I read in the news that an 11-year-old child just passed away. 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.
Our story: https://www.themamamaven.com/my-son-went-into-diabetic-ketoacidosis-and-is-now-a-type-1-diabetic/
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.
Thank YOU for sharing your family stories and fears. We have the exact same fear every day. Keep Fighting. Keep Learning. Keep Journey-ing.
Love,
The Brownings
I know how difficult it can be having had the paramedics here 13 times since his heart transplant in 2004 when he was also diagnosed with Celiacs disease .There is a genetic link between Type 1 diabetes and Celiac disease. (There is no connection between Type 2 diabetes and Celiac disease.) Developing one of the diseases increases the risk of developing the other. Which makes your blood sugars crazy so make sure you check for it too. My son has had it since he was 21 months old and is 33 now. My son can be talking on a 20 blood sugar so its so hard to tell when he is low and he cant really tell either from having it so long. The new machines are ok at times we have had problems with them too. I always check in to see how your doing my heart goes out to the other family it is a difficult disease to have and how it can effect the family as well. We never leave my son alone. I hope they come out with new items to use to help know when there blood sugars are low.
He had it at 21 months, oh Laurie, that’s hard. The new Dexcom monitor is better, but my son is at school now and he was lower than the Dexcom said twice this morning. I tend to panic and overtreat so I am really trying to reign it in. But the little girl passing away yesterday just brought up all these emotions. My son is thriving and growing strong, so we are lucky that way.