Raising kids with diabetes

Eating the right food is one of the ways to manage the disease

With no cure for diabetes, the disease is now developing in children globally.

SA is not immune to little ones getting diabetes, and in the absence of a cure any time soon, many parents are resorting to various diabetes groups on social media. These support groups have been established as a platform for parents to help each other with the challenges they face daily.

There is no confirmed figure from the government of how many people live with diabetes in the country. The country has been relying on the numbers estimated by the International Diabetes Federation. The prediction has been more than 4.2-million people have diabetes in SA.

The disease is now growing in children with many parents confirming on various diabetes support groups. Kids commonly develop type 1 diabetes which was once called insulin-dependent or juvenile diabetes. It often develops in children, teens, and young adults. It can happen at any age, but it appears at two noticeable peaks, between the ages of four and seven years old and in children between 10 and 14 years old.

Type 1 is a chronic condition in which the pancreas produces little or no insulin. Symptoms of this disease include excessive thirst leading to too much drinking of water, frequent urination, bedwetting at night, tiredness, excessive hunger and eating a lot, losing weight and blurred vision.

If overlooked, diabetes can cause long-term complications which will affect every aspect of the lives of children.

Parents who raise children with diabetes have told Sowetan that it is hard to accept when the doctors share the devastating news. A mother from Meadowlands in Soweto, Nthabiseng Phetoe, said it is stressful because one is sometimes uncertain about the child's diagnosis and prognosis.

Her daughter Atlegang, nine, has been living with type 1 diabetes for five years. At the age of four, Atlegang started wetting the bed, drinking too much water due to persistent thirst and losing weight. Phetoe described her situation to raise a child with diabetes as dire since she is unemployed. The girl is receiving treatment from Chris Hani Baragwanath Hospital.

“This disease is very complex. When you think you know it, it can show you miracles. In 2021, my child was diagnosed with Nephropathy, her sugar levels were always stable, but the doctor and nurses told me that we are not managing her condition too well. As parents, we need to be trained about diabetes more often because we all have different opinions and values when it comes to managing this disease.

“If there is a new diabetes technology introduced to help people living with the condition, as parents we must be brought together to be introduced to this new thing. In the absence of a cure we are keen as parents to learn any innovation, be it a testing machine or blood glucose patch or monitor as long as it has been approved by SAHPRA [South African Health Products Regulatory Authority] and the health department,” said Phethoe.

Another parent, Lauren Campbell, is raising an eight-year-old diabetic daughter, Sienna. The diagnosis of a child leads parents to a lot of emotions. Sienna was diagnosed in May 2022 when she was just six years old. At the time, she was a bubbly and fun-loving girl who enjoyed her hockey. She now injects insulin daily to carry on with life.

“It is extremely stressful but we manage well. Taking care of our little girl is a marathon, not a sprint. There will be ups and downs but as long as you are dedicated and supportive, it will all be OK. We take it one day at a time, said Campbell.

Genevieve Cloete is another stressful, single mother fighting daily to protect her 13-year-old daughter Genesa from eye damage, stroke, kidney failure, gum diseases and heart complications due to uncontrolled diabetes.

Genesa has been living with insulin-dependent diabetes for the past 14 months. She loves pasta, especially macaroni and cheese, pizza and fruit salads. The teen girl from Concordia, near Springbok in the Northern Cape, likes to sketch and play netball. But the disease is depriving her of excelling in her favourite sport because her sugar level drops quickly more often.

“It is very expensive for me because I was forced to introduce my daughter to a continuous glucose monitoring device. It costs us nearly R2,500 per month for the device. This device is connected to her arm. I have an App on my smartphone linked to the device. This machine reads the sugar levels throughout the day and night. It then transmits the sugar level reading to the phone. We are then able to read the sugar level live from the phone.

“We no longer prick her finger to check the blood sugar level. It was so stressful to wake her up at midnight to Test the levels of glucose ” said Cloete.

Cloete gets comfort with her daughter at school because the educators understand the disease and are able to co-parent. She is however keeping her phone closer to her while at work waiting for any emergency call from the school. Cloete said she finds it difficult to get used to her daughter's challenge of her blood sugar level just quickly dropping all the time.

Tips to help parents finding it difficult to raise their diabetic children:

● Teach them to eat the right food,

● Talk them through the importance of injecting themselves to take insulin,

● Train them how to take insulin, and how to do a blood sugar or glucose Test by pricking their fingers. Kids learn a lot from their parents,

● Keep their blood sugar level all the time within the required healthy range of between five and seven millimoles,

● No one likes needles. To replace finger pricking using needles buy them the blood glucose monitoring device that they wear on their arms to monitor glucose levels throughout the day and night, without pains or bleeding,

● Help them with psychological support to accept their condition. They are not different from other children. Tell them it is not their fault or your fault to have diabetes,

● Read a lot about the disease so you are well informed to answer their questions. Don't leave everything to the doctors or nurses. Take ownership as a parent,

● Allow them to ask questions and listen with care. Children count on their parents to make them feel good and get advice.

Molemane is a diabetes activist who has lived four decades with the condition. He is also a senior journalist at KayaFM.