Claire's Courage
Claire's Diagnosis Story

Originally published on Triad Moms on Main blog, April, 2010 - written by Amy Takacs

“Just pee in the cup and we’ll go get ice cream as soon as we leave here,” I find myself negotiating with my five-year-old daughter Claire refusing to provide a specimen at the pediatrician’s office. “This won’t take long, we just need to see if you have an infection.” She finally cooperated, through her tears. She was a bit out of sorts, not her usual bubbly, cooperative self.

Earlier that morning, Claire’s kindergarten teacher told me that Claire wasn’t herself the day before. She didn’t seem to feel well, plus she kept interrupting the class to go to the bathroom. I thought, “she must have a urinary tract infection” as I had also noticed her bottom was red during bath time the night before. I made the appointment with the pediatrician for that afternoon, the sooner we could get her on antibiotics for the UTI the better, so I thought. As soon as we arrived at the doctor’s office, Claire said, “Mommy, I have to go potty!” I said, “Didn’t you just go before we left school?” Realizing she couldn’t wait until we were called back, the receptionist handed us a cup before entering the restroom.

Claire and her 8-year-old sister Natalie are reading a book in the exam room as the doctor returns. “We didn’t see any infection in the urine sample, but we did find sugar in her urine. “We’ll have to take a blood sample,” the pediatrician said. (Oh great, how am I going to break this next procedure to Claire as she’s waiting to go get ice cream?) As the doctor goes to fetch the nurse, Claire and Natalie are getting restless in the small room, acting silly, being loud, just being kids. They don’t notice the fear and concern creeping up in me. After the unpleasant finger prick, drying Claire’s eyes, promising that it’s almost over... the doctor comes back in. I hear just a few words as my head is swirling... “Blood sugar over 450. Type 1 Diabetes. Hospital. NOW.”

The drive from Ford Simpson Lively & Rice’s office to the emergency room at Brenner Children’s Hospital seemed like I was walking the Green Mile. I know as a Mom I am supposed to stay strong for my kids, but I couldn’t keep it together. I was crying, almost inconsolably. Trying to talk through my tears as I spoke to the secretary at my husband Warren’s office, asking her to please get him out of his work meeting. I had to talk to him right away. As Claire sits frightened in the back seat she quietly asks, “Mommy, am I going to go see Grandma?” Through my tears I confidently tell her, “NO. Grandma is in heaven. You are going to be OK sweetie,” as I silently wept more, wishing my own Mother was still around to help see me through this crisis.

As we’re waiting in the emergency room, I call my friend and local Winston-Salem blogger Lucy, my first friend in town since moving to Winston-Salem a just few months prior. She’s the most knowledgeable person I know of all things Winston-Salem... especially Brenner. (http://lifeinforsyth.blogspot.com/2009/04/please.html) Now that Lucy knows about Claire, the news travels fast. Still waiting in triage for the doctor, consoling scared, sweet Claire, my cell phone starts ringing with well wishers... a Mom from the elementary school whose 3rd grade son was diagnosed with Type 1 when he was in kindergarten, my good friend from Roanoke, VA (how did you hear so quickly?), in between texts to and from my sister as she watches her daughter’s softball game in Raleigh... “I’m scared. I can’t do this.” I write. “Yes, you can. We will help you.” She types back...

Fast forward one year. It still seems like yesterday, yet it feels like we’ve been living with this disease for years. Tomorrow is our “Diaversary,” a term coined by Type 1 parents designating their child’s diagnosis day. It comes with mixed feelings - sad that our Type 1 kids have lost their innocent childhood by enduring this grueling disease, and happy beyond belief that with insulin therapy, we can keep our Type 1 kids alive. I’ve learned all the lingo from other Type 1 parents, and our family has settled in to our new normal... daily pricks and multiple insulin shots. In November, Claire went on the insulin pump, which still requires the multiple daily finger pricks, but instead of shots she gets a needle every 2 - 3 days for the cannula insertion which continuously delivers her insulin.

We have to weigh and measure everything Claire eats, and count the carbohydrates for every piece of food that enters her mouth. She can eat cake and candy, contrary to what folks may believe, but we must administer insulin via her insulin pump to counteract the carbohydrates she consumes. See, her body does not make insulin at all. Type 1 diabetes (also known as Juvenile Diabetes) is an autoimmune disease where the immune system accidentally kills all of the insulin-producing (islet) cells in the pancreas. Insulin is necessary to convert sugars into energy the body needs to function. Too much sugar leads to hyperglycemia (high blood sugar) which over time can lead to blindness, leg amputations, kidney failure, heart disease and even death. Too much insulin leads to hypoglycemia (low blood sugar) which can cause seizures or fainting. Blood sugar is affected not only by the carbohydrates she eats, but also by stress, exercise, sickness and hormones. (I hear it gets REAL interesting during puberty!) It’s a numbers game, and we are constantly waiting to see how her body is going to react. Normal blood sugar readings for people without diabetes is 80 - 120. Claire’s has been known to fall as low as 35, and climb as high as 525.

The exact cause of Type 1 Diabetes is unknown. Scientists have come up with a number of explanations and possible triggers of this reaction, including:

• infection with a specific virus or bacteria;
• exposure to food-borne chemical toxins; and
• exposure as a very young infant to cow's milk, where an as yet unidentified component of this triggers the autoimmune reaction in the body.

Eating sweets or the wrong kind of food does not cause diabetes. However, it may cause obesity and this is associated with people developing Type 2 Diabetes.

Type 1 Diabetes takes only a few weeks to develop. The initial symptoms are:
• increased production of urine (because the body tries to get rid of the excess sugar in the urine, diluting it with water),
• excessive thirst,
• fatigue (because the sugar is not being converted into energy),
• loss of weight,
• increased appetite,
• feeling sick,
• blurred vision,
• infections such as thrush or irritation of the genitals.

During our two night stay at Brenner Children’s Hospital, we were often told by doctors and nurses that Claire would not go to college with this disease - they truly feel a cure is on the way. While she cannot outgrow Type 1 Diabetes, researchers are hard at work to find a cure. We’ve become involved with the Juvenile Diabetes Research Foundation, the largest charitable funder and advocate of type 1 research. The mission of JDRF is to find a cure for diabetes and its complications through the support of research.

Claire turns “Lucky 7” at the end of this month. I don’t know when she will be free of her regimen of finger pricks and the attachment of her insulin pump, but here’s what I DO know:
• This disease is treatable, and Warren and I have a healthy child thanks to the discovery of insulin in the 1920s.
• We are lucky to live in the Triad, with access to exceptional care at Brenner Children’s Hospital.
• We have a strong, courageous kid, and she amazes us every day with her unwavering strength.
• We CAN do this, and one day, Claire will tell people “I USED to have diabetes.”

Learn more about Claire’s Type 1 Diabetes at www.clairescourage.com.

 
Claire's Courage