Ellie's T1D Diagnosis Story
Ellie Rae is my second of three babies. Born into this world at record speed on June 8, 2002 and has been smiling and giggling ever since. She was my 'good' baby who nursed like a champ, slept like a dream and was happy and content as long as there was something or someone to look at. Ellie desires to be just like her big sister, Maddi, and is a best friend (and worst enemy) of her little brother, Ben. My flower child, free spirit, book loving, silly little girl.
So, when her personality started to change and her trademark smiles became random I did what most Mom's would do ....... chalked it up to 8yo growth and hormone changes. Besides, she was eating like every meal was her last and not gaining an ounce. Surely a growth spurt was on the horizon. When school started this last August and Ellie started coming home in tears, I fed her a snack and gave her some space to just chill-out. After all, 3rd grade is a challenge and Ellie likes to succeed and please her teachers! She just needed to stare at the TV, have a snack and regroup.
Over the last 2 years it had become apparent Ellie had some hypoglycemia (low blood sugar) issues, but her Dr. assured us all would be fine as long as we fed her every couple of hours. When the 'grouchies' would hit, I would check the clock and sure enough it was near a meal or snack time. Ellie would eat and then return to her normal, happy self. Until late September 2010.
More often than not, Ellie would not bounce back from her 'bad' moods after eating a snack or resting or having quiet time. Her appetite was as big as ever, but she would complain of an upset stomach midway through a meal. Ellie always had room for milk or juice or water, though! In fact, towards the end of the month she started carrying something to drink with her at all times and would also wake in the night to grab another sip of water.
Ellie's strange behavior really grabbed my attention when we took a quick road trip over a Saturday and Sunday in late September 2010. We have made this particular trip often, and had gotten it down to a science where we drive to our destination in 2.25 hours with NO bathroom stops. Well, this weekend we had to stop. Not once, but 3 times along the way. I grabbed her cup of water and told her "No more!". Her face crumpled up and she whined "but I am soooooo thirsty". Throughout the next 24 hours I watched my daughter drink like a parched camel in the desert. Once glass in hand and always looking for another. As Sunday rolled around, we packed up and loaded the car for the return trip. I told Ellie to put the drinks away because I didn't want to have to make any stops on the way home. I will never forget what I witnessed next: Ellie got this frantic look on her face and started gulping the drink and grabbed the refrigerator handle to get another refill and then started to cry. My 'mom radar' was going off big time. I knew what these symptoms could mean.
During the drive home (with 2 bathroom stops with 1 accident later) I knew something was wrong, but what could I do? Get home on a Sunday and go to the Urgent Care and tell them my daughter was drinking and peeing too much? Pppppffffttt. I am a seasoned mother, now. My kids are no longer babies so I don't run and call the Dr. about every little cough or sneeze or sniffle! This is no biggie. I'll just keep an eye on her and take her to the Dr. later in the week if it gets worse. Except ........ my heart was heavy with worry. I decided to text my friend, Stef, whose daughter was diagnosed with Type 1 diabetes a couple of years ago. "Just ask her a couple of questions about early symptoms so I could ease my worries and get on with other things. If she doesn't text back, I won't get all anxious" I told myself.
She didn't text back. You know why? She is a D-mom. Her warning bells were ringing loudly so she picked up the phone and called me. "What's going on? Tell me everything you are noticing." So I did. Then I laughed and apologized for taking time out of her day to calm my nervous nellies. Except she didn't hang up. In fact, she told me to take Ellie to Urgent Care. I argued I didn't want to wait in a germy office on a beautiful Sunday afternoon and assured Stef I would call the Dr. tomorrow and make an appointment. Apparently this wasn't a sufficient answer, because Stef URGED me to go to Walgreen's and buy some keytone strips. As in, right now. "If Ellie is negative for keytones, you can wait until tomorrow to see your doctor. If she is positive, you are going to the Urgent Care". Uh, okay. But what the heck is a keytone? Never mind.
Ellie and I get to Walgreen's and were barely at the register to pay for them when Ellie tells me she has to pee really bad. We head back to the store restroom (ewwww) and she pees on a test strip. Again, a moment in history I will never forget: the test strip was purple. I called Stef and said, "she's positive". At that moment, I knew my daughter had type 1 diabetes. I just knew it in my heart.
What happened next is all sort of blurry and messed up. My mind and body went on auto pilot while my spirit sank. I rushed home and quickly explained to my husband why I had Ellie pee on some weird strip and that I spoke to Stef and now we needed to go to Urgent Care. The P.A. at the clinic said Ellie was "spilling" sugars into her urine. Something about 1000 units. ?What? Then a blood draw and mumbling about being over the meter and another machine not able to read that high. ?How?
At this point I am texting Stef back and forth with numbers and questions and she is trying to explain and then all of the sudden the P.A. walks back in with the Dr. on call and they sit us down and tell us we need to take Ellie to the hospital. ?Where?
This is where my very-good-never-can-repay friend steps in and tells me she is coming over to drive us to the hospital. ?Okay?
Blur - insert IV - blur - people talking - blur - Stef answering - blur - Ellie holding strong - Blur - stable so we can take her home - blur - show up at the pediatric endocrinologist ?Who? at 8am in the morning. - blur.
We somehow make it through the night and show up at the clinic the next morning. We sign in and are ushered through paperwork, vitals and shown to a room. A nice nurse starts comes in with an armload of papers and equipment and immediately starts to talk to Elie about checking blood sugars. A knock on the door interrupts the instruction and in walks the doctor. A brief introduction is made and then, for the 3rd time in 24 hours, I experience a moment that will stay with me forever: The Dr. turns to look at Ellie, rolls her chair right up so she can look at Ellie at eye level, and tells her. "Ellie, you have Type 1 Diabetes. There is not a cure, but we are going to teach you today how to manage it. You will take insulin everyday. You didn't do anything to cause this. It is not your fault. You can do anything and be anything you want to be. Don't let anyone tell you different."
I am sharing this story in hopes it will cause another person or parent to call their Dr. or investigate further about any symptoms they or their child may have of Type 1 Diabetes. Ellie did not have to stay in the hospital and did not suffer from DKA because we caught it early. Because Stef shared her story with me 2 years ago and I remembered about the excessive thirst. Because, if left untreated, diabetes can be fatal. Listen to that inner voice when it tells you something is just not right.
Symptoms of Type 1 Diabetes