Three-year-old Joseph’s flu-like symptoms were the first indicator something was wrong. “It was odd because he was only vomiting at night and he was really lethargic during the day,” said his mother Alicia. “We were struggling with potty training anyway, but he started peeing everywhere and was just guzzling liquids.”
Alicia took Joseph to the doctor on a Friday and was told to wait and see if he got better over the weekend, but an on-call doctor flagged Joseph’s file and called the family that night to say Joseph’s symptoms were concerning.
“We caught his Type 1 Diabetes early and owe it all to that doctor,” said Alicia. “He very well could have saved Joseph’s life.”
Joseph got his first insulin shot at the hospital where his parents attended their first parent education class. It’s common procedure for families to stay in the hospital for three to five days upon a child’s Type 1 Diabetes diagnosis to learn how to manage the disease. “It is the most overwhelming thing a parent could go through,” said Alicia.
Joseph’s blood sugar was in the mid 400s. Normal is 80-120. “I was hysterical,” said Alicia. “At first I thought, our son isn’t over weight. He’s healthy. Unfortunately that’s the biggest stigma that comes with the disease.”
Type 1 and Type 2 Diabetes are not the same
Type 1 Diabetes is an autoimmune disorder where the pancreas stops producing insulin so the body can’t convert sugar into energy. It’s the rarer form of the disease, representing only 5 to 10 out of 100 people who have diabetes. Sarah, whose daughter Grace was diagnosed when she was 6, explained, “That’s why you pee all the time. Your body is trying to get rid of the sugar.”
“When your blood sugar is high,” she sid, “you feel sick. When it’s low, you can pass out.” Now 10, Grace said when it’s low “it feels like her head is empty and there’s no blood.”
With Type 2 Diabetes, the body makes insulin but isn’t able to use it properly. Unlike Type 1, which can’t be prevented and for which there is no cure, Type 2 can be prevented or delayed by adopting a healthy lifestyle. “Many people think the two are the same,” said Alicia. “People say all the time, ‘Joseph just needs to exercise and change his diet,’ or ‘He can eat this. It’s sugar free!’ It’s very difficult to fight that stereotype.”
Type 1 Diabetes is a marathon, not a sprint
“It’s something you’ll always have to manage, every minute of the day,” said Sarah.
“There’s no relaxing, there’s no breaks. There’s no getting it under control,” added Alicia. “If he’s sick or growing he’ll have high blood sugar. The weather and exercise even affects it. We’re teaching him now how to recognize how his body feels so he can take care of it himself one day.”
“Our endocrinologist said it best: this is a marathon, not a sprint,” continued Alicia. “This is the only disease where we make every single medical decision, every single day.
Both children must prick their fingers 7 to 10 times daily to test their blood sugar. Instead of insulin shots, both wear an insulin pump attached to their stomachs. Yet, “When we change his pump every three days that means pain,” said Alicia. “He never gets used to being stabbed with something. What he’s endured in the past year and a half I wouldn’t wish upon anybody.”
The mothers count carbohydrates and input those numbers into the pump to regulate the amount of insulin it delivers. “You learn very quickly the glycemic index,” said Alicia. “We weigh everything and portion it out everyday.”
Joseph also wears a Continuous Glucose Monitor, which gives a blood sugar update every five minutes.
“For the rest of his life he’ll have to deal with this disease, manage it, and have the financial burden,” said Alicia. “It’s very expensive.”
Because one of the most dangerous times for a diabetic is when he or she is sleeping at night because blood sugar is unstable, both families use service dogs that are trained to smell their child’s specific scent and low and high blood sugar.
Children 12 and older are eligible for free service dogs, but the Joseph and Grace’s families paid for them on their own and by fundraising for that extra level of security.
Grace’s family got Lexi from Canine Hope for Diabetics in Riverside, California. “When she smells – and she’s always looking for that smell- she stays on ‘her place,’” said Sarah. “We keep Lexi around Grace whenever she’s home. If Lexi alerts us and she’s right, Lexi gets to be petted as her reward. That’s why people shouldn’t pet service dogs. If they were pet all the time they wouldn’t do their jobs.”
Sarah said service dogs are a decision not to be taken lightly. “The dog is an additional tool to help us manage Grace’s blood sugar, but it’s still a lot of responsibility because you need to have it with you at all times,” she said. She said it’s also a liability to send Lexi to school with Grace, though administration at her school has been great. Sarah hopes once Grace starts middle school she can be Lexi’s primary handler.
Joseph’s dog Hope came to them as a puppy from Warren Retrievers in Virginia. “She alerts multiple times a day,” said Alicia. “If he’s low she’ll start yawning or nose us. She’ll paw us when his blood sugar is high.” They’re currently training Hope to respond immediately to, “What is he?”
Alicia said Hope is 30 minutes ahead of the CGM. “At the end of training she’ll even have a button to push for medical dispatch,” she said. “It’s amazing to actually see it happen.”
Both mothers said it’s their greatest wish to find a cure and that greater awareness will reduce stigmas. “We bear the burden that if we don’t manage it he could go blind or need a kidney or pancreas transplant or lose a limb,” said Alicia. “There’s been little medical advancement since insulin was discovered. It’s just heartbreaking.”
Type 1 Diabetes Symptoms
Extreme hunger and thirst