The Back Story My father was diagnosed with type 1 diabetes in 1955 at the age of 12. He was very sick at diagnosis and spent 3 weeks in the hospital, he lost about 30% of his body weight. Shortly after diagnosis, my father was told he would not live to see 21. He was afraid to buy a nice pair of shoes because he didn't want to "waste them". Because I was raised by a person with type 1, my parents were always very watchful for symptoms in me, since they knew diabetes could have been passed on. They always watched for symptoms of thirst, excessive urination, etc. I never presented with these symptoms but picked up on them right away when my daughter did in the summer of 2002.
Six months before diagnosis, when Samantha was three years old, I noticed she was drinking and peeing more and she had more accidents (this was after being successfully potty trained). I actually had her tested for diabetes at the pediatrician's office because she was having so many accidents and I thought maybe she was developing diabetes (they wrote it off to difficulties with potty training, her urine was negative for glucose and ketones). I am convinced these were actually early symptoms of diabetes as her beta cell function was starting to decline.
The DealFast forward to June of 2002, just 2 weeks after Samantha's fourth birthday. Samantha is now peeing constantly, having accidents at school daily (sometimes multiple times), drinking constantly and of course, I'm following the pediatrician's advice of withholding water after 7 pm to avoid night time accidents. In an effort to get her refocused on using the bathroom as soon as she felt the urge to go, I made a deal with her that if she could go a whole week without an accident at school I would buy her a Barbie Dream House, something she really wanted. But day after day she continued to have accidents and would get very upset about them because she felt that she couldn't control it. And water ... the poor kid needed water so badly that one night she threw herself down on the floor and pitched a fit
for water! This was a child who had never before in her entire life pitched a fit over anything. It was during this "fit" that it occurred to me that this time it had to be diabetes.
Sticky PeeI called my dad (who at the age of 59 was miraculously still alive) and asked him for his advice. After asking many questions about her symptoms, he told me, "there's no way she has diabetes, she'd be a lot sicker than she is." Of course he was thinking back to when he was diagnosed 47 years earlier. But, he said that he would let us use his meter to test her blood sugar when he returned home the following day (he was away on a trip at this time). That night I let her sleep in bed with me and gave her as much water as she wanted. I dreamed all night about her having diabetes, I just knew in my gut that she had diabetes. It was a very helpless feeling because I was convinced something was wrong with her, and I was convinced that I knew what was wrong. But I was doubting myself because the person in my life who knew the most about diabetes didn't think I was right. I was so worried that something bad was going to happen to her before she could be diagnosed. In the middle of the night that night she woke up to pee and had to dash to make it to the potty just 15 feet away from the bed. She didn't quite make it in time and peed a little bit on the bathroom floor. We were both so tired, so I threw a towel over the pee and decided to clean it up in the morning.The next morning we woke up and I went to clean the floor and the towel was literally stuck to the floor, like it had been glued down. I finally got the towel up and it was like someone had spilled soda on the floor, it was tacky and sticky, like there was a lot of sugar in her urine. At this point I was convinced I was right about the diabetes, regardless of what my dad thought.
The Very Friendly MeterThat afternoon at around 5 pm, my dad returned from his trip and Samantha and I met him at his house to use his meter. The first test said "HI". Hmmmm. Hi? Really? These things greet you? We had no clue what this meant because my dad had never seen a reading like this before. So we tested again. Again the result was "HI". Three tests later, we still had nothing but "HI", what a friendly meter! My dad figured the meter was broken. He tested himself and it worked fine; tested me, no problems; tested my mom, totally fine. So, we deduced that "HI" meant her blood glucose was too high for the meter to read (I later looked it up on the web and found we were right). At this point my dad finally agreed with me. He was forced to accept that his granddaughter, whom he loves more than just about anything in this world, had the same disease that he had lived with for most of his life. I called my ex-husband, Samantha's father, and told him we'd have to meet at the peditrician's sometime the following morning and that I was certain Sam had diabetes. That night I took my dad's meter home and tested Samantha throughout the night. I'm not sure what I thought it would achieve, since we weren't getting actual readings, but it still made me feel better.
Dr. DanThe following morning, June 4, 2002, I called the pediatrician's office to schedule an appointment. The woman who answered the phone told me they were booked and I'd have to wait 2 days to be seen. I told her what was going on, that my daughter most likely had diabetes and that she had glucose levels too high to register on a meter. She told me they still could not see Samantha that day and I'd have to wait. I told her, in admittedly not the nicest tone, to put me on hold, go find a doctor or nurse and tell them about my daughter's blood glucose readings and then come back and tell me if they still were going to ask us to wait to be seen. After holding for about 3 minutes, she returned and what do ya know, they were suddenly able to see us at 10 am that very same day! They had to squeeze us in with a different pediatrician than the one we normally see, but we were seeing someone and that's all I cared about. As it turns out the doctor she saw, Dr. Dan, has 4 children of his own and three of them have type 1. He was an amazingly sympathetic person and so great with Samantha. I explained her symptoms, the family history, and the blood glucose readings and he said, "Well, I can pretty much guaranty that she has diabetes, but let's do a couple of tests to make sure." They checked her urine and then next thing I knew he was telling us we had to be at the Barbara Davis Center at noon.
The Barbara Davis CenterWe are very fortunate to live in a state that is home to one of the best diabetes clinics in the nation. I actually participated in research studies at the Barbara Davis Center when I was a young child. Now I found myself as an adult making the familiar trip downtown so that my daughter could begin her new life with diabetes. On our way we stopped at Burger King for lunch, the kid was starved and admittedly so were we. My parents joined us for the appointment at the Barbara Davis Center and within the hour I was giving Samantha her very first shot of Novolog. There was no way someone else was going to give her that shot. I was scared to death to put that needle in my child, but she was more scared and I was not going to let her go through it alone. She survived that first shot and all the subsequent shots that followed over the years. Her HbA1c at diagnosis was 8.5, which is actually pretty good for someone newly diagnosed. I have no idea what her actual glucose level was, I guess I should ask the endocrinologist about that one day, but her ketones were large.
The Barbie Dream HouseWe were fortunate. We caught it very, very early. Samantha had only lost about 10% of her body weight. Of course I felt awful after all of this because I had been withholding water from my kid, which she really needed to help flush the sugar and ketones. Needless to say, the first day after our Barbara Davis Center training was over, I bought her that Barbie Dream House that I had previously promised if she stopped having accidents . At this point it was obvious that her accidents were beyond her control and were a symptom of a much larger problem and they all but disappeared once she started on insulin. I am so glad I knew what to look for and that I insisted she be seen immediately by the pediatrician. I have heard so many diagnosis stories from other parents of children with diabetes and in most cases these kids have ended up on death's door, in intensive care, fighting to stay alive. That could have just as easily been Samantha had I not known what to look for. If I can recognize the symptoms and put 2 and 2 together, why can't more pediatricians? With the prevalence of type 1 diabetes being what it is in America today (41 new children diagnosed every day), why is it that pediatricians either don't know the symptoms or don't take them more seriously? This I will never understand.
