“Five-year-old Ayanah White of St. Louis has kindergarten basics and early learning as her main focus these days at her new school. That was not the case back in the spring at preschool, shortly after her birthday. It started with a naptime incident at school.
‘She ended up using the bathroom on herself, and they told me when I picked her up…they said she didn’t even say that she had to go,’ her mother, Ayrrica Earl explained. During bedtime that night, Ayanah had another urgent ‘gotta go’ episode.
‘She ended up, that night, jumping up, saying she had to use the restroom – in a big rush. I didn’t think anything of it. I let her go to the restroom. She came back, laid down –soon as she got comfortable, she jumped back up again. Gotta pee again –in a big rush.’
This happened three or four times.
‘About the time she got to the fourth, she was also hollering about how thirsty she was,’ her mother said. ‘I’m like, I’m not about to give her anything to drink, after she’s been going to the bathroom like that,’ her mom said. ‘I thought she had a bladder infection.’
Earl quickly responded to her child’s unusual symptoms by getting her into her pediatrician the next day, resulting in a swift diagnosis, which is important.
She began by explaining Ayanah’s symptoms from the day before.
‘As I got further into it, he said, ‘let’s test for something else to see if it’s either a bladder infection…but if it’s diabetes, if it’s her sugar, I can tell you right now,’’ Earl said. ‘He had them to run the test. He came back in and he closed the door…he was like, ‘It’s diabetes…her blood sugars are off the chart.’’
Earl and her daughter were sent straight from the doctor’s office to Children’s Hospital for admittance. Ayanah had just two symptoms – extreme thirst and urgent need to urinate. Other symptoms for type l diabetes include a fruity odor on the breath, labored breathing, or even a stupor or unconsciousness.
‘They told me there at the hospital that it was type 1 and she had to have insulin,’ Earl said. ‘They told me basically, what type 1 is –that her pancreas shut down. By her pancreas shutting down, we have to give her the insulin to make the sugar work. The sugar is there, but it’s not going to go anywhere unless the [insulin] is breaking it down.’
The total lack of insulin, resulting in high blood glucose or sugar levels is the hallmark of type 1 diabetes. Insulin is used by the body to turn glucose into energy for the cells. Somehow, the body’s immune system attacks the insulin-producing beta cells in the pancreas and destroys them. When the pancreas produces little or no insulin, the person becomes insulin dependent, requiring insulin shots throughout the day or insulin pumps to live.
Type 1 diabetes usually occurs in children and youth (thus, the old name – juvenile diabetes), but can appear in adults. Though it is a lifelong condition, proper management allows type 1 diabetics to live long and healthy lives.
‘There is not uncommonly, an inciting event that sets it off. Mumps is one illness that can inflame the pancreas and act as the trigger,’ said diabetes expert Dr. Ralph Schmeltz, president of the Pennsylvania Medical Society. ‘Even a severe cold or other stress can set it off. Once insulin production stops, the symptoms appear.’
He said children with type 1 diabetes may also be restless, apathetic and have trouble functioning in school. He said if you notice these signs, talk to a doctor immediately.
But what it meant immediately for Ayrrica and Ayanah, was learning a new way of life for the family, which involved needles, counting carbs and regular monitoring of blood sugar levels. They stayed at the hospital for a few days to get their new routine down before having to do it own their own.
‘We were there for four days. At the beginning, they did everything for her. Then by day three, I had to start giving her insulin. I had to count up all of her carbs, which was easy, because they made the menu –but I still had to know exactly where it fell on a chart to give her her medication,’ Ayanah’s mom explained. ‘That evening, I had to take courses – teaching me about diabetes…on nutrition…and all the paper work I needed.’
Ayrrica Earl is a parent who hates getting stuck with needles. She had to overcome that fear, so her daughter could learn and accept that they are necessary.
‘I had to learn to first stick myself, and I had to do it in front of her. They talked to me and said, ‘Trust me,’ you’re not even going to feel it, and the way you feel it is how she is going to feel it,’’ Earl said.
In addition to having to self-stick to test her blood sugar, Earl said, ‘I had to draw [insulin] and stick myself with the syringe in front of her. That way, she would know – it’s fine.’
Through the St. Louis deseg program, Earl sent her daughter to a southwest St. Louis County elementary school for kindergarten in August. Ayrrica said she spoke to administrators and the teacher about Ayanah’s unique needs due to type 1 diabetes.
Heading west didn’t work.
During the child’s short stay at the school, Earl said rather than accommodating the child’s needs to drink water at her desk and take frequent bathroom breaks, her mother alleges diabetes injections were not given properly, or not at all and instead, Ayanah was typecast into being a behavior problem.
‘They had the doctor’s note stating water and bathroom at all times; those are the two main things that go with her blood sugar. That’s a sign that’s letting you know she is getting ready to go high [blood sugar level] and they gave you all of the emotions that she would portray when her blood sugars are not intact, Earl said.
‘Well—they ignored it.
Basically, they didn’t give the teacher all the information she needed in the beginning, so it got to a point … she would be thirsty and they would tell her she couldn’t go, because it was not water time yet.,’ Ayanah’s mother described. ‘By them telling her she couldn’t have water, she would leave the class anyway, telling them she is thirsty and getting some water. They would chase her down, telling her she could not go to the water fountain, so basically, she ran through the school, trying to go to the fountain, but they were stopping her and since she never made it to the water fountain, they would take her to the principal’s office – still no water.’
After repeated calls, claiming the child was acting out in school, Earl said she wound up pulling Ayanah out altogether.
Fortunately, Earl had applied for another school and found a much more supportive environment for Ayanah at a St. Louis charter school, Imagine Academy. Ayanah gets four to five insulin injections each day.
‘At school, they do her breakfast insulin and her lunch. When she comes home, I do her dinner and her bedtime,’ Earl said.
The National Diabetes Education Program has an resource guide, ‘Helping the Student with Diabetes Succeed: A Guide for School Personnel,’ available online at http://ndep.nih.gov to help the school, health care team, parents and students in effective diabetes management at school.
The latest data available from the American Diabetes Association says type 1 diabetes affects about in about 1 in every 400 to 600 children and adolescents. Ayanah and others with Type 1 are in the 5 to 10 percent of all diabetes cases.
Although an autoimmune disorder (autoimmune means the body is fighting itself) is suspected in its development, it is still unknown how to prevent Type 1 diabetes. The Juvenile Diabetes Research Foundation funds studies that hopefully will lead to better treatment and a cure.
‘We are proud that we continue to work closely with the School of Medicine on projects that make a big difference in the future of diabetes research. Locally, Washington University has one of the broadest diabetes projects (in the world) on islet cell separation,’ said Marie Davis, executive director of the local chapter of the Juvenile Diabetes Research Foundation. ‘Nationally, JRDF sponsored over $100 million in research, 80 percent of which is going to help both type 1 and type 2. One of the most important research projects nationally is in complications, which affects all people with diabetes, both those with type 1 and type 2.’
The National Institutes of Health (NIH) reports that a key gene region has been identified that contributes to nearly half the increased risk of developing type 1 diabetes and scientists have identified other genes associated with susceptibility and continue looking for others. Looking toward the future, the NIH says it is poised to make predictions of who will develop type 1 diabetes, its complications, to personalize individual treatments and to use this information to halt the disease before it starts.
The most prevalent form of diabetes, Type 2, is also the one that is most preventable, through dietary changes and incorporating regular exercise. It is also rampant in African American communities.
Gestational diabetes can occur in women during pregnancy that goes away after delivery. It occurs later in the pregnancy, after the baby is formed and while it is growing. The ADA says while most women with gestational diabetes deliver healthy babies, some newborns can experience complications, such as being overweight and with breathing problems. Gestational diabetes could put the child at risk for obesity and type 2 diabetes. Women who have experienced gestational diabetes also have a higher lifetime risk of developing type 2 diabetes.
For more information on diabetes, go to www.jdrfstl.org, www.diabetes.org,
National Institutes for Diabetes and Digestive and Kidney Diseases at www.niddk.gov.”
This article was published in St. Louis American Health Matters magazine on Nov. 5, 2010.