On February 12th, 2021, my 15-year old son’s heart stopped beating.
He was in the hospital and they were treating him for a sudden onset of Type 1 diabetes. He had gone into diabetic keto acidosis because we had no idea about the symptoms of Type 1 and never imagined it would affect our family. (Click here to read about our son’s vaccine injury story.) His blood sugar was over 600 upon admittance and his A1c was 12. It came out of nowhere fast and furious and within two days of being extremely thirsty, peeing often, and losing a lot of weight fast, we rushed him to the hospital where we learned our lives were about to change drastically.
I was no stranger to dietary and lifestyle changes. Over the past 15 years, we had stopped eating pretty much anything bad, modified diets for allergies, completely changed over the products in/around our home, utilized therapy to work on emotional health, and so much more. So while this experience helped prepare us, I don’t think anything can truly prepare you for the diagnosis of Type 1 diabetes.
After ten days in the hospital, we were sent to our diabetes education appointments with the endocrinologist team. Fortunately, one of my best friends has a daughter with Type 1 and we hang out with them often. So I had learned a little about Continuous Glucose Monitor, insulin pumps, etc. I knew that I did not want to leave the hospital without a Dexcom. I had read too many negative reviews about the Libre and was not about to prick my kid’s finger many times a day. I didn’t know it at the time, but the Dexcom would provide even more value to our journey just in a couple of weeks.
The first nights home after being discharged were horrible. I was taking extra cortisol support supplements and magnesium because I was extremely stressed out. I stuck to the times and amounts the endo team told us, and his numbers were still out of control.
In the days ahead, the best thing I ever did was get comfortable figuring out what works for my kiddo, and it’s usually quite far off from the random guessing calculations we got from the endo team. Those were a good starting point but weren’t a good place to sit at.
Fast forward two months into our journey where we are today. Our two-month follow up appointment ran very short because it left the endo team in awe. They couldn’t believe the success we’ve had and where his numbers are at only two months into it. So while I have only two months’ experience in this and while everyone’s journey is going to differ vastly, I wanted to jot down the things we’ve done before I forget them. I hope and pray that they can be of some comfort and help to family’s who are having to begin this difficult journey.
Get A Dexcom
Having a Dexcom is about so much more than just knowing what their blood sugar is at at meal times. (When we first started, our endo team told us to only correct with meals. Yeah no that is not a good way to go.) The most valuable thing about the Dexcom in my experience thus far has been to watch for patterns. Patterns like how my kiddo would go low between 2 and 4 am every night. Like how he spikes after breakfast (cortisol). How much he drops with different types of exercise. How much certain foods affect his blood sugar (and how much some don’t!). Yes I was hyper focused on Dexcom numbers for two weeks straight. But it helped me learn so much that empowered us to gain success early on in this journey. (Two months into it, his estimated A1c is down to 6.1.)
We do not have insurance that will cover the Dexcom, so we pay cash for it. It’s around $350 a month for the sensors and $250 every three months for the transmitter. It has proven to be so valuable to us that while it’s expensive, I don’t even care what it costs.
I have many friends who have lived with T1 for decades that have said they finally got a Dexcom and had no idea they were going so low every night, which explained why they were having health issues associated with hypoglycemia.
It’s helpful for parents who need sleep as well. You can set alarms on your own phone with the Dexcom Share app so it will wake you up if they go low in the middle of the night (or high) or anytime of the day.
Let me share some examples of ways to utilize the Dexcom to learn about your child’s insulin and dietary needs.
For my son, I saw that he spikes after breakfast every morning if I use the same ratio of insulin for the rest of his meals. That morning spike is likely cortisol and until he is done growing, I learned to dose him hard for his breakfast. Even with a low-carb breakfast (we’ll talk about low carb in a bit), he would spike unless I dosed him 1 unit of insulin for every 2-3 grams of carbs. That keeps him nice and level until lunchtime. But with lunch, he only needs about 1 unit for every 6 grams of carbs. But from what I’ve also learned watching the Dexcom, not all carbs are the same. 5 net carbs from an Unbun bun hardly affects his blood sugar at all, so I can’t count those carbs or he’ll go low.
I know it seems overwhelming, but having a Dexcom will empower you to see exactly how your child’s blood sugar patterns are and give you the expertise to find what works for them in no time.
When they are in their teenage hormonal years, it’s always helpful to combat those stubborn high blood sugars as their growth hormones hit in the evenings. And for watching those low blood sugars from exercise/activity.
Also remember that while it is such a valuable tool, it’s not perfect. I’ve noticed the first 24 hours of a new sensor, it can be inaccurate. I often end up calibrating it if it stays off but sometimes it works itself out.
Dietary Adjustments
This is where the Dexcom truly comes in handy. You can start catching patterns of how each meal affects their blood sugar. Ideally, blood sugar would not spike after a meal. Achieving a proper dose of insulin for each meal is ideal but may take some time.
Having already spent years knowing the conventional medical field knows little to nothing about proper nutrition, I knew I was not going to take the conventional advice for Type 1 and just attempt to dose for whatever carbs he eats. I also knew that since he wasn’t already consuming a minimum of 30 gram of carbs with each meal, I wasn’t going to follow that either.
In my initial research, I found two main “alternative” dietary methods for Type 1. Low-carb (with the leading medical proponent being Dr. Bernstein) and something quite different high in fruit from Mastering Diabetes. The latter didn’t align with our lifestyle at all so I dove into the low-carb world. We were already not eating bread or many grains, and my kids didn’t even know that hot dogs and hamburgers are normally eaten on buns. (We always eat our burgers wrapped in lettuce anyway.) This lifestyle matched closely what we were already doing, and the testimonies inspired me greatly. I read Dr. Bernstein’s book The Diabetes Solution while my son was in the hospital.
Rather than adhere to it very strictly, I chose to aim to transition to it in a version we customized for what we discover would work for our kiddo. And that has been so worth it!
I have learned that carbs are not equal. 5 grams of one thing can have a drastically different effect on glucose than 5 grams of another thing. But overall, I set a goal to keep him under 20g of carbs per meal as I quickly found that was more likely to keep him very stable. Two months into it, he usually has about 50 grams of carbs or less a day. Despite what the conventional medical field says, weight gain can still happen this way if needed. My son (who was very thin and had lost quite a bit of weight before his hospitalization) gained twenty pounds in two months on this diet. It will not cause excess weight gain and it will not cause weight loss for those who are already thin.
As an example of a day’s meals, here’s what my son eats:
Breakfast: Omelet with either organic no-sugar turkey bacon or sliced grass-fed Teton sausage plus low-carb veggie(s) of choice (green peppers, broccoli, cauliflower, etc.), sometimes with sour cream and guacamole on top. Usually around 10 grams of carbs or less.
Lunch: Grass-fed beef burger with organic cheese served either wrapped in lettuce leaf or with lettuce and served on a toasted Unbun bun, side of whole avocado, pickles, and organic bell peppers
Dinner: Grilled ranch chicken (organic chicken marinated in TessaMae’s Ranch dressing), Sauteed garlicky green beans, side salad with cucumbers and TessaMae’s ranch dressing—around 10g carbs or less
Snacks: Pickle roll ups (pickle rolled up in organic turkey lunchmeat with cream cheese)—these are a favorite of his! Dang bars are also a favorite.
I understand that this may not be a feasible option for everyone; I’m sharing what we have found to work great for us so far.
If you’d like to see more and get some meal ideas, you can check out my Gabe’s T1D meals Highlight on my IG sarajo.poff
A note of caution: There are many things in the low-carb world that do not support health, like sugar-free products containing artificial sweeteners (aspartame, suralose, etc.) that may help achieve great blood sugars but carry some pretty serious health risks in other areas of health. For instance, aspartame is linked to severe neurological concerns including brain tumors, and sucralose has been linked to bowel disease. As always, whole / real foods are best.
Resources
I spent the first week or two writing everything he ate and every dose of insulin he got in a notebook. This was how I could see patterns and keep carb counts for specific meals so I didn’t have to calculate them every time he ate that meal. But then a friend told me about the app called MySugr and that has been incredible! It allows me to do all of those things plus more. I can see when the last time I dosed him with insulin was, double check that I did indeed give him his nightly basal insulin, go back to see how his blood sugar handled a meal he had previously and know if I need to adjust dosage, etc. It also allows me to upload pictures of his meals which I did in case the endo team questioned the sufficiency of his diet with the low carb amount.
The Dexcom Clarity app helps me track our success in controlling his blood sugars, shows me an estimated A1c, and allowed us to create a code so the endo doc team can access his Dexcom statistics. Once I did this, I no longer had to fax food/insulin logs to them.
Supplements
Right away, I had to dig into research to find out what nutritional/herbal supplements could help. The first couple things that kept coming up were two specific herbs that I had never heard about. These were researched repeatedly due to their ability to help support blood sugars and I was astounded by how much they kept coming up. (Probably a God thing!) I decided to check with the manufacturer of my own HFFG supplements and they had already put together a supplement not only with those two herbs but also other nutrients like chromium, alpha lipoic acid, and a few others for supporting glucose metabolism and insulin sensitivity. At first, my son kept dropping low every night and I’d have to wake up and give him some carbs to correct. (I used NingXia packets for that purpose since this give him a huge boost of antioxidants as well. I keep two of these in his insulin bag at all times to use in case he goes low from exercise or other things.) The very first night that I started him on the GlucoControl supplement, he didn’t need carbs to stop him from going low. He got low and then it just leveled itself out. It has continued to do that almost every night. Since I could see it helping so much, I also started having him take one in the mornings as well. I have given it to friends with diabetes and they have reported immediate differences in blood sugar as well.
When he was in the hospital, he had to have IV antibiotics for a lung infection from the ventilator he was on while he was sedated. This broke my heart but I grabbed one of the Gut Restore probiotics from our wellness center and had the doctor approve it for him to be on. These are specifically designed to protect the body’s microbiota and intestinal mucosa from the potential negative effects of antibiotics. It worked wonderfully (he didn’t have a single negative effect from the antibiotics) and I have kept him on it daily.
I came across a lot of research showing that optimizing Vitamin D and omega 3 levels is very essential for both preventing and helping with Type 1 diabetes. My Gabe had already been on these but not as consistently as he should have been, so I am much better about monitoring his Vitamin D level (using this home test) and keeping him on these consistently. He takes this Vitamin D every day and this cod liver oil (or this liquid cod liver oil) for omega 3’s.
In order to give him the extra immune support he needed especially while we were figuring out how to keep his blood sugars controlled, I also started having him take Inner Defense softgels daily. He has continued those most days, especially when we are out in public.
In my naturopathy training, I learned the premise of “like cures like.” So for instance if someone is in need of thyroid healing/support, taking the thyroid animal glandulars can help strengthen the person’s own thyroid. For that reason, I am also starting Gabe on a grass-fed beef desiccated pancreas supplement. I will update with our experience on this.
5/11 Update: We have seen incredible improvement in blood sugar control with the implementation of the pancreas supplement! I expected that results would be gradual over a long-term period so I was surprised to see that it is helping already.
(Check out my T1D Research Highlight on my IG.)
Continuing to Move Forward
We are just two months into our journey, and it was 100% worth the enormous time and mental investment to feel more confident and empowered on this lifestyle. I’ve done a lot of hard things in my life, and this has been among the hardest. It can take a serious emotional toll on everyone in the family, so the sooner we gain some control, the better! My heart and prayers are with every person reading this due to a new diagnosis. Please follow my social media, subscribe to my newsletter, and follow along as I continue to share what we learn. And please reach out anytime if you’re struggling and need someone to talk to.
Many blessings to you,
~Sara Jo Poff