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Child’s rare genetic disorder prompts parents to launch support group

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When a 15-day-old baby, who had a bout of mild diarrhoea and vomiting became severely dehydrated, the parents, though worried, did not sense something could be seriously wrong. However, they were shocked when their doctor diagnosed the baby with Congenital Adrenal Hyperplasia (CAH).

CAH is an inherited disorder that affects the adrenal glands where the glands cannot produce cortisol and aldosterone, and instead produce an unwanted excess amount of androgens.

A child with CAH lacks enzymes the adrenal glands use to produce hormones that help regulate metabolism, the immune system, blood pressure, and other essential functions. Parents with children suffering from it often have great difficulty in the upbringing of the child, including treatment, getting school admission and other support issues.

For the first time, Shyam Nair and Deepa Kannan, parents of a CAH child, have started a support group called ‘CAH Support India’ ( www.cahindia,org ) involving a community of parents, grandparents and caregivers of CAH children. The International Coalition for Endocrine Patient Support Organisations worldwide has listed this support group as the first such group for endocrine disorders in India.

The couple has also created a closed Facebook group for parents and endocrinologists https://www.facebook.com/groups/433557750183212/ and a Facebook page called Omkar’s journey with Congenital Adrenal Hyperplasia to chronicle all possible events in the life of a child with CAH . The link is https://m.facebook.com/Omkars-journey-with-Congenital-Adrenal-Hyperplasia-872407369539040/

Shaila S. Bhattacharyya, paediatric endocrinologist at Manipal Hospitals, who is also part of the support group, said: “A CAH child gets severely dehydrated even with a mild episode of diarrhoea and needs hospitalisation, which is stressful both for the child and the caregivers.”

Although about one in 10,000 children are born with CAH, awareness about the condition is low. It is either not detected early or is misdiagnosed and turns fatal in most children within months of their birth. A neonatal hormone test 17-OHP should be done to screen for CAH in children before symptoms appear. “However, not all hospitals do this test,” the doctor added.

Ms. Deepa Kannan, a yoga teacher, said she and her husband are trying to spread awareness about the condition, which is not known even in educated circles. “Having experienced the challenges in bringing up our child, who is seven years old now, our aim is to support parents and help them in bringing up their children,” she told The Hindu.

Narrating how difficult it is for CAH children to get admission in regular schools as the child needs continuous monitoring, she said the aim of the support group is to change this mindset of schools. “Such discrimination towards children for no fault of theirs is unfair,” she said.

References

The Hindu, BENGALURU, JUNE 14
posted Jun 14, 2017 by Sidharth Appu

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Engaging children while reading to them can better activate their brains, say scientists who suggest that simply speaking words aloud from a book may not be enough to improve cognitive development in toddlers. The study involved functional MRI scans of 22 4-year-old girls to explore the link between engagement and verbal interactivity during a mother-child reading observation and neural activation and connectivity during a story listening task.

http://www.deccanheraldepaper.com/

Children exhibiting greater interest in the narrative showed increased activation in right-sided cerebellar areas of the brain, thought to support cognitive skill acquisition and refinement via connection to language, association and executive function areas.

The study, led by researchers at Cincinnati Children's Hospital Medical Centre in the US, reinforces the value of "dialogic reading," where the child is encouraged to actively participate. "The takeaway for parents in this study is that they should engage more when reading with their child, ask questions, have them turn the page, and interact with each other," said John Hutton, a pediatrician at Cincinnati Children's Hospital and lead author of the study.

"In turn, this could fuel brain activation - or turbocharge the development of literacy skills, particularly comprehension, in preschool aged children," explained Hutton.

+1 vote

Here is a really cool development!

According to this piece by Tanu Kulkarni, in The Hindu (full story with original link below) parents of school going kids in Bengaluru are finally feeling the urge to splurge on 'learning Kannada. If you have been in Bangalore you have certainly heard the now famous, 'kannad gottilla' catch all phrase, that simply is the ultimate excuse for most people who will claim their passage on the basis of not knowing the language. But not any more if the state government decides to have its say.

Again we dont know for sure if this is a pure election gimmick by the state government angling for votes or a genuine attempt to breathe some life into one of the most fascinating ancient languages and culture vehicles of India: Kannada. 
Read on for more.

Why Parents in Bengaluru are in mad rush to learn Kannada

Unexpected fallout of the State government’s move to make language a compulsory subject in school 
After years of going about life without knowing Kannada, parents in Bengaluru are now scrambling to learn the local language and its script. From joining ...

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+1 vote

Source: DC

Mysuru: Scion of erstwhile royal family of Mysuru Yaduveer Krishnadatta Chamaraja Wadiyar, who had once inspired government school children by becoming a teacher at a programme hosted by Kalisu Foundation, is now brand ambassador for the NGO. The Foundation strives to improve the quality of education in government schools.

Yaduveer will motivate kids at government schools henceforth through the programme, ‘Learn from Maharaja,’ besides playing the advisory role by contributing his ideas on improving the quality of education.

As many as 250 kids at a government school at Kumbar Koppal, Mysuru, had the privilege of having Mr Yaduveer as their teacher for 45 minutes, interacting with him at a programme, here on Thursday. He taught the kids with a power point presentation and spoke about the glory of Mysuru and importance of education while stressing on environment protection, cleanliness, good manners and good habits. 

The enthusiastic kids who learnt that Mr Yaduveer will henceforth visit them frequently, were not just keen on knowing about his favourite colour, they even wanted to know how to be fit like him. He smilingly answered that he liked blue colour and said that kids must eat right healthy, nutritious food instead of junk food, and lay emphasis on physical exercise to keep them fit and healthy. 

When mediapersons asked if he planned to enter politics, he said, “Not in the near future. And I have no interest in politics in fact. I wish to involve myself in activities to serve society, I would wish to focus on developing government school education through the NGO.” Founder and CEO of Kalisu M.M. Nikilesh spoke.

+2 votes

Source:BlrMirror

Motaganahalli in Magadi is another obscure village which is crying for attention. A stroll through the village, around 60 km from Bengaluru, reveals the sad state of affairs: poor roads, crumbling infrastructure, power outages and heaps of garbage strewn all across the hamlet. The government school in the hamlet too has stories of neglect and apathy to tell.

But there is hope: the milieu is fast changing, thanks to a bunch of schoolchildren determined to bring about a change using technology. In fact, the students had been running from pillar to post to solve the civic issues plaguing the school and village. Besieged by filth, students found it quite impossible to sit in the classrooms because of the stink the garbage heaps emanated.

Even the teachers suffered in silence, but not Gen Next. The students of Government Higher Primary School at Motaganahalli, aided by tablets and cameras, walked up to the gram panchayat office, raising some tough questions to authorities. Remember, the ‘grilling session’ was being recorded. Perhaps, the explosion of visual media was an inspiration to embrace the technology. Answers were hard to come by, but they wouldn’t budge. Donning the role of ‘citizen journalists’, the students — Rakesh (class V), Darshan Gowda (class VI), Dileep M J (class VI), Deepashri (class VI), Monica M (class VII), Amrutha Varshini (class VIII) — stormed the gram panchayath office, posing several questions to gram panchayat president Padmavathi Jayaram. Amrutha Varshini said, “All the students and visitors to our school were unhappy with the foul smell emanating from the open drains in front of our school.

Since the classrooms were buzzing with flies and rodents, there were health hazards as well.” Monica M said, “People from other areas would come and wash their clothes on the drains. They would never clean and the dirty water was overflowing.” The teachers, including the headmaster, tried to clear the mess by speaking to officials and villagers, but nothing worked. What worked was the students’ willpower, aided by a potential weapon: technology.

The school in Motaganhalli had no exposure to any kind of technology till 2016 when an NGO chipped and decided to rewrite the script. Laptops and tablets were given to students. Training sessions were held twice a month by Smitha Venkatesh, who is part of the NGO. During the summer vacation, the school decided to host an Information and Technology Day where it was decided to interview the president with the aid of cameras and tablets. The queries ranged from water woes, electricity issues, waste management/segregation and the lack of drainage system. Initially, Padmavathi Jayaram was hesitant to speak to students. “I have seen elders coming and questioning me, but when students approached me, I was taken aback. I was highly impressed by the questions. I called up all officials concerned and the aid was sanctioned to get the mess cleared around the school,” she said. The cost, including the works in and around the school, is estimated around Rs 1 crore. The road near the school has been completely concreted. The drainage work too is in progress. The children’s act reminds us of Mahatma Gandhi’s message: be the change that you wish to see in the world.

By Kumaran P

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