The New Norm – Parents of Type 1 Juvenile Diabetes
You would think running to the bathroom every twenty minutes is a good thing when potty training a three-year-old. Unfortunately, this wasn’t the case for Emily Balish. After multiple trips to the bathroom in the middle of the night along with endless thirst, Anne Balish, Emily’s mother, had suspicions something else was going on.
“I went online to see what I could find,” said Anne. “What I found was shocking. Everything Emily was experiencing pointed to symptoms of juvenile diabetes.”
“I’m in the healthcare profession, but as her father, I didn’t want to believe my baby could have diabetes,” added Matt Balish, Emily’s father. “I searched online for other potential causes. Anything but Type 1 Diabetes.”
A pharmacist, Matt picked up a blood glucose meter and test strips at work one day and brought them home to test his young daughter.
“The reading came back at 478 and all I saw was a look of terror on my husband’s face,” said Anne.
A trip to the emergency room confirmed Emily was a Type 1 Diabetic. She was immediately transported to Johns Hopkins for further evaluation and care.
“At Johns Hopkins, we got a quick lesson on all the things that can go wrong with a child with juvenile diabetes,” said Matt. “And it didn’t end there. My wife and I went through a ‘Diabetes Boot Camp’ we had to pass before they would allow us to take our daughter home.”
They learned how to count carbs, dose and administer insulin, recognize symptoms of highs and lows and how to treat them, then were given an on-call number and told to follow up with their pediatrician right away. The Balishes were fortunate to recognize the signs and symptoms early and act fast. More than 40% of children end up passing out from ketoacidosis (high acid content in the blood caused by high blood sugar) and are actually diagnosed in the ICU.
Now 4 ½ years old, signs of a headache, crankiness, or a mood swing can mean Emily’s blood sugar has spiked too high or dipped too low. Sickness, stress and even exercise can cause adverse reactions. Most importantly, Matt and Anne must watch EVERYTHING Emily puts in her mouth.
“We have to give her insulin every time she eats a carbohydrate of any form. Our whole family, including our nine year old son, tries very hard to not eat in between meals in front of Emily. Holiday meals and family functions are scheduled around when Emily can eat. We even had to put a lock on the pantry because we found her sneaking food. Her little body was telling her she was hungry.”
Emily gets excited when she’s invited to a friend’s birthday party. Anne and Matt get anxious and apprehensive about the amount of carbs that will be readily available at the party in the form of chips, pretzels, sugary drinks, and of course, cake. They explain to Emily that she can have a piece of pizza OR a piece of cake, but not both. If Emily decides on the cake, mom and dad need to further investigate to find out where the cake is from so they can calculate the carb count to give her the appropriate amount of insulin.
“Every day is difficult in a new way. We are always trying to play catch up but can’t really expect consistency because there are too many variables. This becomes your new normal.”
One thing that IS known throughout each day is Emily’s blood sugar. With a Dexcom Glucose Monitor, a sensor allows for up to 220 blood glucose readings a day. The device connects with iPhones and the cloud so Emily’s parents, teachers and family friends have access to real-time data.
“You lose a lot of sleep. It’s like having a newborn all over again and can be a lonely journey as a parent. Our saving grace was the support we found at Apple Discount Drugs. John Motsko was a wonderful resource when Emily was first diagnosed. We felt helpless but even just talking to John made us feel better. We felt like we were making good decisions for our daughter because at the end of each day, we just want Emily to be as healthy and happy as possible.”
**When Matt and Anne couldn’t find local support groups for parents of children living with Type 1 Juvenile Diabetes they decided to launch an online group for families to share their stories and offer support to others on the same . Go to https://www.facebook.com/groups/LowerShoreDiabetesSupport/ for more information.