If your child has type 1 diabetes, I’m sure you remember the feeling of returning home after the diagnosis. The only thing I could compare it to was returning home with a newborn, only this time the newborn was nine years old and had a terrifying, chronic disease. There were so many things to learn and so much urgency behind each new diabetes task. I remember fumbling and failing, desperately trying to just get a simple blood sugar from Dave’s finger while he slept the first night back from the hospital.
And I was still in shock. There had been a misdiagnosis. Severe weight loss. DKA. Near death. Frantic moments in the ICU. If you’ve been through it, or anything close, you understand the emotional impact of those moments, and that they will always be with you.
Post-diagnosis followed another familiar plotline – a dramatically too short training session from an endocrinologist and dietitian on controlling diabetes through injections and carb counting. “Too high too often and the complications include blindness and amputation…. Too low and severe hypoglycemia and death” was the phrase I remember from our doctor as he drew a hypothetical blood glucose line on some paper.
Absolutely not on my watch, I thought with instant resolve.
As a physicist, when I looked at the blood sugar graph being drawn, I became intoxicated by the idea that I could devise a way to control that line via the use of the two levers presented to us – carb and insulin. My love for my son is boundless and there was no brake on my total commitment to figuring out how to control blood sugar. Dave had a different and prescient reaction to his training: “Then I won’t eat carbs,” he said, which elicited a laugh from both me and the doctor.
As Dave recovered, I turned my mind towards solving the glucose-insulin problem. I kept detailed records of insulin dosing and results. We tried several ‘control foods’ – oatmeal and a Starbucks chocolate chip cookie – and attempted to hone in on the magical dosing technique. The results were somewhat tantalizing at first, and I felt like success was near. The models I developed on my computer became more and more sophisticated and I showed my wife ‘getting close!’ results each night.
After two or three weeks I got a little discouraged – some days the model would work, then Dave would have scary lows, then he’d go super high. Meanwhile, my wife had ordered Dr. Bernstein’s book, Diabetes Solution. The book arrived and I started flipping through it – immediately, my physicist’s eye was caught by ‘the law of small numbers’. After reading a page, I became so overwhelmed I could barely focus. I knew we had found our way out of this mess. I recognized that my models and Dave’s results were just the results Dr. Bernstein predicted for high carb foods, i.e. the results from a high carb meal and big doses of insulin were stochastic (random). Dave was right after all – get rid of the carbohydrates, and you won’t have the blood sugar swings. And that’s what we did. My family changed everything about the way we eat to support Dave. (This resulted in huge health benefits for the rest of us, but that is another story.)
All this happened about 30 days after Dave’s diagnosis. After a few months of studying Dr. Bernstein’s book in detail, we had Dave’s A1C below 6% and then below 5.5% and on to where it remains six years later – below 5.0%. Dave is 15 now. Low carb has not been a cure for him – he still has to do all the work. Here’s a quick review of his day: three basal insulin shots (per Dr. Bernstein’s protocol), Regular insulin (e.g. Humulin-R) to cover low carb high protein meals (pro tip: using R to cover low carb high protein meals is a true revelation), small doses of rapid acting insulin to correct blood sugar over 100 mg/dL and a measured amount of glucose/liquid glucose to correct lows below 75 mg/dL. So, you see that Dave still does all the work… all the fingerpricks, all the injections and all the vigilance. It’s the same old type 1 diabetes, just without the big blood sugar swings.
When we started treating Dave with a low carb diet, it was difficult to find anyone, especially younger kids, following too. We were nearly alone. This is no longer the case and it is difficult to avoid the pictures of flat CGM lines on social media, and the incredible reports of perfect A1Cs, or recipes for low carb food in the diabetes community. Young and old people with diabetes are thriving on a low carb diet. The professional associations and charities like the American Diabetes Association and JDRF have not fully acknowledged the success of low carb, but the secret is out of the bag, and they’ll need to embrace the change in order to stay relevant. The success of a very low carb diet for children with type 1 diabetes has been so profound that the approach has been studied by groups from Harvard and Duke University and the news of ‘unprecedented glycemic control’ has been published in Pediatrics and reported on in the New York Times.
Dr. Bernstein talked to Dave about a year after his diagnosis. He said, “Dave, if you keep doing what you are doing, you’ll be healthier than any of your nondiabetic friends.” Six years later, we are on track and Dr. Bernstein’s statement ‘you’ll be healthier than any of your nondiabetic friends’ rings true. Dave is over six feet tall, and is turning into a football and basketball star. He has healthy, normal non-diabetic blood sugars and he’s not the only one.
More on Dave’s journey and stories of others can be found here:
Dr. Bernstein’s ‘parent’s playlist’ on YouTube.
Dr. RD Dikeman’s talk on diabetic complications and how to avoid them.
Some recipe ideas for meals, snacks and holidays.