When our daughter was in the Emergency room, waiting on an open bed for pediatric intensive care… things moved along quickly! Doctors stopped knocking on the door and began appearing! Undiagnosed Type 1 diabetes. We were clueless. We found out our daughter’s blood sugar level was dangerously high. In fact the meter in the Emergency room used to check her blood sugar wouldn’t read her exact blood sugar level.This information meant nothing to any of us. I vaguely remember seeing a nurse prick her finger out of the corner of my eye and didn’t think anything of it. The nurse shared with us that they did not know her blood sugar level because she was over seven hundred. I quickly ask “OK what does that mean”? To which I got an answer that I didn’t understand. “She is in DKA”! I remember in the hospital having to Google the terminology.
The endocrinologist on duty started drawing a Pancreas on a whiteboard which up until that point I had not even noticed! He was explaining that out daughter’s pancreas no longer functioned and was not making insulin. I felt like my head was underwater you know the teacher in Charlie Brown, you hear talking sounds but you can’t make out the words that’s exactly how I felt! I believe the endocrinologist on duty must have seen the look of horror on our faces and in his own way he tried to soften the blow he said “Unfortunately many parents find out in this way”! Even then I understood what that meant. Time is crucial for a safe diagnosis. I thought this is why she’s so sick. Fix her! Make her better!
Once I understood this is not going away this is a lifelong Autoimmune disease. She will need to inject insulin for the rest of her life to live! I thought well she gets to live with Type 1. Many parents find out to late. Just like us they didn’t know or recognize the signs leading up to the diagnosis.
Tired, thirsty, moody, headache, increase in urination. All classic signs of Type 1. Which I have since learned is diagnosed with a finger prick. The last few months now made sense! Parents of newly diagnosed children I understand the guilt of not knowing and or feeling like you didn’t protect your child.
My daughter will celebrate her three-year diagnosis in October. It gets better! I can promise you that. My advice in the beginning when you are thrust into this new life of counting carbs and monitoring blood sugar numbers is to take one meal at a time if you have to. Then even one day at a time was too much for me. Also on some days Type one does not play nice and sometimes it doesn’t make sense flexibility is required for this disease!
Coming home I understand the fear! You are terrified you’re going to do something wrong to accidentally cause your child harm, or worse. Give to much insulin, not enough insulin. There is a huge learning curve be patient with yourself everyone in your family feels flipped upside down!
Use the endocrinologist as much as you need in the beginning for questions. I can’t tell you how many times we were on the phone in the middle of the night. Sleep deprivation is part of it too… accept it and move on! You are your child’s first and best advocate they can live a wonderful life they just need a little bit more care! I now understand finger prick‘s diagnosis type one diabetes! I hope in my lifetime that finger prick‘s are part of preventative care this would save hospital trips,ER visits and spare a family the ultimate price of losing a child because they did not know you should know your child’s blood sugar level! Lastly be patient with your child if you feel overwhelmed and confused and sucker punched in your heart and stomach imagine how your child feels!
Cassie is 13 and we are stronger as a family! Just remember tomorrow is always a new fresh start! You can do this! You will! As crazy as it may seem to others I just feel like this is part of my daughters journey for whatever reason she has Type 1. It’s part of her and we have to take the good with the bad!
The last photo I hate.. it is important to share what undiagnosed Type one diabetes looks like obviously this is Cassie in intensive care! Thank you!
My facebook is Tara Gray and the group is private but it is "BeforeAware: BeforeDKA"