The Journey to a Diabetic Diagnosis – How Our Son Was Diagnosed with Type 1 Diabetes

Our son has diabetes. He was diagnosed in January 2021. This article will explain our diabetic diagnosis story.

This experience towards a diabetic diagnosis has been life-changing and will be a never ending journey. My hope is that we can help other families, whether your own child is diagnosed or do you have a loved one with a diabetic diagnosis and you are looking to learn more about it.

I do want to have more content here on RSM about having a child with type one diabetes, in hopes to help this community of parents. There have been significantly higher new diagnoses, particularly since the start of COVID-19, and I’ll talk a little bit about that. But most of this article will explain our personal experience as far as the symptoms we were noticing, and the journey that led to us going to the ER and receiving a diabetic diagnosis. 

If you’d like to Real Simple Mama tell you this story instead, you can find the YouTube version of this article here.

Finally, please remember that I am not a medical professional, this article is our personal experience. We are parents who love our son very much and would do anything to help him. I am also not affiliated with any particular group or company and I am not paid by anybody.

So let’s get started. We are a healthy, active family with a mom, a dad, a seven year old son we’ll call Kiddo, and a five year old daughter. We are really into plants and gardening, and our chickens of course, and we are pretty health-conscious as far as diet is concerned. My kids love to try new foods and are not picky at all. We have been virtual schooling through a public school district since the pandemic started in spring of 2020, so my kids have not been out exposed to many people.

I am very lucky that I have been able to stay at home with my children since my daughter was born; one thing that maybe hurt us in this situation was because I am with my son all day every day, I did not notice anything unusual until probably mid January 2021. The first symptom that we noticed with our kid was that he was extremely fatigued.

Seeing a young child who is healthy and active suddenly lose energy is terrifying by itself. But being analytical, we got down to the bottom of it and realized that he was probably tired because he was getting up multiple times a night to go pee. We figured that was an easy solution right? Just make him stop drinking water after dinner! But I did not fix the problem, he kept being more tired to the point that he would ask to log out of school and lay down during the day.

The next thing we realized was that he was probably drinking a lot more water throughout the day then we had first thought. Our son is tall enough to fill up his own water cup. That means that because he can do it by himself, I was not always seeing how often he was getting a refill. 

On Wednesday, January 20, Kiddo again had asked if he could lay down during his last subject of the day, and he just laid on the couch for the afternoon. This was not a situation where he wanted to get out of school so that he could play around, but rather he literally did not have the energy to pay attention in class. I also noticed that he was continuing to drink water but he did not have much of an appetite. This was extremely unusual for our slender but voracious kid!

At this point I was definitely worried that something was going on, so I checked his temperature but it was not elevated at all, and he also did not have any kind of cough or nasal drainage. It was extremely unusual but by evening he perked back up and was able to eat with a normal appetite.

The next day was pretty uneventful but then Friday, January 22, which was the day we ended up going to the ER, this is what happened. He made it through class until about 10 AM and asked me again if he could lay down on the couch, where he remained for pretty much the rest of the day. I started a bland diet on him to try to get him to eat something that would not make him feel worse, but again he did not have much of an appetite. He also complained that his legs hurt, particularly from the knees down. I tried to let him soak his feet in a foot spa and I gave him a leg massage but it did not help him.

Then the headache started, for which I gave him some children’s Motrin. That seemed to brighten him a little bit but he still did not feel well. I started to notice that his color was not right, he had really dark circles under his eyes and his face looked gaunt. He looked bony and skinny the more I looked at him, and I became terrified. So I called his doctor and made an appointment to get him in the following Monday.

Before bed I had him step on the scale and sure enough, instead of being about 50 pounds he was closer to 40. We put him to bed and then called the on-call pediatrician. She was absolutely wonderful, she recommended that we take him to the hospital that night. She told us which facility to go to, and she called ahead to have everything ready for us. She didn’t want us to wait because she guessed that he had undiagnosed (and thus untreated) diabetes, and possibly diabetic ketoacidosis (DKA). I scrambled to get dressed and pack what I thought I would need for an overnight trip, and we woke up our son.

Kiddo had already been asleep, and we woke him in a calm manner to tell him that I was going to take him to a doctor; he did vomit upon waking up. (We can never be sure if that had anything to do with the ketoacidosis or if it was unrelated, but please keep that in mind as an additional possible symptom.) We got him dressed, grabbed his water cup and his iPad, and left for the hospital as soon as possible.

I will say here that it was extremely important for me that I not let him get freaked out, so I spoke to him quietly as I drove even though I was completely panicked inside. My mantra was to stay calm and positive throughout the experience. I let him know that we were technically going to an emergency room but that he did not need to worry about the fact that it said “emergency“, it was just the only place that was open that type of night. I had no idea what was in store for us but I didn’t know that I wanted him to be calm and not scared at all.

We made it to the hospital a little after 9:30 PM, luckily that wonderful pediatrician had called everything over so the nurses were ready to go and we did not have to wait. We got him into a hospital bed on the ER floor and the nurse checked his blood sugar level. They also put a bendable catheter in Kiddo’s arm and started monitoring him. Pretty quickly we were aware that they were going to admit us.

I believe we got the official diabetic diagnosis around midnight that night; while we had not gotten all of his blood work back, the logical explanation for his symptoms and crazy high blood sugar was that his body’s diabetes had “woken up” and activated, but we hadn’t been treating him because of course we didn’t know. Official blood work results confirmed the diagnosis a few days later when we met with his pediatric endocrinologist.

A sidenote here: a healthy blood sugar is probably between 90 and 160 if you do a finger poke and check the blood glucose; when we got to the hospital my son was at 619. 

The reason my son was exhibiting those symptoms, like fatigue and excessive thirst and frequent urination and weight loss, is because his pancreas was not doing its job in creating insulin proportionate to the carbs he was taking in. The liver thinks that it is trying to help but makes things worse, and essentially your blood is poisoning itself and your body is freaking out. So it makes you more thirsty to try and flush it out, and you are peeing more often, but your body is starving itself and your blood is turning to acid.

Unfortunately for a diabetic, your body is not able to keep that balance on its own. One of the ER doctors had told us that if you had touched a drop of Kiddo’s urine or smelled it, it would have been sticky and sweet smelling like Kool-Aid.

Type one diabetes is genetic; we do not know why it activated in our son when it did. Usually the diabetes will “wake up” when your body goes through a trauma, whether you break a bone or contract a virus. Please understand that a type one diabetic was always going to be a type one diabetic, and you as a parent or caregiver did not do anything wrong. It is part of their DNA and was inevitable.

I ended up being in the hospital with my son for a total of five days, we were in the pediatric ICU for half of that and then we moved into the pediatric hospital unit for the rest of the time. The beginning was the scariest part because not only did we have a new diagnosis of type one juvenile diabetes, but because my son had such high glucose levels he was also in ketoacidosis. This is what I was talking about earlier, a separate temporary condition when your blood is extremely acidic and starting to poison your body. So the immediate goal upon being admitted to the hospital was getting his blood glucose level back down to a healthy level, which meant giving him fluids in an IV and flushing out his blood. He had all of the monitors on his body to check all of his vitals, and we measured how much he peed for the first few days until the ketoacidosis was resolved. 

Remember to do your own research so you understand how to check ketones in the future and what ketoacidosis is, because it is extremely dangerous and can be fatal if untreated.

After the threat of ketoacidosis complications was over and he was in the clear, we did begin treating him with insulin and monitoring how many carbs he was eating at each meal.

I will do a separate article that you can find here in regards to the details of our hospital stay, but the goals we had to meet in order to leave were: be out of danger from keto acidosis, learn what the carb ratios would be for dosing insulin, keep his levels steady during the day and through the night, and for me to prove to the nurses and staff that I could dose and treat my son on my own at home.

My son got his diabetic diagnosis exactly 2 months today, and it has been an extremely emotional journey which is not over yet. It has been very difficult because of the pandemic as well, and the diabetic diagnosis and hospital stay was traumatic for our family. It does give me consolation to help families with this diagnosis and with all kinds of tips and tricks to help treat type one diabetes, so check back here and on my YouTube channel on a regular basis as I will have special sections on each.

Finally, please know that I am here for you, I promise. This disease can be a nightmare, isolating and stressful for everyone. We all cope in our own ways and we are going to continue to go through the different phases of emotions, from being frustrated and crying and screaming to just been tired and done with it all. 

I welcome your comments or questions, and you can always email me. If you’re still here with me, then it is because your heart understands what I am saying. And I will always help however I can. 

Symptoms we noticed before an official diabetic diagnosis:

• Extreme fatigue
• Excessive thirst
• Excessive urination
• Weight loss
• Lower body pain

If you can donate to help families who have a new diabetic diagnosis, or to help find a cure for Type 1 Diabetes, please visit the Juvenile Diabetes Research Foundation.

And the fantastic care package, seen in the title photo, is from Little Tiny Tony’s Project, a nonprofit who sends gifts to T1D kids. Please support them too.

And we look forward to seeing you on our YouTube channel where we have honest helpful content.