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Last year, one of Canberra mother Adrian Cottell's twin girls developed diabetic ketoacidosis while at school.
When Cottell went to pick up his then-15-year-old daughter, he noticed her daughter was “incredibly sick.”
“The moment she opened the door, I could smell her very distinctive acetone, ketone smell. [smell]. And it turned out that day she had fallen asleep in class and no one had called me,” Ms Cottell told ABC Radio Canberra.
“Her diabetes management plan says to call me if she feels drowsy or sluggish, but they didn't call.”
Diabetic ketoacidosis is a serious complication that can occur in diabetic patients. When ketoacidosis occurs, the body produces excess blood acids known as ketones.
“Diabetic ketoacidosis can cause brain damage, especially in children,” Kottel said.
Ms Cottell is used to advocating for her daughters in the ACT public school system. One when she was 2 years old and the other when she was 6 years old and she had been diagnosed with type 1 diabetes.
Since that day in 2023, her daughter has been seriously unwell, and Cottel said she went to the school to find out what happened, but there was no response.
She then took the matter to the ACT Civil and Administrative Tribunal (ACAT).
“The school was closed. They wouldn't talk to me even though there was another child at school with the same symptoms,” Kottel said.
“So I threw a Hail Mary.”
Kottel said there are typically visible signs that a person is entering diabetic ketoacidosis.
“They look like they're sleeping, but they're actually very sleepy, and then they go into diabetic ketoacidosis and their brain shuts down,” Kottel explained.
“She actually turned it off and fell asleep in class.”
After this incident, Kottel's daughter's health gradually deteriorated and she realized that she too had the virus.
Three days later, at 2 a.m., she “flipped” into a diabetic coma.
“She literally can't drink or eat. She's just lying there. She looked yellow and waxy,” Cottel said.
“She didn't respond to her name. She didn't respond to anything and she had very few functioning cells in her brain.
“He was unconscious. He was just breathing.”
Ms Cottell said she believed the situation would not have worsened if the school had followed her daughter's “sick day management plan.”
She said she has instructed schools on how to identify the signs of ketoacidosis.
“They should have called me to let me know that she was very unwell, and she should have followed the sick day plan,” Cottel said.
“I was so angry because I had begged the school to admit that she was diabetic and to make sure the staff was trained.”
A year later, Kottel's daughter has not fully recovered from the incident and has not returned to school.
“She had been hearing impaired for some time. She had inner ear problems that made it difficult for her to walk. She couldn't even get in the car without vomiting. So… We had to work really, really hard,” Kottel said.
“She has undergone brain scans, heart monitoring and physical therapy to regain her balance, but now requires medication.”
Ms Cottell said she had been fighting for awareness and training about diabetes and its co-morbidities in public schools in the ACT since her daughters first started school.
“Originally Canberra Hospital offered training. [to school staff], then reached capacity and was no longer able to provide training. So training the staff was left to the parents,” she said.
“Then in 2017 WorkSafe ACT stepped in and said parents were not allowed to take the training, so no training took place after that.”
Since then, all diabetes training has been delivered online, which she said was “clearly inadequate.”
“Not all children's diabetes is the same. My children have comorbidities that interact with their diabetes, but I couldn't admit it.” [information] It’s over,” she said.
“Parents must always manage their children's condition. They are not allowed to take their children home from the hospital unless they are competent. They are not allowed to leave their children in the care of others unless they are competent. It's not allowed.''
“But then can we just leave them alone in the schooling system where they are not trained?”
Then in 2020, Kottel's twins were no longer allowed to carry glucagon kits at school, which branded them “contraband,” she said.
“WorkSafe asked us to minimize our work. [diabetes management] We had planned it, so we did it…and then it got canceled by mistake,” Kottel said.
“And when we tried to put it back into the plan, they said, 'No, it's contraband.'
”[Glucagon] It's S3 medicine, It's the same as EpiPen, so you can buy it over the counter at a pharmacy. ”
Ms Cottell said she followed doctors' advice and decided the twins should carry the kits with them to school, but said it caused a lot of stress for them.
“In fact, my child was so worried about carrying contraband that he had to be seen by a psychologist,” Cottel said.
When Ms Cottell consulted ACAT about the situation in 2020, she called for improved communication and training for staff in the ACT Education Directorate.
However, after her child developed diabetic ketoacidosis at school in 2023, Ms Cottel went to the ACT Human Rights Commission, which referred the matter back to ACAT.
“I threw a Hail Mary,” Cottell said.
“The ACT Education Directorate has made it very clear that they are not working on glucagon or training.”
In February 2024, ACAT ordered the ACT Directorate for Education to “review procedures regarding glucagon administration in ACT public schools” and provide an update within six months.
ACAT also ruled that the directorate would “take all reasonable steps” to facilitate training in both glucagon administration and an individualized diabetes management plan at Ms Cotter's daughter's current school. .
The department “agreed to settle the claim without admission of liability in accordance with the terms set forth in the deed.”
“As a result of the public hearing, glucagon was allowed. Glucagon is no longer contraband and my child's school officials [are permitted] We need to be trained in that,” Kottel said.
“I'm really happy with the personalized training.”
Mr Cottell said the decision to allow training on diabetes management for individuals was also important.
“This is great because it allows us to identify comorbidities in children, such as celiac disease, ADHD, autism, and other conditions that can cause diabetes symptoms to look different,” Kottel said.
“We were overjoyed to get these changes. But we're still waiting for them to be made.”
In a statement to the ABC, the ACT Education Directorate said it is “currently working with Canberra Health Services and the Diabetes Peak Authority to ensure that best practice diabetes management procedures continue to be used in ACT public schools. ” he said.
“The department also works with Canberra Health Services to provide tailored diabetes management training, including the administration of glucagon for diabetic emergencies,” the spokesperson said.
“The board appreciates that parents bring important expertise to the table regarding their child's medical condition, which is why the school follows a diabetes management plan developed by the child's clinical team in consultation with the family.”
Editor's note:
A previous version of this article included three quotes from mothers of children with diabetes who stated that treatment of diabetic ketoacidosis requires administration of glucagon.
ABC was unable to independently verify this advice, so the quote was removed.
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