An 11-year-old child died today. She had Type 1 Diabetes since she was young and was at a sleepover of friend, who also had Type 1 Diabetes – during the night she had low blood sugar and it turned into a brain injury. She was around people who knew what to do and still she went too low. After a couple of days in the hospital, she passed away. My heart breaks for her family. And selfishly, my heart breaks for myself and for all the other parents and caregivers or Type 1 Diabetes children and adults. Because this could happen to my child and other children/adults with Type 1 Diabetes at any time. A Type 1 Diabetes Parent’s Worst Fear
My son has been battling this for a year and a month and I can’t even count how many times his blood sugar has dropped low or gone too high. It happens practically every day. While I wish his Type 1 Diabetes could be stable and drama-free, it’s not. No matter what we do. Yes, we have a continuous glucose monitor called Dexcom. This does alert us to what his blood sugar is and updates every 5 minutes. But it’s not always correct and sometimes doesn’t work. Yes, I watch what I feed him, but foods like pasta and pizza (surprisingly NOT ice cream) makes his blood sugar crazy. He goes high if he has cereal or frankly anything in the morning My son is also in puberty so when he has a growth spurt his blood sugar doesn’t react the way it normally should. Also, if we don’t know the carb count for his food we have to guess and give him an insulin dose on his insulin pump. We’re not always correct. Most of the time when we go to a restaurant I have to guess at the carb count and pray that I didn’t give him too much or too little insulin. I use a book Calorie King and the app (which isn’t as good as the book), rely on googling the menu or I just freaking guess. Most of the time when I ask the wait staff they don’t know the carb count and then I’ve gotten attitudes on “how I am letting my kid eat that?” Yes, Misty, my kid CAN have an ice cream sundae, I just have to know the carb count to give him enough insulin for it. But we can handle that.
But what’s harder is night time. I kiss my son every night because I’m worried he won’t wake up one day. I worry that he’ll go really low in the middle of the night and I won’t hear the alarm on his Dexcom. I worry that he won’t feel it. I worry that it will not work correctly and he’ll still be low. I worry that he will go too low and he’ll have a seizure. Or it will be worse. I honestly haven’t thought about what could happen because it’s just too scary to me. I try to prevent him from going too low. I pretty much know that he dips around 1 or 2AM or sometimes 4AM and I try to wake up to check him. But I don’t always wake up (and as much as I love my husband he is NOT concerned at all.). He thinks that because our endocrinologist didn’t tell us to do 2AM checks on our son that we shouldn’t do them. I try to analyze the data and know what my son’s blood sugar is so I can predict if he’ll go high or low. Too high isn’t good either – for months he’s been going low between 10 and 11PM and now he seems to go high at 2AM. Going too high can give him ketones, which is protein in his urine and he can wind up back in the hospital, back in diabetic keto acidosis. It’s a tightrope we walk. It’s a balance that we deal with around 20 times a day. This is one battle we need to conquer. My son never waking up again is my biggest fear. We need a cure. I shouldn’t have to save my kid’s life with a juicebox.
Note: I am not a doctor or have medical training. I talk about Type 1 Diabetes from a parent’s point of view. Always consult your endocrinology team if you have any questions. I advocate for my child until he can advocate for himself.