Community news and information for Pipestone, Minnesota
Thursday, October 13, 2022
Braylen Guardado, (left) and Claire Erks, (right), both 8, are Pipe- stone Area Schools third grade students that are living with type 1 diabetes. The two call themselves the diabetic squad, and have bonded as friends over the medical disorder they both are living with. S. Martinez
This fall, Braylen Guardado, 8, and Claire Erks, 8, both of Pipestone, will be entering the third grade at Pipestone Area Schools. Much like other children their age, they are energetic, enjoying their summer vacation playing outside and soaking up the sun before returning to the classroom and sharing stories of what they did with their freedom all summer long. Unlike other children, Braylen and Claire are living with type 1 diabetes, an incurable autoimmune disorder in which the body’s immune system does not recognize the cells of the pancreas that produce the hormone known as insulin (also known as beta cells) and therefore attacks those cells. According to the Boston Children’s Hospital, as a result of this disorder, the body is unable to produce enough insulin which regulates the amount of sugar in the blood.
Samantha Pankonen, Braylen’s mother, said that he was diagnosed three months before his fifth birthday, and she remembers the exact day he received his diagnosis.
“It was right before he would have been starting his second year of preschool,” Pankonen said. “It was August 24, 2018.”
Pankonen said her son was always a smaller child, but the typical warning signs of type 1 diabetes (weight loss, excessive drinking and urination) led her to believe that something was wrong medically.
“Those were the major things that stood out for us,” she said. “He also did not have much of an appetite.”
Pankonen took her son in to be examined, and when she received the type 1 diabetes diagnosis, she was taken aback.
“I felt overwhelmed,” she said. “It was a lot to take in. We have never had it on either side of our family so it was completely new for us.”
Erks recalls observing the same warning signs in her daughter as Pankonen observed in her son, the excessive thirst, frequent urination and weight loss. The difference for Claire, she said, was that she was hungry all the time and constantly trying to eat.
“We noticed the same signs and probably the last straw was the weight loss,” she said. “We decided it was time to take her in to get checked.”
Erks remembers the same feeling of being overwhelmed when Claire was diagnosed at around the age of five, and “surprised but not surprised.”
“I was surprised but not surprised at the same time,” she said. “We knew something was medically wrong but we didn’t have the specific diagnosis at the time.”
When the family received the news that Claire was a type 1 diabetic, Erks said that she did what any other mother would do, she set her fears aside and took charge of the situation.
“You take charge of it, you take hold,” she said. “Once you have the diagnosis you make a plan, and you put it into action you know? That’s what you do. You don’t turn your back on your kids and leave them to figure it out themselves.”
Type 1 and type 2 diabetes
According to the National Library of Medicine, diabetes is a reference to a group of diseases that are characterized by high levels of glucose in the blood, a result of the deficiency in production or function of insulin. In the medical world, there are two prevalent forms of diabetes, type 1 and type 2. According to the Cleveland Clinic in Cleveland, Ohio, the difference between type 1 and type 2, is that in type 1, the pancreas does not make any insulin and it is only treatable with insulin at this time, where as in type 2, the pancreas does not make enough insulin, and the disorder can be treated through lifestyle changes such as diet, exercise, and sometimes insulin and other prescriptions. Type 1, is heavily genetic although it is an autoimmune disorder and not all patients are genetically connected to it, like Claire who was tested and discovered hers is strictly autoimmune.
Dr. Fredrick K. Ness, a medical practitioner at the Pipestone Avera Clinic and one of 10 area healthcare providers recruited by the Indian Health Service that planned diabetes care program for the organization, has been practicing medicine since around 1985 and has worked with many patients dealing with the two prevalent types of diabetes.
According to Ness, his experience and sources show that although type 1 diabetes can appear at any age, it tends to “appear” at two noticeable peaks in life between the ages of 4-7 and 10-14. Type 1, Ness said, was a fatal disorder prior to the discovery of insulin in 1928.
“All of these (type 1 diabetes) patients died prior to 1928 with the discovery of insulin by Banting and Best,” Ness said. “Type 1 diabetes can be only controlled with insulin at this time. Insulin is life-saving for these patients.”
Ness cited information from the Centers For Disease Control and Prevention, stating that in 2016, the estimated prevalences of type 1 and type 2 diabetes were 0.55% (1.3 million U.S. adults) and 8.6% (21.0 million U.S. adults) respectively. Type 1 accounted for approximately 6% of diagnosed cases and type 2 for 91% of diagnosed cases.
“As a result I’ve seen far more type 2 diabetes than type 1,” he said.
The confusion between the two types, Pankonen said, is so common that even she was surprised to know that there was more than one type of the disorder.
“There are two types of diabetes, and people usually assume it is type 2 which is where my mind went first when Braylen was diagnosed,” she said. “So learning about type 1 was new for me and my family.”
Health impacts and challenges
Diabetics can experience a variety of health impacts when they are dealing with high or low blood sugar. For example, Braylen, his mother said, experiences headaches and dizziness when his blood sugar drops too low. Outside of the short term side effect, there are several long term risk factors that those living with the disorder must be aware of. Diabetes, Ness said, is the number one cause of kidney failure, dialysis and kidney transplant in America. Kidney transplant, Ness said, can make a world of difference for patients.
“I have had patients with kidney transplants tell me they felt like they were reborn,” he said. “They were no longer tied to the dialysis machine three times per week.”
Diabetes, Ness said, is also the number one cause of blindness in America and the number one cause of amputations of the lower extremities in America, and a major contributor to heart attack and stroke the number one causes of death in America.
The cost of treating these diseases is high, but can be potentially prevented or delayed, he said.
“These diseases are all extremely expensive,” Ness said. “On the positive side all of the complications of diabetes, lower extremity amputations, end stage renal disease and dialysis, blindness, heart disease and stroke can be prevented or delayed with treatment.”
For Braylen and Claire, transitioning to and from school (which includes some diet changes) and even transitioning seasons can impact their need for insulin. Pankonen said her son’s blood sugars seem more controllable at home, where she is able to regulate his diet better and monitor his activity level (more physical activity can increase the need for insulin).
“It’s a challenge at school,” she said. “I seem to control them better at home. The first few days of this summer were hard because all of his settings in his pump were based off of his activity and diet were programmed towards school. He needed more insulin it seems, it could be the heat too.”
Diabetics need to regularly have their eyes and teeth checked, due to the impact that the disorder can have on the healthy function of those systems.
A challenge both families faced early on before the kids were able to be put on an insulin pump, was watching the impact that having to do daily pokes to check their blood sugar and shots of insulin had emotionally on them.
“I was doing up to 17 finger pokes and shots a day on a five-year-old,” she said. “You see that side of them, when they say ‘Mommy I don’t want another poke. Mommy don’t check my blood sugar.’ You can see all the little pokes on their little fingertips and on their legs (where they received insulin) and it’s just tough.”’
Like many diabetics and others with health concerns, insurance issues are common, and prior to Claire getting approved for an insulin pump, supplies for pokes and shots are what were covered at the time, Erks said.
“Now she has great technology that can give her insulin when she’s getting a bit too high, or can shut off (stop delivering insulin) when she’s too low,” she said.
Erks said that she and Pankonen feel like “pioneer moms,” because of the unique situation that their children are in at Pipestone Area Schools.
“I’d say Samantha and I would be the “pioneer moms”’ she said. “We know for a fact that we have the youngest diabetic kids that they’ve seen in the school system for a long time. Also, they have a dual pair (both children) which is more unique than even some of the bigger school systems around here.”
With students diagnosed with type 1 diabetes being an extremely rare occurrence at PAS, Erks said that both she and Pankonen are doing their best to help the school system to understand the issues that their children face, and how to best care for their needs.
“I’ve given resources to the school and outside entities that could come in and help to train them on how to properly care for our kids,” Erks said. “There are free resources that will come in and train staff on the medical tools like the pump and glucose monitoring system, and other information.”
According to Erks, an organization called the PACER Center, which advocates for youth living with disabilities, has been connecting with schools and observing that many are now hiring a licensed nurse to actively monitor children with type 1 diabetes in their education system, something she hopes to see in the PAS system soon.
“I understand that it’s about a budget and that we may not have the funding now at PAS for that,” she said. “But I hope to see it in the budget soon, or for the school system to search for grant funding for this out of medical necessity.”
Another issue that both families face, Pankonen said, is the changing of medical staff at the school and caregivers in the classroom, creating an issue in continuity of care for their children.
“This past year was their third year in school and we both agree that it was a very difficult year,” Pankonen said. “They had a wonderful caregiver and then she quit. Then there was a new person in the nurse’s office and it was kind of a change.”
Erks said that both families would like to see continuity in care from their home life and during the summer to when they return to school in the fall.
“That’s how it works in healthcare with continuity in care and we would like to see more of it in the school system,” she said.
As far as the understanding that their peers have of the disorder, both Erks and Pankonen agree that their children’s friends have grown to understand the disorder and how it impacts their lives.
“The kids in their classroom are very aware of the situation and are supportive of them,” Erks said. “Maybe it’s because they’ve had it from kindergarten so it’s become normal to all of them.”
“Braylen was always worried that the other kids would look differently at him,” she said. “But I don’t think they do.”
Finding out that you have an incurable medical issue can be hard for anyone to process. For Claire and Braylen, one of the difficult aspects of dealing with type 1 diabetes is knowing they have to be more aware of their eating habits than other children their age.
“She (Claire) gets a little frustrated when she can’t eat a big carb snack before or after a meal,” Erks said. “You have to retrain them to sit down and eat a bigger meal because they can’t have a snack after a meal. Before they were diagnosed they were having two to three snacks a day at home or at daycare.”
Retraining them was difficult for the first few weeks, Erks and Pankonen said, but because of the young age at which the kids were diagnosed, there was less resistance in changing their eating habits than there would have been if they had been older.
Braylen, Pankonen said, was a little embarrassed when he first was diagnosed.
“He was a little embarrassed,” she said. “Like his Dexcom on his arm, he always wanted to hide it. When kids ask about his pump or Dexcom we tell him to tell them that it “helps keep me safe,” and that’s what he says. Now, he will show it to people and he is proud of it, and we are proud of him.”
Other challenges faced by the family include figuring out the best level of independence for their children that will help them to grow and be able to care for their diabetes themselves, while also providing a safe level of oversight.
“People don’t realize the issues of independence,” Pankonen said. “I try to let Braylen go (to events with other children) and he has a cell phone if he needs me. But it is difficult not being there all the time to keep an eye on him.”
Another issue that both Erks and Pankonen have run into is the misunderstanding many people have about the major differences in type 1 and type 2 diabetes.
“People get confused and want to link type 1 and type 2 diabetes to each other and they’re two completely different things,” she said. “I just feel like a lot of the population isn’t as educated about type 1. They think ‘Oh if you just eat your vegetables or drink your water you’ll be fine.’”
Pankonen said there is also a lot of misunderstanding for how the disorder works, and that many people have looked down on her thinking it was something she did that “caused” Braylen to become diabetic.
“It always feels like people are looking down on me,” she said. “They think it was something I did, like I gave Braylen too much sugar. But even if you manage it (type 1) you will always have it.”
Another misconception that many people have, Erks said, is that children diagnosed with type 1 diabetes will outgrow the disorder.
“I’ve heard that a lot before,” Erks said. “I’ve had people say, ‘Oh they’ll outgrow it,’ or, ‘Have you tried this? Or an herbal supplement.’ They also assume that just because Claire has it, my other children do too and they don’t.”’
Braylen Guardado, 8, of Pipe- stone, wearing his Dexcom Continuous Glucose Monitoring System. Braylen was diagnosed with type 1 diabetes around the age of five. S. Martinez
In general, treatment for type 1 diabetes includes insulin therapy alongside diet management (not related to weight management, but rather to carb management and other factors). However, medical advancements have found that there is hope in a pancreas transplant for many type 1 diabetics.
According to the University of Wisconsin Health website, a pancreas transplant could mean that a patient suffering with diabetes could see an elimination in the need for insulin therapy and other diabetes related issues. Additionally, those with the disease and poor kidney function may be eligible for a combined kidney and pancreas transplant, drastically improving their quality of life.
In his current condition, Braylen uses the Omnipod tubeless insulin pump to treat his condition. “It is the only tubeless one and that’s why we went for it,” his mother said. “He was about a year in a half into his diagnosis before we got him on the pump so he didn’t have to do shots. The tubeless pump is great because he is a wild child, so I knew wires and tubes wouldn’t work for him.”
Braylen uses the Dexcom Continuous Glucose Monitoring (CGM) System, which he started using about four months after he was diagnosed. This system comes with a phone application that sends his blood sugar and other important information directly to a cell phone he carries, eliminating the need for him to check his blood sugar manually. Much like social media, the app allows his “followers” to receive notifications when his blood sugar dips too low or other important issues arise.
“His information gets sent to his phone and then to his “followers” so it goes to my phone too,” Pankonen said. “It also goes to my boyfriend’s phone and the school nurse gets notifications too, and a paraprofessional in the classroom.”
Claire uses the t:slim pump, which Claire’s mother says has control acute technology. According to the manufacturer’s website, this technology helps to automatically adjust insulin dosing to help prevent highs and lows in blood sugar, and the system is tubed. For her CGM, she uses the same system as Braylen.
Although counting carbs and figuring out how much insulin someone needs can be a daunting mathematical equation for many adults, both Pankonen and Erks say their children have a really good grasp on the concept for their age, and both are able to understand and make the healthy eating choices they need in order to maintain a healthy blood sugar level.
“Braylen is very smart,” she said. “He knows when to say “Hey I can’t have this?’ she said. “He is even to the point where he can give himself insulin.”
“Claire also knows what she can and can’t have,” Erks said. “She is able to understand the impact of what she eats on her blood sugar.”
Claire Erks, 8, of Pipestone, going through the information trans- ferred from her insulin pump and glucose monitoring system to her phone. Claire was diagnosed with type 1 diabetes around the age of five. S. Martinez
The most important thing for both children to know, Erks said, is the impact that diet and exercise can have on the management of their health.
“It’s really about diet and exercise, and how well we train our kids at this young age. Whatever we teach them now they will bring into adulthood with them. That’s what Samantha and I are trying to do now. Teach our kids to know when they can’t have that high carb snack, or to participate in activities and not sit it out just because they’re diabetic, but to also know what kind of insulin adjustments they’ll need for that shift in activity.”
From the perspective of an eight-year-old
When she was first diagnosed with type 1 diabetes, Claire said she remembers going to the children’s hospital in Sioux Falls a lot, and being a little scared at first.
“When I first got it I had to be in this big building in Sioux Falls a lot,” she said. “When I first got it I was really scared when I had to go to the big building because I never had diabetes and I did not know what it was all about. I also remember I had to get lots of shots before I got a pump with needles and they’d have to put it in my legs, my arms or my belly and I didn’t like that.”
Now, Claire said she isn’t scared anymore because she has learned a lot about what she has and how to live with it.
“Now I know what to do,” she said. “Except sometimes I need help with some stuff that I don’t know how to do but my mom teaches me.”
Braylen remembers when he first was diagnosed with type 1 diabetes.
“I got it when I was three I think and I was living at my grandma’s and I was really thirsty and I never ate,” he said. “So my mom took me to the Sanford Castle and I didn’t know what it was and my mom said it was a hotel. Every morning I had pineapple for breakfast. I love pineapple. I didn’t know until the doctors came, and they started teaching my mom how to give me shots.”
Both Braylen and Claire express a positive outlook on living with the disorder, saying that having it has taught them some valuable lessons.
“It’s taught me to not eat too much sugar,” Braylen said.
“Unless we are really low, then our parents will let us have some sweets,” Claire said.
As far as the support they get from their friends, Claire said that they are supportive of her, but sometimes they forget what she is dealing with.
“A lot of my friends know, but sometimes if I don’t see them for a long time, they forget,” she said.
Although he was uneasy with the diagnosis at first, Braylen said he feels much better about it now.
“I kind of was nervous,” he said. “But now I feel excellent. Sometimes I give myself my own Bolus (a large or single dose of medicine, in this case, insulin).”
“I give myself my own Bolus too,” Claire said. “But sometimes I need help because it’s hard for me to add that all up myself. But I learned a lot from my people, from my doctor and my parents.”
Another challenge both kids face is criticism from other kids who don’t understand why Braylen and Claire sometimes have snacks during class when they cannot.
“Sometimes other kids get jealous because we get snacks in the middle of class when they didn’t get to eat a snack,” Claire said.
“Yeah and they say ‘How did they get a snack,’ ’” Braylen said.
“Yeah they say “That’s not fair that they get a snack and we don’t,”’ Claire said. “Or they’ll ask us, “Why do you have a phone? That’s not fair. We are older than you and we don’t have a phone. Why do you?” So I have to tell them, I have diabetes, and they have to understand all about it.”’
Although they sometimes face opposition from those who don’t understand their situation, both children said they are happy to have each other to go through everything with.
Braylen Guardado, 8, of Pipestone, watches his friend and fellow type 1 diabetic, Claire Erks, 8, also of Pipestone, as she does a flip on the trampoline in her backyard. Despite living with type 1 diabetes and having medical technology like an insulin pump attached to them, both children remain active and work to lead a normal life. S. Martinez
“It feels good (to have each other) because we’ve known each other for a while and we get to go to the same place together because we have diabetes,” Claire said. “And we know a lot about it so we can explain it to other people so it’s good to have each other.”
“Claire calls us the diabetic squad,” Braylen chuckled.
“My (diabetes club name) is CTE, for Claire Tornado Erks,” she said.
“And mine is BJG, Braylen J Guardado,” he said.
Through their friendship, the children say they have developed a better understanding of what it is like to live with type 1 diabetes, and that if another kid their age was diagnosed, they would have some solid advice to give them.
“I’d say it’s alright to have diabetes,” Braylen said. “We’re all the same people but we’re all unique.”
“And if we knew the kid we would probably tell them “Hey you can hang out with us because you know how it feels to have diabetes,”’ Claire said.
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Community news and information for Pipestone, Minnesota