How did you know your child had Type 1 diabetes? Parents of children with diabetes will hear this question asked a million times. And each time you tell your story the story gets shorter and shorter. You begin to leave out details. Details that may one day save another child's life. I wrote this for a couple of reasons. The first reason was to document the details and help other families who are searching for answers to unexplained symptoms. The second reason was to really get my emotions off my chest, and reflect.
December 30, 2016 is a day I will never forget.
This date will now be forever know to us as Carter's "dia-versary." This was the day my seven year old son Carter was diagnosed with Type one Diabetes. I still tear up when I say or even write those words... my son was diagnosed with T1D. It all kind of happened so fast really. It was Christmas break 2016 and the kids were home for a couple of weeks. Things were normal as usual, stress right before a holiday, scrambling to buy toys for cousins we forgot about (because they were only born 6-12 months ago and we don't see them much) and visiting with family and friends. My husband and I both work out of the home, and since the kids were on break, we were around the children much more than the usual 24/7 on the weekends.
The week before Christmas my son Carter had so many complaints. He's not a whiny kid by any means so this was unusual for him. He's actually the most compliant child I know. When I ask him to do something he does it. So when he first complained of a stomach ache I thought he was coming down with the flu. It seems reasonable that a child would get sick in December.
But everyday preceding that day he had a new complaint on top of the prior one. Next came dizziness, then headache. I asked him to drink more water to try and flush out the bad germs. The symptoms just continued to compound. So being the compliant child he is, he drank more water. Next he complained of being tired in the middle of the day. "Well you're going to be tired if you're getting sick." I said. Next he said his heart was racing at night when I tucked him into bed.
But everyday preceding that day he had a new complaint on top of the prior one. Next came dizziness, then headache. I asked him to drink more water to try and flush out the bad germs. The symptoms just continued to compound. So being the compliant child he is, he drank more water. Next he complained of being tired in the middle of the day. "Well you're going to be tired if you're getting sick." I said. Next he said his heart was racing at night when I tucked him into bed.
In the morning he said his legs were shaky and wobbly and it was hard to stand up. He had even wet the bed, which was strange because this kid never wets the bed. Later I will learn that this too was a sign of Type 1 diabetes. Children wet the bed because it's the bodies way of trying to secrete ketones from the body.
It was starting to become really weird at this point.
I mean he's got like 100 things wrong with him in such a short amount of time. I did like any other mother, who is tech savvy and results driven, would do. I went to Google and found WebMD symptom checker. I entered in his symptoms and diabetes came up as a possible diagnoses. I read the symptoms over and over and each time I dismissed the diagnoses because he didn't have extreme hunger, extreme thirst, weight loss, or vomiting.
It was starting to become really weird at this point.
I mean he's got like 100 things wrong with him in such a short amount of time. I did like any other mother, who is tech savvy and results driven, would do. I went to Google and found WebMD symptom checker. I entered in his symptoms and diabetes came up as a possible diagnoses. I read the symptoms over and over and each time I dismissed the diagnoses because he didn't have extreme hunger, extreme thirst, weight loss, or vomiting.
About every other or month or so I make a self diagnoses based on some random symptoms I have (mostly due to just getting older) and I'm convinced it's cancer, but it never is. So I wasn't very worried after reading the signs and symptoms of Type one Diabetes since we only had a few of the symptoms. I always have two or three symptoms of some horrible disease.
But during the week of December 26th he kept saying the symptoms were getting worse. He told me his heart was raising so fast he thought it was going to jump out of his chest. He said he had a headache all day prior and he woke up with the same pounding headache. I remember saying to him that morning, "Boy, that really sucks to fall asleep with a headache and to wake up with one." By this time I had gone online several times inputting symptoms and it kept coming back to T1D.
But during the week of December 26th he kept saying the symptoms were getting worse. He told me his heart was raising so fast he thought it was going to jump out of his chest. He said he had a headache all day prior and he woke up with the same pounding headache. I remember saying to him that morning, "Boy, that really sucks to fall asleep with a headache and to wake up with one." By this time I had gone online several times inputting symptoms and it kept coming back to T1D.
On Thursday, December 29, 2016 Carter started drinking a lot of water, and I was happy because we wanted to flush this bug out of his system. So I filled up a 32oz water bottle with ice and water. He literally came back 5 minutes later asking for more water. I remember looking at this in disbelief and asked I him if he dumped the water out, because I just filled it up. He said no, "I drank it all and I was really thirsty". So I gave him more water. I went about my work and didn't even think that thirst was one of the symptoms of Type one diabetes.
That evening my husband and I were watching a movie when Carter came running out of my bedroom shouting, "I've lost 4 pounds!" Now you may ask yourself why is a 7 year old weighing himself.
Well, we all weigh ourselves and during this kids routine well child check in October the doctor said that he would prefer Carter not gain any weight because his hope is that he would grow taller and thin out a bit. He's not a huge obese kid, but he is one of the youngest kids in his second grade class at 4' 5" and he's also one of the tallest. He's only about one foot shorter than his 11 year old brother. See my husband is 6' 4" tall so I was not at all concerned that Carter was going to be fatter then he was tall.
So it just meant that (his sucker for a mom had to tell him no, more than she said yes) we needed to cut back on sweets. Carter has a sweet tooth like his Dad. He loves Hershey's chocolate bars and slurpees (aka: slushy or icee). I'm a sucker and I have a hard time saying no to Carter because he's such a great kid! So we knew Carter weighed 80 pounds, he might fluctuate to 79 or 81 pounds but at 9pm he should be on the heavier side of the scale. I asked him to repeat himself and he said, "I've lost 4 pounds." I weigh 76 pounds now. At that moment I remember lifting my head from the couch, pausing the movie we were watching and saying to my husband, "I think he has diabetes." My husband asked me why I thought that, and I gave him all the reasons why. I told him that tomorrow I'm going to call my grandma (who is a Type 2 diabetic) and ask if I can borrow her blood glucose monitor.
So the next day I went out to call on my accounts and I got so busy I forgot to call my grandmother because I just got busy. When I got home around 11:30am Carter was still asleep. He fell asleep at around 9:30pm the night before. I remember because my husband took as picture of him. He had passed out on top of my desk watching Netflix or YouTube on the computer.
That evening my husband and I were watching a movie when Carter came running out of my bedroom shouting, "I've lost 4 pounds!" Now you may ask yourself why is a 7 year old weighing himself.
Well, we all weigh ourselves and during this kids routine well child check in October the doctor said that he would prefer Carter not gain any weight because his hope is that he would grow taller and thin out a bit. He's not a huge obese kid, but he is one of the youngest kids in his second grade class at 4' 5" and he's also one of the tallest. He's only about one foot shorter than his 11 year old brother. See my husband is 6' 4" tall so I was not at all concerned that Carter was going to be fatter then he was tall.
So it just meant that (his sucker for a mom had to tell him no, more than she said yes) we needed to cut back on sweets. Carter has a sweet tooth like his Dad. He loves Hershey's chocolate bars and slurpees (aka: slushy or icee). I'm a sucker and I have a hard time saying no to Carter because he's such a great kid! So we knew Carter weighed 80 pounds, he might fluctuate to 79 or 81 pounds but at 9pm he should be on the heavier side of the scale. I asked him to repeat himself and he said, "I've lost 4 pounds." I weigh 76 pounds now. At that moment I remember lifting my head from the couch, pausing the movie we were watching and saying to my husband, "I think he has diabetes." My husband asked me why I thought that, and I gave him all the reasons why. I told him that tomorrow I'm going to call my grandma (who is a Type 2 diabetic) and ask if I can borrow her blood glucose monitor.
So the next day I went out to call on my accounts and I got so busy I forgot to call my grandmother because I just got busy. When I got home around 11:30am Carter was still asleep. He fell asleep at around 9:30pm the night before. I remember because my husband took as picture of him. He had passed out on top of my desk watching Netflix or YouTube on the computer.
So I tried to wake him up but it was really hard. He was groggy and didn't want to wake up. Once he was finally woke up I told him that I didn't want him to eat anything until I was able to get grandma's monitor and test his blood sugar. He drank some water but understood what I was asking of him. He didn't complain or cry even though he was hungry. I called my grandmother and asked her to meet us at McDonald's for lunch & bring the meter. I think it was around 1:30 or 2:00pm when we finally met up & took his blood sugar. I pricked his finger and he said ouch, then added the strip and ran the test. His blood glucose said 251 fasting. I knew that was bad because when I was pregnant with him I had gestational diabetes. My blood glucose only ran about 120 from what I can recall, and I knew normal was around 100. I immediately started to panic. I was ready to leave and go immediately to the hospital and my grandmother said, "No wait, it's probably just an error on the machine. Why don't you let the boys eat and call your doctor's office and tell them what's going on and see if they can see him today?" Reluctantly I took her advice, because for a moment I didn't actually want my suspicion of diabetes diagnoses to be true. Later I found out that my grandmother knew that they was nothing wrong with the meter, but she could hear the panic in my voice and see the fear on my face when I read the number out loud. I immediately called the doctor's office and explained the situation. They said I could get in at 4:15pm that day. I took the appointment because I still had work to complete from the morning, and two hours is enough time for the food to digest, and to get a better reading on the blood sugar. After I hung up at with the doctor's office I ate my salad and my son ate his chicken nuggets and drank his diet soda. I was so worried thinking what if, what if he has diabetes? Before lunch was finished the boys asked if they could get an ice cream cone. I said of course you can. After about 4-5 licks of the ice cream cone Carter immediately said he didn't feel good and said that he was going to throw up. I rushed him to the restroom at McDonald's and rubbed his back while he leaned over the toilet. He was dry heaving and he didn't actually throw up but you could see the pale color in his face and the hopelessness look in his eyes. He then used the restroom to urinate and I escorted him to the car hoping the fresh air would help. After I arrived home things were just as normal as they ever were. The boys went outside to play and I finished up my work. Before I knew it, it was 4 o'clock and time for our appointment. The doctor's office is just five minutes from the home so we dashed over there. At this point I was almost questioning myself. Carter was literally jumping up-and-down couldn't stand still and acting like a kid on a sugar high. Was he fine, was I overreacting, am I being a crazy parent? We got in the car and drove to the doctor's office.
Once we checked in at the doctor's office Carter was immediately very thirsty. I remember going down to the car and grabbing his tumbler from the car and filling it up with water in the doctor's office. While we waited he drink 8 ounces of water over and over again in the course of minutes. While we were in the exam room Carter went to the bathroom three times. The doctor came in and asked me what had been going on with Carter. I explained the situation to her and why I had suspicions of diabetes. She told me that she had treated children before who had diabetes and she said by looking at him today he looked fine. He didn't not look like a child who had type one diabetes. After many questions she said, "Ok, I'm going to have my MA come in and test his blood glucose, and I'm sure we will be sending you home for a nice long holiday weekend." I thanked her for her time and again was doubtful that there was anything wrong with him. She literally just told me he doesn't look like he has diabetes. Oh great! Now they are going to think I'm that crazy parent who brings their kid in for any little thing. Later I would further understand what she meant when she said he doesn't look like he has diabetes. What she meant was he doesn't look like a kid who is in Diabetic ketoacidosis or DKA. A new term I will lean and hear more about.
It was right before the holiday weekend and the new year around 4:45pm Friday, December 30, 2017. The medical assistant walked into the room and said, "OK, we're going to get your blood sugar now. Have you had your finger poked before?" She asked Carter. He said, "Yes, this afternoon my mom poked me." She then poked his finger and held up the meter with the strip inserted and touched his finger. We waited for the countdown 3,2,1. Silence filled the room, and nothing. Nothing showed up on the meter. I was so confused I've never seen a blood glucose meter not give you a number after reading. It only said High Glucose. I looked at the medical assistant asked her, "Why doesn't the meter give us a number, is something wrong." She said, "The only time the meter doesn't give a number is when it's over 600, his blood glucose is higher than what the meter can read." The medical assistant immediately left the room, closing the door behind her. I knew right then and there that he had diabetes. My heart was racing and I was frantic but I waited there patiently for the doctor to come back into the room. It felt like forever. She looked at me and put her hands on my shoulders and closed her eyes and said, "I am so sorry, but your son has Type one Diabetes and you need to take him immediately downtown to the Sacred Heart Children's Hospital. She uttered some words like I'm sorry I didn't actually think he had diabetes, he appears fine. Children who are in DKA are usually very ill and non-responsive. I think we caught it early enough, now go.
My older son Tucker was at home with a friend and my husband was working at a wine tasting about 10 minutes from our home. I immediately left the doctor's office and called my husband and told him that we were headed to the hospital and to meet us there. I almost forgot to tell him that he needed to grab our son who is still at home. I remember driving to the hospital and getting there almost in tears but in disbelief and shock. I checked in and they said we were expecting you. It was only minutes before we sat down and we're back in bed he emergency room getting vitals taken. I have to admit I did not know everything about Type one Diabetes. I literally thought that some people just had diabetes worse than others. I knew some people needed insulin and others took pills to manage their diabetes.
I only had personal experience with gestational diabetes, and a close friend in my 20's who was originally wrongly diagnosed with type 2 to only later find out she was a Type one Diabetic. I knew what her symptoms were because we were on vacation in Hawaii when she began to not feel well and was extremely thirsty and using the restroom a lot. It's probably that knowledge that helped me diagnose Carter as early as I did. Having gestational diabetes for me meant I needed to check my blood sugar every day, keep track of my food intake while tracking my blood glucose and eating healthy and keeping the carb ratio down and taking a pill once a day. Little did I know that there were no pills in Carter's future. I had no idea what the future held for myself for my son, and for our family. When they tested Carter's BG at the hospital it was 560 I believe, it had dropped a bit. It felt like forever that we waited for a room at the hospital. It was no surprise he had Type one Diabetes, but the doctor who delivered the news said something like, "Your son has Type one Diabetes, you're going to stay the night, probably the weekend and we are getting a room ready for you. Do you have any questions?" Do I have any questions, are you kidding me, yes, a ton. But I didn't know what questions to ask. Have you ever heard the saying - You don't know what you don't know? So while we waited from about 6:00-11:30pm I Googled T1D trying to learn as much information as possible about the disease. I remember being irritated because from everything I was reading this was very serious, life threatening even, and my kids and husband were all playing video games on their cell phones and tablets. Maybe it was my husband's way of dealing with a bad situation, just ignoring it, or maybe he didn't care. Whatever the answer was I didn't care. I was in "mama bear" mode and I wanted to figure out what I needed to do to fix my son. I guess it made me mad because my husband didn't make any effort to investigate what could be done to fix our son.
We finally arrived to our room around midnight. Our family didn't eat dinner because we had been at the hospital since 6pm that night and we just got to our room. My husband and children were starving. So they left to get food and came back to deliver me some sushi and drinks. They gave Carter some string cheese and crackers and he fell asleep. I remember the nurses were so nice and kind. I asked a ton of questions and stayed awake with the lights on until probably 2am. Needless to say I couldn't get much sleep at all. It was 7am before I remember falling asleep and my husband and oldest son arrived the next morning around 9:30am. Who knew that this sleepless night was only the start of many sleepless nights to come.
Video above is Carter learning how to take his blood sugar for the first time in the hospital.
#T1DProblems
Know the signs of Type 1 Diabetes.
What to look for: Symptoms of type 1 diabetes in children
One of the early signs of diabetes in children is increased urination and thirst. When blood-sugar is high it triggers a reaction in the body that pulls fluid from tissues. This will leave your son or daughter constantly thirsty, resulting in a need for more bathroom breaks throughout the day. Below are some other warning signs that you should be aware of.
Fatigue: If your child is constantly tired it may be a sign that his or her body is having trouble turning sugar in the bloodstream into energy.
Changes in vision: High blood sugar levels can lead to blurred vision or other eyesight problems.
Fruity smelling breath: If your kid’s breath smells fruity, it could be a result of excess sugar in the blood.
Extreme hunger and unexplained weight loss: When your son or daughter’s muscles and organs aren’t receiving enough energy, it can trigger extreme hunger. And sudden weight loss—especially if he or she is eating more—should not be ignored.
Unusual behavior: If your child seems more moody or restless than normal—and it’s in conjunction with the symptoms above—it could be cause for concern.
http://www.jdrf.org/t1d-resources/symptoms/
XOXO,
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