Since today is World Diabetes Day, I thought it was appropriate to share the story of how Emily was diagnosed. First off let me say that our story is very atypical of a diabetes diagnosis, most doctors, when presented with the symptoms, will be quick to order the appropriate tests and a diagnosis is made quickly. Sadly that was not the case with Emily and we almost lost her at 2 years old because of a severe delay in diagnosis.
It was May of 2001, Emily was just about to turn 2 and wasn’t acting right. I couldn’t put my finger on it, but my sweet girl just wasn’t the same and my spidey senses were tingling, there was something wrong. I took her to the doctor and was told she was completely fine, just probably starting “the terrible twos”.
Weeks later I noticed that she was drinking a large quantity of water daily, I mean a lot, close to a gallon a day for 3 days, for a two year old. Not normal at all. She was also wetting through every diaper I put on her, I would put a diaper on her and 10 minutes later it would be soaked. So again we took a trip to the doctor, this time his stellar diagnosis was “It’s getting hot outside, that would naturally increase thirst” his response to the increase in urination? “what goes in must come out” Seriously? This was my first child and I wasn’t a doctor but I knew the amount of water she was drinking and the amount of pee that she was producing was not normal. I told him that I was still concerned, he rolled his eyes and agreed to do more testing, he was obviously put out about having to order tests and just ordered the bare minimum and didn’t include a blood test, just a bladder ultrasound and an xray.
We did the testing and surprise, surprise it all came back normal (you can’t diagnose diabetes with an ultrasound or xray or any other imaging test). We were told again that she was perfectly fine. 4 days later, I had had enough of the now gallon and half of water consumption and the full diapers every 10 minutes and marched back into the doctors office and demanded answers. This time my doctor reluctantly agreed to a blood test and basically called me crazy, even though she clearly did not look well at this point and had lost weight (2 lbs) from the last time he saw her.
We went for the blood test the next day on June 4th, a Friday. We went in the morning since it had to be a fasting test. We received the results on Friday afternoon, “Hello, Mrs. Coffin, this is Dr. Johnson. We got Emily’s blood test results back and her fasting blood sugar was 280 (normal fasting blood sugar is less than 100). We think she has diabetes (Insert big fat DUH! here) don’t give her any sugar and we will see you in the office on Monday morning at 9” Meanwhile my mind is reeling, what did he just say? What did that mean? What the heck was going on? I managed to ask if we should go to the ER and he told me that this wasn’t an emergency and only go to the ER if she became unresponsive….ummmmm seriously?
Turns out this in fact was an emergency, a very serious emergency. The only reason she didn’t die that weekend was because God was looking out for her. She was in such bad shape she shouldn’t have made it through the night, let alone the weekend, she was so, so sick. By Monday morning, she was done, she threw up and passed out. I rushed her to the ER (20 minutes from my house) She kept going in and out of consciousness. It was a surreal experience, I keep flashing back to it and plays like an episode of ER. I didn’t bother to park, just pulled in to the ambulance bay, pulled my half conscious baby out of the car and rushed into the ER screaming “MY BABY, MY BABY! SOMEBODY HELP MY BABY!!” They immediately rushed her back and I told them that was just diagnosed with diabetes on Friday. I will never forget the look the doctor gave me after seeing that her blood sugar was over 800 (normal is 80-120). It was a look of total disgust. I didn’t understand that look until years later when I learned that the proper protocol for a diabetes diagnosis was immediate hospitalization. This doctor thought that I had delayed treatment on purpose, or that I just didn’t care. It never occurred to him that a fellow doctor would have told us to stay home through the weekend while our daughter got closer and closer to death.
They were able to stabilize her after about 30 minutes and she was admitted to the PICU where we stayed for 5 days. She was then moved to the regular pediatric ward where we stayed for another 7 days. We spent those 7 days getting a crash course in nutrition, blood sugar and insulin injections. Finally they felt she was well enough and we were educated enough to take care of her.
The happy ending here (there is one, I promise) is that not only did she survive her diagnosis, she is now a thriving teenager that doesn’t let diabetes stand in her way. We still have scary moments here and there, but she is under the care of an amazing practice and I worry a lot less now.
For anybody who doesn’t know the symptoms of diabetes here are the most common:
Increase in appetite
Weight loss despite increase in appetite
If your child shows any of these symptoms, do not hesitate to take them to the doctor. The earlier it’s caught the better. Most doctors are very on top of noticing the symptoms of diabetes, ours, unfortunately was not.