5 Years Old: The Unexpected Diagnosis of Type 1 Diabetes
May 26th 2021 changed our lives forever.
As a mother, you always want the best for your children. ❤️ You work tirelessly to provide them with everything they need to grow up healthy and happy. You make sure they eat well 🍎, get enough rest 💤, and stay active 🏃. But sometimes, no matter how hard you try, life throws you a curveball that you could never have expected. 😔 That's what happened to us when my son, Andrew was diagnosed with type 1 diabetes (T1D) at the age of 5.
My intention for this blog is to share our story in hopes of spreading awareness 📢, and to help other mamas who may find themselves in a similar situation. For those of you who may be needing some extra guidance and encouragement through this rough transition, you WILL get through this and you are not alone. (Please feel free to reach out privately)
What is Type 1 Diabetes?
I guess before we start, we should probably define what Type 1 Diabetes is… According to the Cleveland Clinic, Type 1 Diabetes is defined as, ”an autoimmune disease in which your immune system attacks the insulin-producing cells in your pancreas for unknown reasons. Your pancreas can no longer produce insulin. At diagnosis, people with Type 1 diabetes usually have very high blood glucose (200 mg/dL, or 11.1 mmol/L, or higher).”
Many times they say this disease is triggered by a virus 🦠. Now, there is no way of knowing for sure if this was Andrew’s trigger, but Andrew had the V . I . D (if you know what I mean) in early January of 2021 and after that was when we started noticing slowly over time changes in his behaviors and body. Whether that was the exact trigger or not, we can’t really say, 🤷♀️ however that was the most recent virus to his diagnosis.
Ok, now back to our personal story.
It was May 26th 2021, three days before our oldest son’s 8th birthday 🎁. When our middle kiddo, Andrew was acting extremely lethargic 🥱 and moody beyond belief. My motherly instincts told me something was wrong when he refused to play with his friends at our homeschool co-op. 😔 (There was definitely a build up to this point and I will share all the symptoms later in this blog) Andrew is normally a fun-loving, high-energy kid, so this behavior was very out of the norm for him and combined with his months of symptoms prior my mama gut just told me RED FLAG! 🚩
I sat down and made a list of all of his symptoms and immediately my nursing brain kept saying DIABETES, but I thought “there is no way!” “How could my sweet little FIVE year old have diabetes?” So I started searching the internet for other possibilities (I know this is the worst thing to do 🤦♀️ but let’s be real, we all do it). Anyway… I kept coming back to diabetes, so when my husband got home I told him my thoughts, I told him how Andrew had been acting that day, and that I was concerned.
Now, my husband at the time was on a Keto diet 🥩 and had a meter at home that tested blood glucose and ketones, so I suggested that “although it was crazy, we just test him to see”. So we did and...
when I looked at the meter results and saw that Andrew's blood sugar was 653 my heart sank into my chest 💔
For reference, the normal blood glucose range according to the Cleveland Clinic is between is 70-99.
I immediately knew that my baby had diabetes 😫😭. My nursing background affirmed to me that this was 100% happening and there would be no other reason for a five year old’s sugar to be that high. There was no longer any guessing.
We immediately called his pediatrician whom made us an appointment for the next morning 🙄 - I knew they would call back in 5 minutes - which they did, and we brought him right in. They tested his sugar again and their glucometer at the office didn’t even pick up a number, it just read HIGH in big letters. They told us to go home, pack bags, and that we would be spending the next few days at the hospital. 😩 We were in the hospital for 2 days.
As I am writing this blog May is right around the corner, and this year will mark two years after his T1D diagnosis. He is currently doing really well and has come a long way, 👏🙏 but before we talk about all of that I would like to take it back a few notches and go back to what his symptoms were leading up to his diagnosis.
I think this is really important to talk about in order to educate mamas everywhere.
T1D is an autoimmune disease that can affect anyone at any age!
It typically is genetic in nature, but not in all cases. In the rare occasion you are ever noticing these symptoms in your kiddo(s), please express your concerns with your pediatrician 🧑⚕️ and advocate that they be tested right away! It’s a simple finger prick and takes only seconds. 🩸
Symptoms of Type I Diabetes:
- Frequent urination
- Increased thirst
- Weight loss
- Mood changes
- Feeling lethargic after meals
- Blurred vision
As I said earlier, symptoms for Andrew were a slow progression and then all of the sudden it was undeniable something was wrong. In Andrew’s case, the weight loss, lethargy, and mood changes seemed to have a slow progression and were difficult to differentiate from normal growth spurts, and child development. 🧐
However, when the increased thirst 🥤 and frequent urination kicked it, it was pretty evident that something was not quite right. When I say he had increased thirst I mean, he was crying saying he was going to die if he didn’t have a water with him for a 10 minute car ride 😳. Then when he got a water he would chug the entire bottle 💧. Then, he was needing to pee a LOT and was having accidents daily 😖, including wetting the bed at night. These symptoms for us really amped up when we took a family trip to Arizona in April of 2021, which made it hard to recognize because we just assumed the dry heat in AZ (unlike what we have in NY) was the culprit. When we got back home and the symptoms persisted we were much more concerned.
Ok, fast forward back to the hospital…
Those two days in the hospital felt like I was being tossed around in a tornado 🌪️ of emotions. I felt sad, upset, scared, frustrated, confused, and overwhelmed all at once. I cried A LOT 😭 - I didn’t cry in front of Andrew because he was already scared and I knew I had to stay strong for him, but you bet your butt, when I was alone at night I cried and cried. Heck, I cried again while writing this blog. I still find myself crying from time to time when I allow myself to wallow in the “why him” energy 😩, so I do my best to quickly pick myself up from that. However, I do think allowing yourself to “grieve” is important. And by grieve I mean grieve that “normal” childhood you assumed your child would have. Releasing emotions is a normal physiological response and bottling it all up can be just as harmful as wallowing. (PS. I have some great essential oils to help with this, if that is something you are interested in!)
While at the hospital, Andrew was started on MDI (multiple daily injections) of Insulin 💉. Almost immediately we started to see our Andrew coming back to us. 🙏 ❤️
The doctors and nurses taught us about things like:
🥞 carb counting
➗ insulin ratios
🧃 how to treat lows (dangerously low blood glucose levels due to too much insulin)
🩸 how to check his blood sugar
💉 how to inject insulin properly
✨ and so much more
Luckily I was pretty familiar with the insulin aspect from my nursing background 👩🏼⚕️, but I had very little experience with carb counting as all of the patients I had taken care of were Type II Diabetics. Luckily with my husband being on a Keto diet he was good with the carb counting, so together we had a decent handle on things. To this day I am so grateful for that 🙏, as I know most people going through this do not have that luxury. 😔
If you are interested in learning more about the difference between Type 1 and Type II, check out this article.
The hospital staff did a great job, but learning how to manage Type I Diabetes in two days was extremely overwhelming. It is A LOT to take in on top of being in shock that your child now has this life-long disease where he will forever be dependent on medication to stay alive.
>> Again, if you are going through this yourself you are not alone! And maybe it’s not you who is going through it, but a family member or friend, please feel free to reach out to me. I have lots of resources that I have gathered and am happy to share!
So, after two days (by-the-way we did end up making it home just in time for Danny’s 8th birthday 🥳 👏 ) we may have left the hospital to resume our “normal” life, but the reality was that life would never be “normal” again. Diabetes is a full-time, life-long disease that in truth affects the entire family! We can certainly do our best to make things as close to normal as possible for him, but the reality is that there are so many extra decisions he must make and so many things he must now pay attention to that most people do not. 😔
The next few weeks after returning home were a blur of doctor's appointments, blood tests, giving insulin injections, and learning all that I could about this disease. I felt like I was in a constant state of panic, always worrying that I was doing something wrong or that my son's blood sugar levels were getting out of control. But despite my fears, Andrew was remarkably resilient 👊. He took his injections like a champ 💪 and quickly picked up on his new routines around eating. 🍽️ (This blog isn’t about Celiac, so I wont go into detail - maybe in another blog - however, while Andrew was in the hospital for his diabetes diagnosis one of the other autoimmune markers that they test for is celiac disease, and his levels came back about 2 weeks after his type one diagnosis of being highly indicative of him having celiac 😩) So when I say Andrew has been resilient 👊, I mean it.. he seriously has been such a trooper with all of the changes, diet restrictions, and medical routines that were all at once implemented into his life.
I am beyond proud of how strong and brave he is!
As time went on:
🤝 we connected more with the local T1D community (I highly recommend!)
🗓️ we settled into a routine
➗ we learned how to count carbs and adjust insulin doses based on his blood sugar levels
📈 we learned how to recognize the signs of high or low blood sugar and how to treat them - Including encouraging Andrew to really listen to his body and pay more attention to how he feels when he is high, low, or dropping/rising quickly.
🍬 we learned how important it is to pack snacks and emergency supplies for every outing!
But even as we became more comfortable with diabetes management, it never became easy. Every meal 🌮, every snack 🥨, every activity 🚴🏼 requires planning and vigilance. We have to constantly monitor his blood sugar levels and adjust our plans accordingly. We have to be prepared for emergencies at all times❗️ This also included teaching 📚 our close family and friends what to watch for and be prepared with. Like I said before, this diagnosis really does affect the whole family.
One of the biggest sources of comfort and security ❤️ for us has been the medical T1D technology. 🙏 The Dexcom CGM (continuous glucose monitor) and Tandem tSlim insulin pump have been lifesavers for our family.
We advocated pretty strongly for him to get the Dexcom as quickly as possible after diagnosis. This device, if you aren’t familiar is a device that is inserted under the skin and continuously reads his sugar levels. 🩸 It gets changed every 10 days, and it certainly isn’t perfect, but it is seriously incredible for diabetes management! I am able to, from my Apple Watch, computer, or iPhone see what Andrew's sugar levels are at all times! This brings so much peace 😌 to my mama heart, especially when he is not with me.
Then I think around 6 months after Andrew's diagnosis, we also decided to get him on an insulin pump. As I mentioned, he has the Tandem tSlim. His control with MDI 💉 was really great, however the pump allowed him much more ease and “normalcy.” As a young child, snacking 🍿 happens often and this really saved a lot of stress and arguments about getting yet another injection. His pump site gets changed every 2-3 days, but that sure as heck beats 4-6 injections a DAY! We are very happy with his tandem pump and the control it gives us keeping him in range.
There are a lot of struggles with T1D but in our home we are always talking about how grateful we are to have this T1D tech 🙏❤️ Without these tools, managing Andrew's diabetes would be much more challenging and stressful.
Along with the challenges and new changes, there were also moments of triumph…
📉 When my son's A1C levels (a measure of average blood sugar over a 3 month time period) came down to a 6.5 from his original diagnosis of 14.6 (for reference, normal is less than 5.7, pre-diabetes is less than 6.5). With this I felt a sense of pride, accomplishment 👏, relief, and gratitude 🫶🏻.
🩸 When Andrew learned how to check his blood glucose levels himself, I was amazed by his bravery.
➕ When he learned how to count carbs and measure out his own meals including calculating the amount of insulin needed on his own, I was truly in awe of his independence.
🏕️ And when we were able to enjoy a family vacation to Vermont just ONE month after his diagnosis without any diabetes-related incidents, I felt like we had conquered the world. 🙌🌎
Through it all, I have learned a lot about diabetes, about myself, and about Andrew.
- I have learned that diabetes is not a punishment or a sign of weakness, but simply a medical condition that requires careful management.
- I have learned that my son is stronger and more resilient than I ever imagined
- that I am capable of more than I ever thought possible.
- I have learned that there is no one "right" way to manage diabetes, and that every family's journey is different.
As my son approaches his 8th birthday this July, I can't believe how much we have been through in the past two years. We have faced challenges that I never could have imagined, but we have also experienced moments of strength and resilience that have left me in awe. 🫶🏻
In Summary...
When Andrew was diagnosed with type 1 diabetes at just 5 years old, our lives were turned upside down 🙃. We were suddenly thrust into a world of finger pricks 🩸, insulin injections 💉, and constant monitoring of his blood sugar levels 📈. It was overwhelming, to say the least. But with the help of our medical team and the support of family and friends, we have adapted to our new normal and are grateful for every moment we have together.
As we look toward the future, I know that there will be more challenges to face. But I also know that we have the strength and resilience to face them head-on 👊. Watching Andrew navigate life with type 1 diabetes has been an inspiration to me, and I am so proud of the way he handles everything with such maturity for his age. We may not have asked for this journey, but we are grateful for every lesson it has taught us, and every moment that it has brought us closer together as a family. ❤️
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For other mamas who may be facing a similar journey, my advice would be to take it one day at a time. There will be good days and bad days, but with the right mindset and the right tools, you can navigate this journey successfully. Lean on your family and friends for support, and never hesitate to ask for help when you need it. And above all, cherish the moments you have with your child.
Despite the challenges, life with type 1 diabetes can still be full of joy, laughter, and love.
>> If you, or someone you know is going through their own type one diagnosis please reach out to me and I would be happy to chat and connect you with some resources that I have compiled since Andrew's diagnosis.
Until next time,
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DISCLAIMER: These statements have not been evaluated by the Food and Drug Administration. Any information provided to you on this site is for educational purposes only. I am not a doctor. I am not in any way diagnosing, treating, prescribing, or claiming to cure anything. Any and all medical ailments/treatment plans should always be consulted with your physician. This information is my own personal experiences and personal research. You should always do your own research and decide with your physician what is best for you.
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