Six months ago our life was as normal as it could have been. Things changed, however, when my son (then 11) was diagnosed with type 1 diabetes. I didn’t see it coming, even when there were three major signs in the four days before he was diagnosed. With the flu being rampant right now, I’m sharing my story with you, because my son had Diabetes Ketoacidosis (nicknamed DKA) and was rapidly going downhill when we found out he had type 1 diabetes. We had thought it was the stomach flu. My son is okay now, but will be on insulin the rest of his life. While diagnosing him a few days earlier would NOT have stopped his type 1 diabetes, we could have avoided being rushed to the Emergency Room and a two-day hospitalization in the Pediatric ICU. According to the Juvenile Diabetes Research Foundation, “Knowing the warning signs for type 1 diabetes could help save a life! Type 1 diabetes can often go undiagnosed in its early stages because the symptoms can be mistaken for more common illnesses, like the flu.” It’s important to call your doctor if you notice any of the symptoms below, as misdiagnosis or going untreated can have serious consequences.
It was the weekend before the total solar eclipse in August 2017. My husband was away on a trip and was due to come home Monday night. That Friday evening I took the kids out for ice cream and my oldest son, Benjamin, threw up later that night. He had a peanut butter milkshake, followed by Asian food. The next day he seemed okay, so I figured it was just what he ate. That was sign number one. Then Saturday through Monday he began drinking a lot of water and frequently urinating. So much so that I said to myself that it was weird. That was sign two and three. Since it was late August, I figured the increase of liquids (and subsequent output) was a result of the heat. Over that weekend, Ben kept coming into my bed in the middle of the night — he hadn’t done this in a long time, but since my husband had been gone for two weeks, I thought it was because he missed his dad. Now I know that he was trying to tell me that something was wrong.
The day of the eclipse was that Monday, August 21. We hadn’t eaten much, since we were running around, and ended up having a lot of snacks. That night Ben didn’t want to eat dinner and I didn’t push it. He had been sick Friday night and he’s the kind of kid that is cautious if he’s not feeling well. (He usually always knows when he’s sick.) My husband came home around 7pm that night, and later that evening I found a package of skittles that Ben had snuck before bed. Around 2 or 3am, Ben started vomiting. He kept throwing up and throwing up. He kept trying to drink water, but couldn’t keep it down. I tried to regulate what he was drinking. I figured that he would be okay if he rested and stopped drinking water until the vomiting stopped. I thought that he had the stomach flu.
Ben was supposed to go on a trip with my in-laws, but I called them and explained what was happening. They agreed to come over by 10am instead to watch the kids so I could go into New York City for a work project. However, around 9am, I looked at Ben and he just looked gray and sunken (WARNING SIGN). So pale and so skeletal. He’s a skinny kid as it is, but something was off. I realized that we needed to go see the doctor right away. My youngest child, Skylar, isn’t good with transitions and wouldn’t get dressed. I packed a backpack with snacks and tablets for my kids, I had a feeling we were going to be at the doctor’s office for a while. Ben was lying on the floor in our foyer at this point. He told me he was having trouble breathing, which really confused me. Skylar took his time putting his shoes on (which is his normal). Somehow I got him to leave without the usual screaming tantrum. My daughter led Skylar to the subway and I basically held Ben up. I knew that the subway was going to get us to our pediatrician faster (our doctor is two short stops away) than an Uber. Once we got to the office, our doctor immediately brought Ben a bottle of water. He guzzled it down, which I’d never seen him do. The doctor looked at him and said it was either gastro-related or something else. “Something else? What?” My mind was going crazy. He then asked me to help Ben pee in a cup. Luckily, my younger two kids were able to sit in the waiting room while I took Ben to the exam room. The urine was tested and the glucose was 500, which was dangerously high. He also had ketones of 160mg. Now, I really didn’t understand that he was in Diabetic Ketoacidosis (called DKA), but it’s really bad. As in he could have gone into a coma kind of bad.
The doctor told us we needed to go to the ER. The word diabetes was mentioned. I was still pretty confused at this point. I tried to keep it together though. An ambulance was called and I asked to be taken to Cohen Children’s Medical Center. It’s the closest children’s ER (we’ve been there before) to our home and they’ve always treated us wonderfully. However, another hospital’s ambulance was there and they said they were taking us to their hospital. I called my sister-in-law, who’s a doctor and she called the pediatrician. This part is blurry, but they agreed to take us to Cohen’s.
They started an IV of fluids for Ben in the ambulance and we were at the children’s ER about 20 minutes later. At this point, I didn’t know what was going to happen — how could my kid have diabetes? My mother was there when we got to the hospital. My in-laws and my husband showed up soon after. My sister-in-law also came. My mother quickly took my younger son and daughter home with her, as the ER waiting room is no place for them to hang out and she lives nearby. I’m not sure how long we were in the ER. It could have been one or two hours; it could have been longer. My mind was spinning and I wanted to vomit myself. But, as a parent, I had to hold it together for my kid. I did excuse myself a few times to cry. Ben was given more IV fluid, but they stopped him from drinking water. He looked so pale and sick…my heart was just breaking. The doctor we saw said that he sees at least one child a day who’s in Diabetic Ketoacidosis, which was shocking to me.
Ben had to go to the Pediatric ICU (called PICU for short) and we were told he would be there for a few days. His white blood cells were elevated (at 25). That scared me too and I still was really confused as to what was going on. Would Ben get better? Did the elevated white blood cells mean something? Ben kept begging for water and finally they let him have ice chips, but not a lot. Hours later we were still only allowed to give him ice chips. The IVs hurt his arms. He was miserable. We called my mom to bring the two younger ones back to meet my in-laws at the ER so they could take them to their house upstate. I had to focus on Ben and if Skylar was around, I couldn’t do that. I ran home to pack a bag for my younger kids and for myself. I sent my husband home around 9pm to get some rest. The night wasn’t easy, Ben couldn’t sleep. I let him watch the Disney Channel for hours. The next morning he looked much better, but not quite himself. At 9am he was cleared to drink and eat and I went down the cafeteria to get my boy some french toast. While we knew things were going to change, he was allowed one last meal without counting carbohydrates.
I still had no clue about how I was going to take care of Ben and how eating was going to work. Kids and adults with type 1 diabetes can actually eat ANYTHING they want, they just have to figure out the carbohydrates in the serving they eat. But at this point, I was getting confused with type 2 diabetes and figuring all the sugar-free foods I’d need to make. As the day went on, the social worker and then the diabetic educator came in and we got a crash course in how to take care of Ben. I’m not going to say that day was easy and that Ben wasn’t angry, but he was doing well enough that we were finally cleared to go home at 10pm that night. He just had to first give himself an injection of his long-acting insulin (they had ordered supplies from a pharmacy for us, so we had $300 worth of insulin and needles, etc). I was shocked though that they would send us home with only knowing the basics, but we were supposed to go to the endocrinologist the next day for more training.
From day one, Ben has given himself every injection, but taking his blood sugar is my job most of the time. When I checked Ben’s blood sugar after leaving the hospital that night, it was full of drama and I hated pricking his fingers. But I had to do it, as he couldn’t. Turns out his blood sugar was way too high at midnight and I was convinced we’d have to go to the hospital. But here’s the thing about type 1 diabetes, our doctors didn’t want us to go back to the ER unless it was really serious. Our endocrinologist’s office has a night hotline that I called that night (and many a night after). They called me right back and talked us through what to do. Finally, around 12:30ish Ben went to bed and my husband and I finally let the tears fall. We felt horrible that our 11-year-old would have to deal with a chronic illness. The next day we went to the endocrinologist’s office for more training.
The following days weren’t easy. Some of our friends and family members were great and some of them kind of ignored the whole situation and weren’t as great. Every insulin shot was an argument and I had to basically bribe Ben to take them. Eventually, he got used to it, but then we had to deal with the school nurse two weeks later when he started 6th grade. Luckily that went well and our NYC public school has been amazing. His 6th grade co-teaching team made everyone have a snack at 10:30am so that no one would know Ben had type 1 diabetes. He waited until December to tell his class, who were all supportive.
We’ve dealt with low blood sugar and high blood sugars in the following four months after diagnosis. I was very nervous about how to cook for my son and after a while, I stopped making special meals for him and just gave him a portion of what we were eating (but making sure I knew the carb count). I learned how to test his blood sugar without hurting his as much (we use a finger pricker called Genteel), and how certain foods like pizza and pasta would make his blood sugar too high.
Type 1 diabetes is an autoimmune disease and most likely he had it for a while before he went into DKA. We have a blood sugar monitor for Ben called Dexcom that I insert into his skin. He came out of the “honeymoon” period/went into puberty in late December, which made his blood sugar go very high for a period of 10 days. I spent a lot of time on the phone with his doctors, adjusting his insulin dose.
In mid-January, he got an insulin pump called Omnipod. Instead of taking four shots a day, he now gets one insulin pump (it’s tubeless) inserted once every three days. Instead of having to take a shot every time he wants to eat something over five carbs, he can now put the number of carbs into his insulin pump and it will automatically give him a dose of insulin. I always check Ben’s blood sugar at 11pm and around 1am. I’m exhausted, but he usually goes low during that time and I can prevent that by giving him some low-carb chocolate milk or a yogurt pouch. I can give him candy or juice to raise his blood sugar, but without fat and protein, it will just drop again. While he’d be totally cool with the candy, I know that it’s setting him up for bad habits later on.
I am on guard ALL the time, and I make sure that I watch Ben closely. It’s exhausting, but I’m afraid to relax. But at almost seven months in, we are functioning a lot better. Since my son was diagnosed, three more children I know have been diagnosed. And when I hear on the news that a child died from flu-like symptoms, my mind wonders if it was really DKA, rather than the flu. Having my son go into DKA was so scary — it’s my hope that if you’re reading this, it can help a child in your life from going into DKA. For more resources on type 1 diabetes, feel free to come to my blog, The Mama Maven, The Mod Squad, which is a fantastic parent-run non-profit that offers so much information, Beyond Type 1, a helpful Facebook group, and the JDRF.
Nancy Johnson Horn has been a blogger since 2007, working for sites like People.com’s “Moms and Babies” and BabyCenter. She started The Mama Maven Blog in 2011, while still working on freelance projects for iVillage and BabyCenter, and editing a local website. She’s been the voice of several big brands on social media and loves working behind the scenes in community management to make her clients shine. She is married and has three children, ages 12 (boy), 10 (girl), and 7 (boy). Her oldest child has type 1 diabetes, ADHD, and low muscle tone and her youngest child has a speech delay and attention issues. Before kids she worked at the Food Network and taught in the NYC Schools.
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*Story photos provided by the author. Cover photo by Annie Spratt via Unsplash.
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