th birthday party and he had to go to the bathroom multiple times, I thought he was just fascinated by the airplane bathroom.
At my parents’ house, he was drinking water constantly and flooding the bed, despite wearing a pull-up. But I chalked that up to traveling and being out of sorts. And when it kept happening when we returned home and he started having tantrums, I thought, “Well, he’s three.” I figured that’s just what three-year-olds do.
Then a couple of weeks later, my mother-in-law was at our house to babysit. As I was rushing out the door for work she said, “You know, the excessive water drinking is often the first sign of diabetes.”
Searching for information about diabetes in children
After my mother-in-law’s comment, I did what any panicked mom would do. I Googled.
I did a fantastic amount of research, but what I read didn’t convince me that Asher must have diabetes. He wasn’t always in a bad mood. Sure, he was getting more tired when he was out playing, but he was still active.
Laura Groeneweg and her son, Asher
I started to track just how much water he was drinking and how much he was using the bathroom. The day before I took Asher into Park Nicollet Clinic - St. Louis Park to rule out diabetes, he drank 13 cups of water. He went to the bathroom 15 times. Yet all the while, he was in a great mood.
“What else could it be?” I wondered. Was it just a phase?
I thought the blood draw was for sure going to be the most traumatic part of all of this. I felt like the needle was the size of his little arm and, as expected, he was squirmy. But we got it done, and the clinician sent us home saying someone would call us later.
While our regular pediatrician, Dr. Stacy Walters, hadn’t been available for the clinic visit, she was the one who called me with Asher’s test results.
Asher’s glucose level was 781, she explained, and 200 is the highest they want to see in adults. She didn’t say, “He has diabetes.” She said he needed insulin pronto. We needed to return to the clinic right away.
Seeing Asher’s care team go above and beyond
Before Dr. Walters called me, she had spoken with her colleague, Dr. Amy Criego, a pediatric endocrinologist and diabetes expert, for guidance. Dr. Walters knew we would need expertise from a specialist, and she called Dr. Criego to engage her in Asher’s care right away.
I didn’t know it then, but most patients with a glucose level of 781 end up in the emergency room. Drs. Criego and Walters, however, wanted me to avoid the hospital at all costs. It was February, the flu was in full force, and I was 24-weeks pregnant.
So Dr. Criego offered to meet us at the St. Louis Park clinic. It was already after 5 p.m. and she had worked all day seeing patients at Park Nicollet Clinic - Burnsville. She would be driving almost 20 miles through rush-hour traffic to meet us after an already-long day. The thoughtfulness of the offer – and her selflessness – astounded me.
Standing under a waterfall of new information pounding down
When I took Dr. Walter’s call, I was in the middle of making dinner for Asher and his six-year-old sister, Jade. I had been talking to my friend, Jessica, on the other line and by the time I switched back to her, I was sobbing. Jessica asked if she could come to the appointment with me. Her father has diabetes.
Laura and Asher at an appointment with Park Nicollet pediatric endocrinologist Amy Criego, MD.
During the appointment, I struggled to follow everything that was going on. I felt like I was standing under a waterfall of information, and I had a funnel that could hardly catch any of it. Jessica was asking Dr. Criego thoughtful, important and valid questions. I just had one: How do I get my baby to be okay?
The answer to my question in that particular moment was that Asher needed a shot. He was irrational, cranky and active. It was a hard-fought shot, but we got him the insulin he desperately needed.
By the time we left the clinic, everything had closed. Dr. Criego had actually needed to prop the door open with a fan while we were there so we wouldn’t lock ourselves out of the room. On top of that Burnsville-to-St. Louis Park rush hour drive she had made, she had spent over an hour and a half with a mess of a mom, an exhausted three-year-old and a godsend of a friend. So when she told me to meet her back at the clinic the next day at 9 a.m., I was in awe. I was so relieved and tremendously grateful.
Adjusting to a new reality
I spent the next several days with a diabetes nurse educator and nutritionist from Park Nicollet Pediatric Endocrinology to learn how to care for a child with type 1 diabetes. That first week, especially, was rough.
My poor son was a mess between the finger pokes, the shots and the anxious mom. At night, I would need to wake him up to check his glucose levels. No one likes disrupted sleep, and a three-year-old is no different. During the day, it felt like we lived at the clinic and that I was gaining a new best friend in Dr. Criego. Through her guidance and the training sessions, my funnel was getting slightly larger.
Since her son’s journey with type 1 diabetes began, Laura says like she feels like she's found a new best friend in Dr. Criego.
I was becoming more equipped to take in the flood of information and follow what it all meant for us. I was getting educated on how important constantly pricking the finger of my squirmy three-year-old was. I learned that when people with type 1 diabetes first start taking insulin, there’s a risk that they might become hypoglycemic from having too much insulin in their blood. Hypoglycemia can lead to seizures or coma.
But 24/7 finger pricks quickly were becoming unbearable for both me and Asher. Thankfully, Dr. Criego suggested we use a continuous glucose monitor (CGM) to make our new reality easier.
A CGM is a way to measure glucose levels in real-time throughout the day and night. A tiny electrode (or sensor) was inserted into the back of Asher’s arm. It now sends information via wireless radio frequency to a monitoring and display device for us. The CGM updates every five minutes, so there are 288 checks in 24 hours. It alerts me if Asher’s sugar level drops below a certain threshold, so that I can treat it promptly. This seems to happen often in the middle of the night. But I’ll take disrupted sleep over a hospital visit (or worse) any day. We change the CGM’s sensor once a week, and the device also helps Dr. Criego make dosage estimates because it gives her more data.
To date, we’ve been able to keep Asher’s blood sugar in range thanks to the CGM and the guidance from Dr. Criego and the Park Nicollet team. With Asher spending more “time in range” with his blood sugar, the risk for complications related to diabetes over the course of his life is reduced.
Overall, Asher has adjusted just fine to having the CGM. He struggles a bit when we have to replace the sensor, but once it’s inserted he hardly notices it. I certainly do, though. It gives me the information I need to keep my son safe – and I’m so, so grateful for that all the time.
I’ve also realized how lucky we were that Asher never ended up in the hospital. From listening to other parents’ stories about their children’s diabetes diagnoses, it seems as if every child who has type 1 diabetes finds out after a scary ER or hospital visit. That even includes Coco the monkey, Disney’s first character with type 1 diabetes.
We’re so fortunate to have been in great hands since the start of this journey, with my new best friend in Pediatric Endocrinology at Park Nicollet and the International Diabetes Center (IDC). (You’re still a close second, Jessica!) We’ve settled into the reality of having a child with type 1 diabetes and now, all we need to do is have that new baby and make the two-to-three-kids transition. We’ve got this! Bring it. Though with that said, we’d welcome advancements or even a cure for type 1 diabetes, so keep up the research, IDC!
Laura Groeneweg is a clinical social worker who enjoys spending time with her husband Jeremy and her children Asher and Jade. She’s looking forward to the imminent arrival of a baby girl.