In Which I Kick Off Diabetes Awareness Month by Sharing Our Diagnosis Story

It's November 1st, and, even though it's still sort of like the day before Halloween here with the trick or treat schedule move, it's the first day of diabetes awareness month. In every post this month, I'll be sharing about type 1 diabetes and how it shapes our lives. I'll start today by sharing our diagnosis story. I've chosen to call it "our" diagnosis story as opposed to "Kittygirl's" diagnosis story because, while diabetes obviously has an effect on Kittygirl that it doesn't have on anyone else in our family since her body is the one dealing with it, a T1D diagnosis really affects the whole family when a child is diagnosed. The parents are normally the ones managing the condition and we can almost feel like we have diabetes ourselves. It affects siblings too in different ways, and I'll get into that later this month.

Type 1 diabetes, in case you're unaware, is an autoimmune disease in which the immune system attacks the insulin producing beta cells of the pancreas. Once about 80% of these cells have been killed (or maybe just made dormant, the jury is still out on that one) the symptoms of type 1 diabetes begin to manifest. Possible symptoms are below. If you or a loved one are experiencing or ever experience these symptoms, please see a doctor right away and ask to be tested for diabetes. It can happen at any age, from infancy all the way to your golden years.

Given the fact that type 1 diabetes develops over a period of months and possibly even up to a year or more, it's probable that Kittygirls immune system began attacking her pancreas sometime when she was five, possibly near the beginning of her kindergarten year in the fall of 2016. We had no idea it was happening at first, and were even pretty clueless when symptoms began to show up in early 2017.

The first obvious symptom for Kittygirl was frequent urination. In her case, it first showed up as frequent urination at night. This was a kid who never peed at night. Even when she was an infant, she kept her diaper dry at night. Nighttime potty training was no feat at all. She just did it. Quite suddenly, shortly after Christmas, she started getting up to use the bathroom at least once after going to bed. We made her stay on the toilet extra time at bedtime. We reduced liquids at dinner. It just kept getting worse.

At this point I actually mentioned to Mr. Engineer that frequent urination was a symptom of diabetes and I was a bit concerned. He assured me (in vain, as it turned out) that there was no way Kittygirl had diabetes and I was just being a worry wart, which is pretty common for me. I start googling the symptoms of a brain tumor when I have headache. I put it out of my mind for a time.

Somehow we never noticed it, but Kittygirl was also slowly losing weight. All told she lost 4 pounds, which, when you only started out weighing 45, is a big deal. We might have gone much longer blowing off her symptoms if my mom hadn't come to visit for Presidents Day weekend in February. She asked us if Kittygirl had lost weight and commented on how thin she looked compared to when she last saw her at Christmas.

She watched her use the bathroom a lot and drink copious amounts of soda when we went out to dinner, and Saturday evening she told us she really thought we should have take her to the doctor soon. She had a well check coming up in a couple of weeks and I had intended to bring up our concerns then, but my mom pressed me to make an appointment sooner rather than later. I resolved to call the doctor on Monday. Then over night between Saturday and Sunday Kittygirl got up to use the bathroom five times. We could no longer deny it. There was obviously something wrong.

I decided to take Kittygirl into the walk in clinic at our doctor's office first thing Sunday morning. My mom came with us. Mr. Engineer and Squirrelboy went on the church, and we were still hoping we'd find something other than diabetes was to blame (maybe a UTI, or chronic constipation, which actually caused frequent urination for Squirrelboy at the same age) and be able to join them in time for the 11am service.

I was in such denial that, when we checked in, I gave a suspected UTI as the reason for the visit even though I already knew in my  heart that the most likely cause of Kittygirl's symptoms was type 1 diabetes. While we were waiting to be seen by the physician's assistant on duty Kittygirl munched on goldfish. Before we went back, we were asked to get a urine sample, which the PA looked at before seeing us.

When she entered the room, I could tell by the look on her face that the urine sample did not show evidence of a simple UTI. She told me Kittygirl's urine was full of sugar and that she had to test her blood sugar. Kittygirl received the first of countless finger pokes to test blood sugar. The meter just read HI, which meant her blood sugar was over 600. The PA told us she couldn't give an official diagnosis based on blood sugar alone, but that Kittygirl almost certainly had type 1 diabetes and we should head for Kentucky Children's Hospital (thankfully only 20 minutes away) as soon as possible and not let Kittygirl eat anything else or drink anything other than water. For reasons I don't fully understand, the office was unable to let the hospital know we were coming or transfer any files, but they did give us a copy of her file including the results from the urine and blood sugar tests.

We called Mr. Engineer to let him know what was happening and left for the hospital. When I gave the reason for our visit upon arriving we were ushered to a room within 10 minutes. The nurse came in to insert an IV for fluids and take more blood for testing. She said they would probable set up an insulin drip soon to begin getting Kittygirl's blood sugar under control.

An hour later, she came back to report that, while Kittygirl's blood ketones were high, her blood was not acidic and she was not in DKA. Instead of an insulin drip, she received a shot of Lantus, a long acting "basal" insulin that all T1Ds take once a day unless they are wearing a pump that gives them fast acting insulin continuously at a "basal rate." Kittygirl was a champ through all of this.

The pediatrician on call then came in to discuss the results of her blood tests. He said that all the data pointed to type 1 diabetes, but he couldn't officially say it was type 1 or some other rare type until the tests for T1D antibodies came back (spoiler alert, it was positive for all the antibodies they tested for). Either way, she would need to start taking insulin.

That pediatrician was the shining star in our diagnosis story, and I wish I had remembered his name so I could thank him publicly. He assured us that Kittygirl could go on to live a normal life, just with extra steps added in. He said that sports, sleepovers, pizza, cake at birthday parties, etc, would all still be possible. He told us that his teenage daughter's boyfriend was a type 1 diabetic and a cross country runner and living a normal teenage life.

We were checked into the emergency room around 12pm, and weren't moved to a room in the children's hospital until almost 8pm. Kittygirl was starving. She hadn't been allowed to eat anything since around 11am. The nurse on duty came in and told us Kittygirl could have dinner, but first we needed to learn how to count carbs so that we could figure our her insulin dose for the meal.

The nurse gave us a book of carb counts for common foods and the nurse helped us look up the foods that were in Kittygirl's dinner: chicken fingers and french fries. They told us that at this point she should get the insulin shortly after eating and had us count the number of fries she ate as part of calculating how much insulin she needed. The nurse also tested her blood sugar before she started eating. It was still high, but going down.

Using a standard formula for a child her age, the nurse had us calculate Kittygirl's insulin dosed based on her pre-meal blood sugar and the number of carbohydrates she ate. The nurse gave the shot that time, but told us we would have to start giving them the next day.

I spent the night at the hospital with Kittygirl, and I was in charge (with the nurse's supervision) of calculating Kittygirl's breakfast insulin and giving her a shot of insulin. By midmorning it was determined that Kittygirl was no longer dehydrated. Her IV was disconnected and she was allowed to move around the hospital. She really enjoyed the playroom.

That day was filled with a visit from the on call endocrinologist and sessions with a diabetes educator. We were given a huge binder including carb counts and information about type 1 diabetes. At the end of the afternoon we were given a written test. Spoiler alert: we passed with flying colors. We'd both calculated carbs and given at least one insulin shot and we were told Kittygirl could stay longer if we felt uncomfortable, but that medically there was nothing she needed that we couldn't do at home and they were happy to release her.

We chose to go home. It took a few hours to get Kittygirl's prescriptions sent up and all the paperwork filled out. Kittygirl ended up eating dinner at the hospital and we weren't released until just after 8pm. We gave her her first shot of basal insulin from the insulin pen prescribed to us.

We then went home to begin our new life.