The following is the story on our son’s Type 1 Diabetes diagnosis story in hopes that it will help even one person recognize the symptoms in a loved one someday. Because it’s one of those diseases that are all too common and is oven misdiagnosed because the symptoms can be easily explained away or be attributed to other things.
Most kids are near death, like my son was before they finally get a diagnosis. Unfortunately, even doctors often misdiagnosis Type 1 Diabetes. Many of the people I know that were diagnosed were diagnosed because someone who knew the symptoms wasn’t afraid to speak up and suggest Type 1 Diabetes as a possibility.
The photo above is a picture of my sweet boy. My only son. He’s been a challenge over the years with numerous health problems, a pretty good temper, anxiety and a HUGE mama’s boy but there’s something about those you serve the most are those you love the most. I’m not saying I love him more than my other children, but he definitely has a sweet spot in my heart.
Until recently all his little health problems were just annoying, but that’s it. We’ve been able to help a lot of them with natural remedies. Those that know him publicly have no idea he had any problems. He’s the sweetest boy ever in public and all his school teachers just love him.
About two months ago he really started having a lot of issues and we couldn’t figure out what was wrong. He seemed to have high anxiety for no apparent reason. The normal things we used to treat his anxiety just weren’t working.
He seemed tense all the time, complained of his tummy and head hurting a lot and was very ornery when he would get hungry. He missed more school than he went to.
Just when we thought we were making progress, he started getting really bad. He started peeing the bed, going to the bathroom constantly, drinking constantly, eating tons of food – especially carbs – which is not like him.
Then the Saturday before Christmas break was going to end, he started throwing up. We thought it was a little weird because he had the stomach flu a few days earlier and threw up once and was done – so we thought we were good.
This time he threw up a little in the morning and through the day but the weird part was that he slept almost the entire day. This was not normal but we figured if he was sick and wanted to sleep it off, then great.
In the evening though when you would think he would be starting to pull out of it, he started throwing up repeatedly and it was mostly just water he was throwing up. We couldn’t figure out where all the water was coming from since he hadn’t been able to keep anything down all day.
We figured he was getting dehydrated so I went to the health food store and got some packets of electrolyte drinks for him to try to sip on. The drink just made him throw up more.
He finally seemed to settle down and went to sleep for the night but around 4am, I heard him up and walking around but then I heard him go back to bed. This isn’t unusual for him because he often has really bad dreams and gets up and gets a drink and goes back to bed.
I kept drifting in and out of sleep until around 5 am when I heard him screaming a really weird scream. I ran to his room and he was holding his heart saying his heart hurt really bad. I could feel his heart beating really hard in his chest.
He said he just needed to calm down and just wanted me to snuggle with him. I snuggled with him for a few hours trying to calm him down.
He would go in and out of sleeping weirdly with his eyes half open and then screaming and then doing this weird breathing thing. Looking back, I obviously should have gone to the hospital right away but I honestly thought it was an anxiety attack. Plus I was too tired to think straight.
After a few hours I got out my phone and found an article on anxiety symptoms and it sounded like what he had but he seemed to be getting worse right when I thought he was getting better. He was starting to talk incoherently and his eyes were rolling back in his head.
I was really starting to get worried. My husband started getting ready to take him to the hospital. Then I was reading the anxiety article a little more and it said that anxiety attacks could be caused by low blood sugar. Duh….
He hadn’t eaten since Friday night so his blood sugar was probably low. My husband has Type II Diabetes, which he treats naturally, but he’s vigilant about checking his blood so we figured we may as well check our son’s blood sugar levels.
The second we did and saw that he was at 456, we knew he was in big trouble. I called my mom and she ran over and got the girls and we rushed him to the hospital.
At the hospital, they told us he was in Severe Diabetic Ketoacidosis (DKA). You can read more about what that actually is in this Wikipedia article. But basically, when you are a Type I Diabetic, your pancreas is slowly shutting down for several months and you don’t know it.
It slowly loses it functions until it hits the magical point of only functioning at 10% of normal. At this point, your pancreas isn’t working properly. It’s barely producing any insulin so your blood sugar shoots way up.
After being really high for a while, your PH starts going down really low and your body starts to shut down. He was severely dehydrated. His skin was all white and he was noticeably thinner.
They had a really hard time getting an IV going in him. They finally got one but it didn’t seem very promising. It was bubbling and threatened to go bad, but they kept playing with it and turning it off and on and finally got one good IV but they couldn’t get another.
They wanted to get a second IV so they could use it to draw blood so they could run labs. When he first got there, they managed to get a good amount of blood out of him and ran a bunch of tests.
After what seemed like forever, they were finally able to add some insulin to his IV so his blood sugar could slowly start coming down but they didn’t want it to come down too fast.
What happens is if it comes down too fast is that it can cause brain swelling and that’s not good. About 1% of these cases are fatal but our son was especially bad so they were definitely concerned about it.
Plus, at this point, it becomes about much more than just getting his blood sugar down. It’s about getting his PH back down to the normal range and getting his minerals, like potassium and magnesium back up.
Since they weren’t able to do blood work to determine if he was improving or not (since the outside signs were that he was basically sleeping and barely responding to the doctors really on him asking him what his name was), they decided we better take a helicopter ride to Primary Children’s Hospital in Salt Lake.
It’s about a 20-minute helicopter ride. Something I didn’t tell you about our son is that he LOVES airplanes and helicopters. I mean, he’s obsessed with them. He wants to fly jets in the military when he gets older.
I was so sad that he actually got to ride in a helicopter but was out of it the whole time. Right after we landed and they were taking him out of the helicopter, he did sit up and look around for a few seconds and acted like he didn’t know where he was.
When we later told him about the helicopter ride, he said he thought he vaguely remembered a dream about a helicopter ride. After getting to the Children’s hospital, it was just endless doctors and nurses, texting, calls home and watching my son lay there on the bed.
They told me his numbers were starting to do better but he didn’t act better to me. They said that probably by the next morning he would wake up. It’s so hard to go to sleep when your son isn’t doing well but I was so tired and I knew I better sleep while I could so I went to bed around 10 pm.
Around midnight he woke me up cause he sat up and looked around but before I could get to him, he laid back down. He did that again about an hour later. At that point, I could tell by the way he looked at me that he was starting to come out of it.
He slept very restlessly after that but I slept soundly. Around 4 am I could hear quiet talking and couldn’t figure out where it was coming from. Then I realized it was our son talking to the nurse! He was awake! And not just for a minute.
He stayed awake for several hours. He acted pretty much like normal, except the fun things like all the wires and tubes coming out of him. He was bored (of course) and wanted me to sit and look at him.
He was absolutely starving but they said he couldn’t eat anything and wouldn’t be able to eat anything for a long time. He finally said I could take a little nap around 7 am.
He only let me sleep for about 10 minutes but that was enough to take the edge off. Then it was constant doctors and nurses again until we finally got to move to the regular floor that afternoon and he finally got to eat.
And he ate and ate. He had two days worth of food in one afternoon and evening. He would have kept eating but they closed room service.
That night we both slept soundly and then for the next two days it was lots of training and education and trying to keep him entertained. He was extra sweet to me and we had a few moments of sweetness, like snuggling on the bed and watching a movie. We both have good memories of that. Makes a tear come to my eye just thinking about it.
Then we came home and it’s been constant chaos ever since. The doctor wanted him to go back to school the next day but he really didn’t feel good. We waited a few days then went back to the school and talked to the office, the nurse and his teacher. The nurse taught his class about diabetes.
What does this mean in my daily life right now? He tests his blood 4 times a day to see if it’s too high or too low. If it’s too high, then he needs a correcting dose to bring it down. Then every time he eats, we have to calculate how many carbs the meal has and give him enough insulin for it. He also gets a shot once a day of a long-acting insulin. So that’s a minimum of 5 needle pricks a day, often many more.