Diagnosing Emily

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”.

2 year old em


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.

emily big

For anybody who doesn’t know the symptoms of diabetes here are the most common:

Extreme thirst
Frequent urination
Increase in appetite
Weight loss despite increase in appetite
Extreme fatigue

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.

 

Comments

  1. says

    Oh my goodness! What a scary situation! My neighbor just recently went through the same thing with her son! He was 2 years old and they discovered he had type 1 diabetes. I’m so glad you figured out what was happening before it was too late.

  2. says

    Diabetes runs in our family and it is scary. Thanks for sharing this information for others to know the facts. I am glad they found the cause and Emily is thriving now.

  3. says

    WOW… what a story and I’m sooo soo glad about the happy ending; your daughter is beautiful.. I totally can relate.. we are struggling with Dr.s as well.. My daughter has RA, I self diagnosed it for months, she is 5 and I knew the symptoms and issues from myself; we went to the Dr. last time she had a breakout and he just said No, all is normal; I also demanded bloodwork and low and behold her levels are elevated and she did have a JRA attack… Love my Dr., BUT us Mom’s know if there is more then just a sore throat…. Good for you for keeping on it and she is a blessing.. soo precious

  4. says

    Wow, I am so glad everything turned out the way it did. I do wish she was diagnosed sooner so that you didn’t have to go through any of that…. GOD bless you all for living through it and being strong!

  5. says

    I know how scary it can be to rush a sick child to the ER and not know if they are going to make it through the night. I also know what it is like for all of this to be the fault of an irresponsible doctor. Good for your for making your ordeal public in order to educate. Your daughter is beautiful with a very much super mom.

  6. Heather says

    How horribly horribly scary. So glad she was able to recover with no long lasting problems and be the beautiful teenager she is now.

  7. says

    I am so sorry that you had to go through something like that. I just can’t imagine how you must have felt. I am happy that your daughter is fine now. Diabetes is a horrible illness, but I am so glad she can control it and live a normal life.

  8. says

    So glad that she finally got the help she needed. We had a similar experience with our oldest daughter.

    My oldest daughter had many of the symptoms (extreme thirst, urination, bedwetting at age 10/11, weight loss) for years and our doctor didn’t have a clue. (Nor did I but I did bring them up because they were strange to me.)

    Eventually I had a friend who’s little boy was diagnosed and she noticed the symptoms and test my daughter’s BG. She blew the meter, twice. My friend also tested her ketones twice, 2.8. So I called our doctor and gave them all of the info, along with the symptoms we had noticed. At this point I flat out told them I suspected (knew really) that it was diabetes, fully expecting that they’d get her in immediately or tell us to go to the ER. No. They offered us an appointment for the following week. What?

    Needless to say we took her to the ER and she was admitted to the PICU and dx’d. Her BG was over 1000 and her A1C that day was 17. The other doctor is history. And I was not nice about it either.

    God certainly kept our Mackenzie alive for a long time before her dx. Now that we know the symptoms we can see she had it for well over a year. Endo says she was a rare case who developed slowly like a smoldering fire. We are so thankful that He took care of her for so long while we took forever to figure out what was going on.

    • says

      Stefanie,

      I’m so sorry to hear that you had an awful experience as well!! It baffles me that this isn’t the first thing that doctors check for with those symptoms. It’s so easy to check their blood with a glucometer in the office. It scares me to think how many times this has happened to a poor family. I’m sorry for all you went through, but so glad that she is well now :)

  9. says

    OK now you have me concerned my 14 mos old daughter has all these symptoms all the way I told the doc and I got the blow off now I don’t know if I should take her to the ER.. she takes 3 naps a day for 2 hours each and sleeps all night is constantly hungry and thirsty and I put a diaper on her and its soaked thru her clothes with in 15 – 20 mins we go thru 2 box of size 4 diapers (each box is 82 diapers) a week.. I know this is not normal but I don’t know how to get the doc to listen to me..

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