A dynamic diabetes care approach from the beginning . . .
My son was diagnosed with type 1 diabetes at the age of 6, just following kindergarten graduation. I had seen the warning signs of type 1 from awareness posts a friend had shared the year before as part of Project Blue November. I had also read the story of the little girl from St. George, Utah, named Kycie, which was just down the road from where my parents lived at the time. So, because of that I was pretty sure my son Joshua had type 1 diabetes before we even brought him in.
I remember sitting in my living room the night before, having made Joshua an appointment at our local clinic for the next day trying to think and plan what was going to happen and trying to talk myself out of the reality. As a mother, my worst fear was always that my children would have some serious illness and I would somehow miss it, or fail to recognize it. The next day we took him in, his symptoms had continued to progress, he was drinking water non-stop, going to the bathroom every 15 minutes and very lethargic. We brought him in, having just been to the same doctor two days prior, for poison ivy (where he was prescribed oral steroids that contributed to his elevated blood sugar.
The steroids actually resulted in a quicker diagnosis. It enabled us to see his type 1 diabetes faster. Our doctor was originally thinking a urinary tract infection based on his symptoms. We asked if it could be diabetes. Our doctor wasn’t convinced the right symptoms were there, but still agreed to do a blood sugar meter test before sending us for a formal blood draw. The meter results said 499 mg/dL.
I remember looking at the nurse. I had no idea what that number meant at the time. She quietly signaled that wasn’t good. I immediately started to cry, but my husband quickly cautioned me to remain calm in front of the kids. The doctor came back in and said he wanted us to go straight to the ER. We chose Scott & White McLane Children's Hospital in Temple. It was the best decision we could have made.
Upon arrival to the ER they took us back immediately. After a while a doctor came in and asked us how long he had diabetes, we looked at him and said “are you telling us for sure he has diabetes?” No one had officially said it yet. We were promptly transferred up to the PICU for management of diabetic ketoacidosis (DKA). By then it was getting late. I remember someone telling us that once were we settled in, the on-call endocrinologist would likely be stopping by just to meet with us later.
Around 9PM that night, Dr. Ponder came in just to meet us. Most importantly, he was there to assure us that everything would be ok. His style is more like a therapist or counselor, encouraging his patients and their families. That night he left an e-book with us to read “A Type One Diabetes Guide to the Universe”, written by his good friend and fellow person with diabetes, Joe Solowiejczyk.
I spent most of a sleepless night reading Joe's book to get a better understanding of what this diagnosis would mean for us. The next day we met with our CDE from Dr. Ponder's office to begin our training.
From the very beginning we felt like we wanted more information. Finger sticks before the meals and 2 hours afterwards didn’t seem like enough. We wanted to know what was going on between those two points in time. I always kept careful logs those first 6 weeks after Joshua's diagnosis wanting to gather more data to understand how we could better manage this mysterious disease. I remember almost running out of test strips that first month because I was testing so often, trying hard to find patterns. At least to better prevent spikes and lows.
We started the process at our one month follow up appointment to obtain a continuous glucose monitor (CGM). We felt we could benefit from the added layers of data to better manage each number we got. The data we got from a meter was a decision point for us. We craved more.
At 6 weeks in we started on our CGM system. It’s been wonderful. Having all that extra information helps us see which foods stayed in his system for a longer time and how we could more accurately dose based off this information. We now watch his blood sugar trend line and make decisions based off what direction the line is trending.
I'm in several type 1 groups on social media. I see different styles of diabetes management. Frankly, the dynamic approach just makes more sense to us. We have both read the book Sugar Surfing™. But even before we had read it, that was how we were being trained to manage diabetes from Dr. Ponder himself and our CDE.
When he started school in the fall we were fortunate to have a school nurse who we were able to train in these principles. It was her first year as a school nurse. She was very open to a dynamic approach. She cannot do everything at school that we do at home, but she understands using a glucose tab to nudge his glycemic trend line upward to prevent a low. She follows his sensor data and glances at it periodically during the day. I know of at least two times last year she prevented a serious situation involving a rapidly dropping blood sugar. it was by virtue of her habit of glancing at it.
Using a more dynamic approach of steering his line we are able to keep him in class more. Outside of school, we frequently glance at his trend line graph on our phones during the day and make small decisions. Some choices work great, but others have to be tried again.
When we first came home from the hospital I remember it took 20 minutes to determine a carb count and calculate his insulin dose for his first meal. Now we don't stress over the carb count that much, knowing appropriate places to start and when we need to follow up a mealtime dose with a second glance later. This is especially valuable when eating out and unsure of portion size or how large his appetite might be. I feel like Sugar Surfing is more of a natural fit for us as it allows him to be a kid more. We encourage him to never let diabetes be the reason he doesn’t try.
I think because of our introduction to a dynamic way of thinking from the very beginning I have never sat back and watched his number climb out of range without trying to do something about it. I sometimes see pictures of other CGM graphs and the parents are asking when they can give another dose of insulin. They say they dosed ‘exactly’ as prescribed for the carbs eaten and they are confused as to why it didn't work this time. I feel like with our style there are a number of contributing factors to each dosing decision point instead of just a set formula. I may dose different for the same breakfast depending on if it’s a school day or not.
Driving a car on a video game does not prepare you to take a real one out on the road. In the same fashion, a static formula does not prepare you for real life with diabetes. I’m not saying we get it right every time or that his number is never out of range, I am also not saying this is the easier approach because it does require more work on our part. I do think this is the best way for us to chose to manage his diabetes as it allows him to continue living and eating much like he did prior to diagnosis.
As Joshua's parents, this is the way we feel we can help him grow and thrive in the healthiest manner possible and manage his disease. I recently saw a comment where someone’s doctor advised them to not try Sugar Surfing as it was too much work! Parenting is hard work and anything worthwhile is not going to be easy. Thank you Dr. Ponder for all you do for your patients and the diabetes community as a whole. Your tireless efforts to help equip people with the proper tools and skills are very appreciated.
IF YOU WISH TO SUPPORT THE MISSION, PLEASE DONATE TO SUGAR SURFING.