November is Diabetes Awareness Month, and World Diabetes Day is recognized Nov. 14, to raise awareness about Type 1 and Type 2 diabetes. According to www.beyondtype1.org, Type 1 is a chronic autoimmune condition that occurs when the body’s immune system attacks and destroys the insulin-producing beta cells of the pancreas. The pancreas is left with little or no ability to produce insulin, a hormone that regulates blood sugar. Sugar that stays in the blood can damage organ systems, which is why Type 1 diabetics have to pump or inject insulin daily.
Type 1 diabetes can be diagnosed at any age and requires planning to avoid high and low blood sugars. Type 1 is not a lifestyle disease or something you can outgrow. It is not preventable and currently there is no cure.
To help raise awareness and encourage others with diabetes, we asked a few of our readers to share stories of their
Type 1 Warriors.
Beau, age 6
‘My pancreas may have quit, but I did not.’
In June, 2018, my three boys and I drove to Greenville, South Carolina, to visit my husband, and their dad, Tim, while he was on a business trip. Beau, my middle child, and I had been having stomach cramps for a day or two. We didn’t have fevers or other symptoms, so I decided that a doctor’s visit was not warranted.
Once at the hotel, the boys were excited to go swimming, but Beau suddenly felt bad again, and lay down in a lawn chair. This was uncharacteristic of my active and adventurous 5-year-old, but I also had stomach cramps, and assumed we had a mild virus that would pass.
The next morning, everyone seemed to be feeling great. We kissed Tim goodbye, and the boys and I left for the Greenville City Zoo. We spent four hours walking around, seeing the exhibits, and then decided to cool off with a popsicle. It was so hot and muggy that day. All three of the boys looked wilted, and Beau was feeling sick at his stomach again. I took his temperature, which was normal, and noticed an unfamiliar smell about him. We took a quick break and decided to beat Atlanta traffic by driving home early.
When leaving the zoo, my youngest son, Finn, stopped at a monkey exhibit that had a tropical waterfall. Beau tugged at my shirt and told me he had wet his pants. My only thought was confusion, because Beau was potty trained at 20 months old. I immediately googled Beau’s symptoms: unexplained urination, pale, fatigued, stomach cramps, odd smell. Shockingly, the suggested diagnoses were Type 1 diabetes or appendicitis. I had Beau jump up and down, which was the suggested test for appendicitis. No pain equaled no appendicitis. Beau didn’t have any pain when he jumped. Given the two possibilities, I had been praying for appendicitis.
I started to panic. I went through the long list of complications I had considered while pregnant with the boys, and Type 1 diabetes had not been one. Looking back, maybe I should have considered it. My maternal grandmother, born in 1929, had Type 1 diabetes. As I stood in the zoo, formulating my plan of action, I had a flashback of giving her an insulin shot in her stomach when I was a young child. I also thought about the times she asked me to bring her something sweet when she was having low blood sugar. I didn’t know the specifics of Type 1, but I knew it was a serious condition that led to my grandmother’s death, at the young age of 61. In my mind, there was no way that, after three generations, Type 1 was resurfacing in my child. Taking a deep breath, I realized this was only an online diagnosis. I rushed the boys to the car and started searching for the nearest Children’s Healthcare of Atlanta (CHOA) urgent care along the route home.
Life changed after the zoo. Within three hours of leaving, Beau was emergency transported by ambulance from a CHOA urgent care to CHOA Egleston. He was diagnosed with Type 1 diabetes and received his first insulin injection to lower his blood sugar. There had been no long, drawn-out sickness or high fever preceding this day.
We now know that Beau was a carrier of latent antibodies that are characteristic of Type 1, that must have activated in his body.
The first several months were a blur. While Beau was in the hospital, he and I attended a three-day training class to learn how to count carbs, give injections, test blood sugar levels, calculate insulin, and other skills necessary for daily survival. Tim and I fully devoted ourselves to monitoring Beau around the clock, and aggressively sought information about how to manage his blood sugar levels. Our new reality had set in: Beau never would be able to serve his country in the military. On average, his life had been shortened by 10 years.
Beau has been diagnosed for 17 months. Managing diabetes is a normal part of our lives. We are still learning, but, for the most part, we keep Beau’s blood sugar in his target range by monitoring with a constant glucose monitor (CGM), which greatly reduces the need to do finger pokes to test his levels. Beau’s CGM is the Dexcom 6, and he wears it around the clock, on his arm or thigh. A small catheter is inserted into his body, allowing access to his blood. Every 5 minutes, his blood sugar level is displayed on his cellphone via Bluetooth and can be shared with others. Beyond seeing Beau’s real-time blood sugar levels, I can study trends and patterns to gain tighter control, which eventually will lead to longer life spans, and less complications for Type 1s who have access to the technology.
In June, Beau switched from insulin injections to the Omni Pod insulin pump, reducing his number of monthly injections from 180 or more, to 10. I change his pump every three days, and, because he’s so young, I do his pump and CGM changes while he sleeps. The pump has been life-changing for Beau! He no longer associates food with an injection, and I can give more accurate doses than is possible with injections.
The greatest difference between life before and after diabetes is the need always to be well prepared. When we are well prepared, there are few situations we can’t handle. Our family enjoys being spontaneous — camping, road trips, going to the beach with no certain plans. After Beau was diagnosed, we realized that spontaneity could put Beau in a medically compromising position. We still do all the things we did before, but with a large number of supplies in tow.
Beau is 6 years old and is in the first grade. Before he started kindergarten, I worked with his school to develop a 504 plan to ensure his safety at school. We also developed a medical plan of action for daily care, based on his doctor’s orders.
Outside of school, Beau enjoys art, playing the piano, South Cherokee Baseball and Impact Soccer. He has a very supportive baseball family that has rallied for him along the way. It is common to see Tim or me walk around the diamond or along the sidelines to keep Beau connected to his CGM, so we can monitor his blood sugar as he plays.
It is important for me to share Beau’s story, so unsuspecting parents can recognize the signs of Type 1. It commonly is misdiagnosed as a cold or the flu. Gradual weight loss, which I associated with exercise, is another common symptom that is overlooked. Fruity breath, fatigue, increased thirst, frequent urination, extreme hunger, irritability, and blurred vision are other indicators. Don’t be afraid to ask your doctor or pediatrician for a simple finger prick, so blood sugar levels can be assessed.
Having Type 1 is difficult, but, with new technology, and continual research, it is not the early death sentence it used to be. In less than a year and a half, we have figured out how to make it part of our routine. To all the families who fight this battle every day, don’t ever give up hope for a cure. You are stronger than you know. I will not let this condition stand in the way of Beau living a full life. He has accepted the regimen he must follow to remain healthy, and it exists in the background of the things he wants to accomplish and experience. As he often says, “My pancreas may have quit, but I did not.”
– Beth Embry-Houchens
Eli, age 4
‘Every moment of every day, this is his reality.’
May 24, 2017. A date we won’t ever forget. The day before, I made a quick call to the pediatrician’s office to ask about my 2 1/2-year-old son’s recent onset of insatiable thirst, hunger and leaking through diapers. I was encouraged that this was “just a phase” and not to worry. I insisted on a quick check-up the next day. On the way to the appointment, we got stuck in traffic, due to an accident, and I almost turned around and went home. Thankfully, I found a different route to the office. We went right back and the nurse started off by pricking Eli’s finger. The meter just read “Hi.” The nurse looked confused, I was confused, so she did it again with the same result. The nurse then scurried out of the room with a quick comment about the meter not working. The doctor came in and checked again. Same result. Only this time, the doctor looked at me, and I could see the urgent concern in his face. He insisted that we head straight to CHOA. He urged me to make phone calls on the way to arrange care for my two older kids who were with me, and to have my husband leave work and pack some bags for us and meet us at the hospital.
I was numb. A quick Google search revealed that a “Hi” reading was a blood sugar number over 600. Normal is about 70-120. In that moment, our lives were changed forever.
I remember coming home from the hospital two days later, with two types of insulin, meters, test strips, syringes, alcohol wipes, glucagon, glucose, and a whole bunch of formulas for calculating every carb that goes into my sweet little boy’s body. It was terrifying. All of a sudden, this little boy that I had successfully raised for 2 1/2 years became a little boy that I was entrusted with giving the right amount of insulin.
I had no idea how to keep him alive. The same medicine that would keep him alive also could kill him. That thought, even now, often keeps me up at night. And, we are no strangers to medical needs. Our 8-year-old was born at 29 weeks and spent seven weeks in the NICU. Our 6-year-old daughter has severe hearing loss, among other things, that we have had to navigate. Even our little Eli was a 17-day NICU graduate. Yet, this was the most life-altering diagnosis.
Once the shock wore off, and we began to grasp this new life, we became motivated to put every tool into Eli’s toolbox that we possibly could. We got a Dexcom (a type of continuous glucose monitor that sends his blood glucose levels to our phones even when he is not with us), and he has an insulin pump. Even with the pump, we have to calculate carbs correctly and control them. All the pump does is prevent 6-10 shots a day.
Technology is great, but not foolproof. On Eli’s birthday last December, he was celebrating at a bounce house with his siblings and cousins. I was closely watching his numbers and giving him glucose, but right before he started to climb into the play structure, I called him over to manually check his blood sugar, just on a hunch. As I did, he collapsed in front of me. Eli’s blood sugar was 23. Even with all of the technology in the world, we couldn’t prevent this crash, and it was scary. At that moment, my husband and I decided to add another tool to our toolbox.
This spring, after much research, we decided to trust Tattle Tail Scent Dogs in Salt Lake City, Utah, to give us Eli’s next tool, a diabetic alert dog. We had a shoe drive fundraiser to help us with the cost. The entire community was phenomenal, and we are so grateful. We collected 3,525 pairs of shoes in 60 days, which we got funds for, and the shoes were sent to developing nations.
On Aug. 9, we flew to Utah to meet Eli’s new companion and best friend. Eli named her Olivia, and the moment we met her, Eli’s blood sugar was high. She immediately let him know. We will be continuing to train her through Tattle Tails. She soon will be a fully trained service dog that will come with us everywhere to help with Eli’s care. For now, Olivia is all puppy, besides her amazing nose, but she is learning fast.
We are almost 2 1/2 years into this. Eli does not remember life before T1D. It’s a blessing and a curse. He had to grow up quickly. Even at 4, he knows more medical terminology, and how to read a nutrition label, better than many adults. However, every moment of every day, this is his reality; our reality. We chose to embrace it, and learn everything we can now, because one day Eli will become a teenager, an adult, and will have to carry this for the rest of his life. There are hard days, really hard days. In those times, we lean in to our family, our friends, the ever-supportive T1D community, and our faith. It has been such a bittersweet journey so far, and we love seeing the beautiful things rise from the challenge.
– Sydney Sullivan
Jennings, age 6
‘Carbs are his kryptonite, T1D is his label …’
I’m not sure anything prepares a parent to hear that their child is facing a lifetime of treatment for a disease that makes every meal a math lesson and requires constant blood checks. My wife and I faced that reality on Sept. 12, 2018.
Our son Jennings, age 5 at the time, was diagnosed by his pediatrician as a Type 1 diabetic during a visit right before a planned fall break trip. For several months prior, we’d noticed signs, such as bed-wetting, which we thought had become a thing of the past. He constantly was thirsty. We also saw significant mood swings.
Twice that spring and summer, we visited the doctor, and twice everything checked out fine. So, when Jennings became even pickier about eating and started losing weight, it was time for another doctor’s visit.
I remember the call so well. I was in an important meeting, and my phone rang. Like many people do, I sent the call to voicemail, and rejoined the discussion — only to have it ring again. I stepped out of my meeting and took the call. That’s when I got the news that we needed to pack for a visit of a few days to Children’s Healthcare of Atlanta to learn about Type 1 diabetes.
We learned more information in two days of classes at the hospital than I probably learned in an entire college course. For those not familiar, Type 1 diabetes (often referred to as juvenile diabetes) is not the same as your dad’s elevated blood sugar from a poor diet. We learned that Jennings’ pancreas was not working and never would again. He would need to offset the carbohydrates he consumes daily with insulin shots.
We learned to count carbs, work math formulas to determine shots, and how to factor in temperature changes, exercise or sickness. As a parent, your job is to protect your child. With Type 1, my new job is to protect Jennings, while also giving him six to nine shots a day. Imagine the life of a kindergartener who gets shots every day!
With the help of technology, we’ve been able to limit blood checks through a continuous glucose monitor (Dexcom G6) that sends bluetooth readings every 5 minutes to our cellphones and smartwatches. (If I’m looking at my phone or watch while we’re talking, I’m not being rude … I’m just making sure he’s in range.)
It’s been a wonderful and stressful year learning about this disease, understanding that each day is a new adventure, finding a larger family of others around the world with Type 1 diabetes, and being an advocate for a child who cannot do the carb formulas, yet.
Every day is a blessing. While a disease can take a family down, fighting for a sense of normalcy can make a family stronger. I know our family is now more focused on each moment, and being there for each other. Everywhere we go, we carry a lunchbox full of insulin, needles, a glucagon pen, blood glucose meter, test strips, lancets, alcohol swabs, apple juice boxes, glucose tablets, extra batteries, and treats for low blood sugar events (It’s so stylish!). We’re the family that gives shots at the table in the restaurant, not because we want to make you uncomfortable, but because it’s our everyday normal, and we hope you’ll ask questions so we can help you understand.
Jennings is like most 6-year-olds, interested in basketball, fortnite dances, and snuggles. Carbs are his kryptonite, Type 1 diabetes is his label, but meeting the challenges head on everyday makes Jennings my superhero.
For more information about Type 1 diabetes, please visit www.jdrf.org, or consider contributions to Camp Kudzu (campkudzu.org), a fantastic Georgia outreach program for children and families living with Type 1 diabetes.
– Billy Peppers
Take Control of T1D
By Dan Thrailkill
I was diagnosed with Type 1 Diabetes on Jan. 13, 1988. After living with my disease for 31-plus years, and working to maintain an A1C of 5.6% to 6.2%, I have two important pieces of advice that apply to every diabetic, regardless of type.
1. You are responsible for your disease, and your top priority always must be your health.
If you are the parent or the caregiver for a child with diabetes, your primary responsibility should be to equip them with the skills to take care of their disease independently as they approach adulthood. The best decision my parents made for me was to send me to a summer camp for kids with diabetes. This also will be the best decision you will ever make for them as a caregiver. Camp Kudzu is a summer camp located here in Georgia. Experiencing life with diabetes alongside other kids will show them that they are not the only one with this predicament, and give them an opportunity to make lifelong friends. If you are a recently diagnosed adult, find some diabetic friends that have chosen an active, healthy lifestyle and hang out.
2. Everything is normal with diabetes, and trial and error is the only way to learn what works for you.
CliffsNotes are not available for personal diabetic knowledge. The best way to learn what works best for your diabetes is trial and error. The only potential shortcut to obtaining this valuable “experience” is to learn from other diabetics with as much as or more experience than yourself. Determining what works best for your diabetes is the most gratifying accomplishment for any diabetic, knowing that it also can be a moving target, and change as you get older.
While diabetes is not treated the same today as it was when I was diagnosed, the basics have not changed, and likely always will remain the same.
One of the best compliments I can receive is when someone I do not know says: “but you don’t look diabetic.” I normally reply with: “Thank you, I try my best not to,” because that would mean not doing my best to take care of myself. My motto is: If I do not take care of my disease, someone else will have to, and that is not fair to them.
Follow Dan on Instagram @t1dant, or visit www.JDWoodstock.com.
Resources
Georgia Chapter of JDRF
www.jdrf.org/georgia
Leading the fight against Type 1 diabetes (T1D) by funding research, advocating for policies that accelerate access to new therapies, and providing a support network for millions of people around the world impacted by T1D.
Camp Kudzu
http://www.campkudzu.org/
Camp Kudzu provides camp experiences for families and summer camps for kids age 5
and older.
“We cannot wait until Eli is old enough this summer to begin their day camp,” Sydney Sullivan said. “Camp Kudzu is a place where T1D is the norm, and our kids get to build friendships with others T1s … they get to feel ‘normal’ for a week!”
T1D MOD Squad
www.t1dmodsquad.org
This California-based nonprofit helps children nationwide with grants to afford camp, supplies, emergencies, and diabetic alert dogs. This support organization has more than 15,000 members and is run by moms of T1 kids.
“Honestly, my No. 1 biggest source of support has been on Facebook,” Sullivan said. “There are a variety of T1D pages, but the night Eli was diagnosed, a friend (who also has a T1 son) directed me to T1D MOD Squad. MOD stands for Mothers of Diabetics. I had an instant family with them, and they are who I turn to first with questions.”
Other helpful Facebook groups
• Parents of Type 1 Children in Georgia
• GA Type 1 Diabetes Support Group
Leave a Reply