I just finished viewing your clip online. You seem like a very intelligent and involved mom who decided it was time to take charge. I applaud you, and I agree with many points you make, but I disagree with your position on food.
When my child was diagnosed with diabetes five years ago, he was 13. He is now 18. It came from nowhere. There was no diabetes on either side of my family. My son was always a good healthy eater and very much an athlete. However, I was not going to remove cookies and ice cream from my house. I believe that a carb is a carb. What is different is how fast that carb hits the bloodstream and how many points that carb will raise the body’s blood sugar.
Fortunately, my son was always into body image and nutrition. The thought of McDonald’s makes my whole family sick. However, a Carvel ice cream cake on birthdays and having cookies available is not something I will restrict. I was determined to make diabetes fit into our lives, not the other way around.
I developed a detailed chart, and we filled it out religiously to learn my son’s insulin-to-carb ratio. It was a bit of a roller coaster for a while, especially the first year when his pancreas was obviously spitting out sporadic amounts of insulin. My chart was a-week-at-a-glance, with detailed itemization of times, insulin doses, activity levels, and injection sites for morning, mid-morning, lunch, afternoon, dinner, post dinner, evening, late evening, and early morning. It allowed us to see how the delicate balance of carbs, activity level, and insulin affects blood sugars.
I checked my son’s blood sugar every night for the first five years. The fact that he was on two basketball teams throughout high school was an added challenge for potential delayed lows at night. I was terrified of Dead in Bed syndrome. DIB is/was more of an emotional challenge for me than keeping one step ahead of diabetes itself. I am slowly coming to peace with DIB Syndrome that is associated with diabetes. Now at 18, if my son has an extremely active day, I may check him, but the juice, crackers, and glucose tablets are right next to his bed.
I was not going to demand a treatment plan in school. Several moms I met online advocated for a special plan (i.e, What if his blood sugar is high before a test? What if his blood sugar is low before a test? Don’t you think he has the right to take the test again if he does not do well? Yada, yada.) To my mind, putting that psychological crutch in a child’s mind is wrong. Putting that potential label in teachers’ and peers’ minds is wrong. Of course I was diligent in quietly watching his grades. Of course I was diligent in ensuring that his blood sugars were in range before he walked out the door to school.
Of course we had a private verbal agreement and plan with his teachers and the school nurse – and meetings each year. But documentation, no way. Documentation produces ignorant opinions and labels, in my opinion. Documentation in school for diabetes is often paralleled with special needs labels. Not for me. Not for my son. I recall having to politely remind the school nurse to never use the words “disease,” “disability,” or “diabetics” in front of my son. I informed her that it is what it is, but we choose to instead call it “a challenge” and “an inconvenience.” He is not a diabetic, he is a child who has diabetes. Jargon has always mattered to me.
I was diligent in ensuring my son’s preference for managing his diabetes in private. I made sure that all key teachers knew what diabetes means and what they needed to do and let happen if my son asked to be excused to go to the rest room or pulled out tablets or gatorade in class. The most important thing to my son was privacy and staying one step ahead of diabetes.
My point is that because of and in spite of diabetes, my son has and will continue to succeed and excel without any special accommodations or fanfare. Adversity is a motivator.
I am so thankful to have had an endocrinologist in the hospital when my son was first diagnosed who said, “If you want to eat M&M’s for breakfast, go ahead-it’s not the healthiest breakfast in the world, but just make sure you turn over the package and look at the carbs and dose appropriately.” My son counts every last crumb of food that he eats and doses his proper insulin-to-carb ratio. We have never had to restrict any food because we have learned what his insulin-to-carb ratio is.
Five years later, we can look at food and the portion size and estimate how many cups it is and how many carbs are in it. Key for us is carb counting every morsel of food, regardless of the food item-no restrictions. His A1c’s have always been in range. He checks his blood sugar about 10 times per day. He is not interested in the pump and continues to take Lantus with a syringe and Humalog at all meals and snacks with a pen. It’s so discreet and looks like a Sharpie marker!
I appreciate you letting me email you and the time you took in reading this. I am very disheartened when I hear parents and educators tell children that they must change their diet and restrict items because of diabetes. It does not have to be that way.
Mom of Bruce, Jr. (age 18, diagnosed with type 1 at 13), Brittany, 17, and Brandon, 13
Here is Laura Plunkett’s response to Bonnie.
Thank you for your thoughtful letter. You sound like a wonderful mother with a terrific son.
The video you saw was edited and doesn’t give the whole picture. My son also eats ice cream and cookies on occasion, but for the most part, those foods don’t work for him. My intended point was that if something isn’t working, pay attention, listen to yourself and your family, along with your doctor, and make changes.
In our case, if my son were to wake up and eat M&Ms for breakfast, even on the pump, he would be high and then low, dangerously low. Some children can eat whatever they want as long as they count carbs (which I do mention on the video). No matter how hard we worked with our endocrinologist to make a hamburger and French fries an acceptable dinner option-Danny’s meter would invariably read HI (over 500) regardless of counting carbs or bolusing early. Now if he wants a hamburger for dinner, he skips the roll and fries OR he’ll have it for lunch when he can watch his numbers throughout the afternoon.
I think we as mothers need to be as kind as possible to one another, supporting each other as we face our unique set of circumstances in long-term situations. In the last two years, I have met thousands of parents of children with diabetes, and I am humbled and awed by the creativity, wisdom, and love that has fueled their decisions.
Thank you for your thoughts on both food and school. I’m glad it all worked out as you wanted it to.