Wednesday, July 30, 2014

I worry about my son's TEDDY results

Since finding out my son’s increased risk for developing diabetes, there has always been the thought and worry that he may one day get the disease. Even now we are waiting on his most resent antibody results. I always hold my breath as I’m finding out his results. Will they still be negative?
I've thought maybe my increased anxiety stems from working in this field, surrounded every day by type 1 diabetes research and knowing that some children his age have antibodies or even diabetes. But knowing me, I’d still have some anxiety even if I didn't work for TEDDY. Are other families like me? Do they wait for that letter in the mail hoping that everything is still negative?
Plenty of adults have the high risk genes and never develop diabetes. I’m one of them, I found out years ago through participation as a control in an adult type 1 research study. I was very surprised that I have those genes and now I look at my childhood a little differently. I think how different my life could have been and how lucky I am that I didn't develop diabetes.  One day I hope a research study will be able to tell everyone what triggers type 1 and what people should avoid or do to prevent getting diabetes. This information may not be able to help our sons and daughters, but I’m holding out hope for their children.

Thursday, May 1, 2014

Guest post: My daughter’s diagnosis of type 1 through TEDDY

Just like all TEDDY kiddos, we were approached at the hospital right after Kyli was born. With my mom being a type 1 diabetic, I figured this was God knocking on our door telling us to do the study. About 2 months later, we received "the envelope."  In college, this is a great thing, but from a study, it meant they wanted Kyli in the study. From this point forward, I knew Kyli was going to develop diabetes...
At 33 months, Kyli was diagnosed with Diabetes in our TEDDY facility.
Her 33 month visit went like any other visit. Ask all the questions, take some blood, nose swipe. We started discussing a few things she would be able to do once she turned 3 years old.  I thought this appointment was going to be a piece of cake. Kyli did wonderfully, no fighting the blood draw.  We were going to be in and out.  I look back and I still think, I should never have been so comfortable. I knew something was up the moment Nurse Ruth (our favorite nurse) came into the playroom and told us Kyli's A1C was next in line and we would have to wait a few more minutes. I thought it was odd, but dismissed it. A few minutes later when she asked us to come back to our room, I got scared.  I grabbed Kyli and held her tight as they then told me her A1C was elevated to 7.4, not bad for a diabetic, but bad for a healthy child. As I wept silent tears, I listened as our life began a huge change.  They brought up an endocrinologist from the downstairs Barbara Davis Center clinic to talk with me and what all this meant. I was asked to watch her sugars closely for the next few days, let her eat what she wants and test her 2 hours later, and if she was high, to call them. 
I packed up Kyli after nurses made sure I was able to safely drive and I drove straight to my Mom's work, which was thankfully on the way home. I cried and we went to lunch at Jack in the Box. Kyli ate a handful of fries, about half of a cheeseburger, and drank some milk. I went home and waited the longest 2 hours of my life. I did everything to make that time go faster.  The two hour mark finally came through, she was napping… I went in tested her sugars, 440.  I then went to my room and cried, my 2 year old daughter was now diabetic.  I called the doctor then and asked, "What is too high?" He said 250.
We then made an appointment for us to come in the next day, Saturday, to do a quick injection overview to get us started. Kyli was diagnosed September 21, 2012. 
This last year has been a blur. We have adjusted to her having diabetes. Her early diagnosis was a blessing, we are still in our Honeymoon Phase, which means that her pancreas still works some. She requires very small doses of insulin, but nonetheless gets 4-8 shots a day depending on what she eats and when. We have become carb counting machines.  We were able to get a Dexcom G4 Continous Glucose Monitor in June, it is my new best friend.  Kyli will be getting her insulin pump in October, it will be a blessing.
Kyli has adjusted to all the changes very well. A month after her diagnosis, we did our first Diabetes walk with the ADA. We are doing that walk again this year in November. Go Team Tiny! 
What we missed before her diagnosis. It was the end of summer in Colorado, it is still hot then. All of Kyli's symptoms were accounted for. Kyli slept a lot, 10-12 hours a night and usually a 4hour nap- she was going through a growth spurt. Kyli was peeing more, we were potty training. Kyli was drinking more, it was during a super hot spell in Colorado and she played outside every day. She never lost weight. Now, when I look back, I remember thinking her sleeping so much was odd, but I dismissed it. We were lucky, if a few more weeks had gone by, Kyli could have gone DKA and we could have ended up in the hospital and Kyli is a coma.  Thankfully, TEDDY was there and in my eyes TEDDY saved Kyli's life.

Kyli with her family in 2013
 We will be doing a follow-up blog post with questions and answers for Kyli's parents. If you have questions you'd like us to ask please email include a note referring to this blog and your question.