February 22, 2016 was a game-changer for our family. My 12 year old son had mentioned to me for a couple of days that he had been abnormally thirsty. At first, on a Thursday, I wasn’t alarmed, but it did ping a little “Hmmm….that’s a symptom of diabetes” in the back of my head. I asked him some questions about it, didn’t worry too much, and asked him to please let me know if it continued. Well, it did. Along with abnormally frequent urination. When he told me that on Sunday night, and had to go to the bathroom 3 times in an hour that we were sitting together in the living room, I was concerned.
On Monday morning I got on the phone to the doctor’s office and requested an appointment right away. We got right in, did some simple bloodwork, and waited til after lunch. And then I got the call. Yes, your son has Type 1 Diabetes. No doubt about it. You’ll need to go to the hospital later today.
And just like that, our lives changed forever.
Type One Diabetes is often misunderstood, since there are so many Type 2 diabetics. In fact, of all the people with “diabetes,” only 5% of them are Type 1. And T1 is totally different from T2. So pretty much everything you think you know about it because your grandpa has it has nothing to do with people with Type 1.
Type 1 diabetes is an auto-immune disease, where the insulin-producing cells in the body have been attacked and destroyed by a virus, and now the pancreas cannot create the insulin needed to metabolize carbohydrates and regular blood sugar. This is not a disease that happens because of eating the wrong things, how much exercise a person gets, or any other lifestyle choices. It is a random, non-preventable, incurable disease that can happen to anyone at any time. I have heard of newborn babies being born with T1, and people as old as 80+ that develop T1. While T1 used to be known as “juvenile diabetes,” it can happen at any age. Type One diabetes is the second most common childhood disease, second only to asthma. I share all of this to educate. Fortunately, since I knew some of the symptoms of diabetes, I was able to act fast and get my son diagnosed early. Oftentimes families do not know about Type One diabetes and their children can get into a serious life-threatening diabetic coma before diagnosis. Our kids have always been pretty healthy, they eat pretty healthfully, they are active and exercise. And yet it happened to us. Nobody is immune.
Having been homeschooling for nearly 2 decades now, I was already very thankful for all that this educational option offered to my family. But adding in Type 1 Diabetes has given me another huge reason to appreciate homeschooling. T1 requires round-the-clock, careful monitoring, about 10 finger pricks and as many as 5+ shots of insulin per day, at least 1 nighttime check every night (often more than that). Being able to handle these issues myself at home is a tremendous comfort for me and my family. Having flexible start times for school is also helpful, because my days of getting a full night’s sleep are over*, and many times my T1 son has his sleep disturbed through the night as well. T1 can be extremely unpredictable and tiring. Homeschooling gives us the buffer we require to manage it all.
Now that I’ve given a little background for those that are unfamiliar, I want to share with parents of newly-diagnosed T1 kids some of the resources that have been a huge help to us. Some affiliate links have been used.
Parents of Type One Diabetics is an excellent, active Facebook group that I highly recommend. The support I’ve gained from this group has been invaluable. The first time my son had low blood sugar at 2am and I was so scared and couldn’t remember everything to do, there were experienced moms also up at that hour, ready and able to give me helpful advice and reminders so I could wisely care for my son. Be sure to follow the instructions for admission to the group. The group owner carefully vets members.
JDRF Bag of Hope: Go request yours today. It’s a free welcome-to-this-lowsy-club care package that will give you and your child some love, encouragement, and education. Rufus the Diabetes Bear made me bawl my eyes out when I saw how he has special patches on all of his injection sites, but was actually well-received by my 12 year old son, which surprised me a lot. Never underestimate the comfort a cuddly bear can provide when things are scary and difficult!
Start educating yourself! The more you understand about how Type 1 diabetes works, the better equipped you’ll be to do all of the zigging and zagging that you will have to do on your own on a daily basis. This book is a very good starting point.
This is another excellent book that will give you some helpful insights into balancing giving your T1 kiddo a normal childhood despite the challenges and demands of this disease. Yes, your T1 kids can still have birthday cake, pizza, Halloween candy, and pie at Thanksgiving. 🙂
Calorie King App: You’ll probably get a Calorie King book in your JDRF Bag of Hope, but you’ll want this handy app on your phone as well. SO helpful when you’re out and want to get an ice cream cone from McD’s and yes indeed, you now can know how many carbs are in it! Great for restaurants as well as regular ingredients.
Siri: I use Siri all the time to find out “How many carbs are in a cup of whole wheat flour” and such. Quick and easy!
The Genteel Lancing Device is a favorite of T1 families everywhere. This device is designed to make finger pokes less painful (many people say it’s totally painless), while also using a gentle suction to pull blood to the surface so you can get a good sample for testing. Before we got our Genteel I was struggling almost every night, hovering over my son in the dark, squeezing his fingers to try to get enough blood for our test strip. Genteel has been a huge help to us in this regard! Also, this is great because you can actually use it to test from alternate sites, like the side of the hand, which can be so helpful in giving sore fingers a break. (if you suspect a low, only use fingertips for testing) Worth every penny. A lot of times sweet grandparents will buy a Genteel as a gift to help out. We like it that you can choose from different colors, you get a fun sticker pack so you can customize your Genteel, and they also send a zippered carrying case that will work for your glucose meter, Genteel, and all of your lancing supplies. Highly recommended.
One of the most daunting parts of being newly diagnosed with T1 was having to figure out how many carbs are in everything. I’d see charts with non-helpful information like, “Small Apple, xxx carbs” and I’d be looking at this darn apple trying to figure out if it was small or medium. NOT good enough, and absolutely exhausting when you multiply it by every food decision all day long, especially if you eat a lot of homemade foods and fruits and veggies. The Perfect Portions scale has been a HUGE blessing. No longer am I trying to fit spaghetti into a cup to figure out the carbs, now I can just put a plate on the scale, zero it out, put in the code for the food item we are eating, give my son however much he wants to eat, and the scale will tell me how many carbs are in that food. Voila! SO much nicer than all the counting and measuring and stress! (it even works for donuts!) It’s also great when you see on a package a frozen veggies that 85g of broccoli is one serving. Normally I’d feel like screaming if I saw that, but again, with our scale I can just put the plate on, zero it out, then add the broccoli and see when we get to 85g of it and know that’s a serving. So. Easy. Total sanity saver. And it’s not heavy or too big, so we’ve even taken it out to restaurants where it’s so helpful when trying to figure out carbs for French Fries and all sorts of stuff. On the sale page there are two scales to choose from, and they look identical to me. We got the cheaper one and are very happy with it.
We tried out several different ways of carrying our diabetic supplies. (because you pretty much will need to have your child take their supplies with them everywhere they go forever) We used an old lunchbox for awhile (always risking the box opening and everything falling out), and the JDRF bag for awhile (rope strings would cut into his shoulders, and it was impossible to organize), and a large backpack, which was too cumbersome. Then we learned about this bag, and I think it’s perfect. Comfortable to carry, not too big, but big enough to fit every single thing we need: glucose monitor and Genteel, Insulin, Glucagon, testing supplies, ketosticks, juice boxes and other supplies for lows, and snacks. There are several zippered sections and pockets so you can organize everything nicely and find what you need when you need it. It’s inexpensive, and comes in a nice variety of colors.
We got these Type 1 Diabetic pull charms to put on the bag to identify it as medical supplies easily. Some folks get a patch, but I knew I’d never get around to sewing one on, so this worked better for us.
This Frio cooling wallet has been very helpful to us when carrying insulin. You have to protect insulin from extreme temps, and before we got this we were having to carry an additional bag with an ice pack wrapped in a small towel because you also don’t want your insulin to freeze. Oy. It was one more thing to carry, heavy, and awkward, but we were always a little concerned about the freezing issue. This size Frio is perfect for carrying one or two insulin pens and keeping them cool without any risk of freezing. We also sometimes stick a gogurt or 2 in there. And it fits inside our sling pack perfectly, so we don’t have to carry anything extra. I also like the way the Frio gives extra padding to protect the insulin. It’s very easy to use, and once it’s activated, it stays plump and cold for several days.
Dexcom: This was a total game-changer for us. Dexcom is a continuous glucose monitor that your T1 wears on their body. Every five minutes it checks their blood sugar levels, and transmits that information to a device that the T1 has, and you can have it share to your smartphone as well. This. Changed. Everything. I went from a zombie that hadn’t had a normal night’s sleep in well over a year, to a person that gets normal sleep almost every night. Not only do you get this information, but you can see what the trend is (increasing, decreasing, steady, speed of increase/decrease, etc) so that helps you make smarter decisions about dosing, handling lows, adjusting basal insulin dose, and more. This has also made it possible for my T1 to be much more independent, and to make a lot more decisions for himself, which are necessary skills for him to have. If I had known at the start would Dexcom could do for us, I would have gotten one immediately. It’s worth every penny and a literal life-saver for your T1! (However, I will say that not having it for over a year forced me to learn a lot about T1 and I think I’m a better caregiver because of it.) If your insurance will cover it or you can afford it, RUN to get a Dexcom today.
While I wish Type One Diabetes wasn’t an issue, it’s a big one for so many families. I hope that this post has been a help both to educate those of you that have not been familiar with this disease, and a helpful resource for other families getting started on this journey. If you are a family now considering homeschooling for your T1 child, please leave a comment or email me to let me know if I can help point you in the right direction for more information. I know that many Type 1 families find that homeschooling is an excellent option for balancing out the care that their child needs and meeting their educational needs as well.