Why communication from a ‘locked-in’ child is a miracle we must question

If Jonathan Bryan can communicate we should celebrate, but hard evidence is needed before we change how severely disabled children are cared forThere has been much coverage lately – including inthe Times,the Mirror,the Daily Mail, andtonight ’s CBBC documentary special– of the story of 11-year-old Jonathan Bryan and his remarkable ability to write poetry, keep a regular blog, and communicate with his parents, in spite of his severe and debilitating cerebral palsy. Now Jonathan – who communicates via a spelling board with the help of a facilitator who carefull y watches the movement of his eyes – iscampaigning for other severely disabled children to be taken out of special educational needs classes and taught in regular classes, just as he is.Jonathan has been disabled since birth, when doctors warned that he had suffered such severe brain damage (asJonathan ’s Guardian article last year explained, “the MRI scan of my brain was one of the worst the technician had seen”) that hemay never be able to run, walk or even recognise his parents. With such a bleak prognosis, the progress Jonathan appears to have made is truly remarkable – “nothing short of a miracle”, as his parents describe it.Continue reading...
Source: Guardian Unlimited Science - Category: Science Authors: Tags: Science and scepticism Source Type: news

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CONCLUSIONS: Our results show that a diagnosis of confirmed isolated mild ventriculomegaly was associated with an increased risk of neurodevelopmental disorders compared to the reference population, but the absolute risk was low and there were no cases of intellectual disability or cerebral palsy. This article is protected by copyright. All rights reserved. PMID: 30168217 [PubMed - as supplied by publisher]
Source: The Ultrasound Review of Obstetrics and Gynecology - Category: Radiology Authors: Tags: Ultrasound Obstet Gynecol Source Type: research
CONCLUSIONS: Functional dimensions are poorly represented in pain measures. Our findings may guide the selection of measures for research and clinical needs for comprehensive chronic pain management in children with CP. Implications for Rehabilitation Chronic pain is prevalent among children with cerebral palsy and significantly interfere with functional activities. To effectively manage chronic pain in children with cerebral palsy, measures capturing functional-based information need to be part of routine chronic pain assessment. PMID: 29888977 [PubMed - as supplied by publisher]
Source: Disability and Rehabilitation - Category: Rehabilitation Authors: Tags: Disabil Rehabil Source Type: research
By SAURABH JHA Of my time arguing with doctors, 30 % is spent convincing British doctors that their American counterparts aren’t idiots, 30 % convincing American doctors that British doctors aren’t idiots, and 40 % convincing both that I’m not an idiot. A British doctor once earnestly asked whether American physicians carry credit card reading machines inside their white coats. Myths about the NHS can be equally comical. British doctors don’t prostate every morning in deference to the NHS, like the citizens of Oceania sang to Big Brother in Orwell’s dystopia. Nor, in their daily rounds, do the...
Source: The Health Care Blog - Category: Consumer Health News Authors: Tags: OP-ED Uncategorized AlfieEvans Source Type: blogs
We reported a surge in the use of augmented reality in healthcare at the end of 2016, with the trend continuing in 2017. Notably, Microsoft’s HoloLens was successfully used for spinal surgery applications by a surgical navigation company named ...
Source: Medgadget - Category: Medical Devices Authors: Tags: Exclusive Source Type: blogs
t E Abstract PURPOSE: To examine test-retest reliability and construct validity of the Scandinavian version of the caregiver priorities and child health index of life with disabilities (CPCHILD) questionnaire for children with cerebral palsy (CP). METHODS: Families were recruited in Sweden and Norway and stratified according to the gross motor function classification system levels I-V for children born 2000-2011, mean age 7.9 (SD 3.2). Construct validity based on the first questionnaire (n = 106) was evaluated for known groups, using linear regression analysis. Intraclass correlation coefficient...
Source: Disability and Rehabilitation - Category: Rehabilitation Authors: Tags: Disabil Rehabil Source Type: research
This work studies the feasibility of using mental attention to access a computer. Brain activity was measured with an electrode placed at the Fp1 position and the reference on the left ear; seven normally developed people and three subjects with cerebral palsy (CP) took part in the experimentation. They were asked to keep their attention high and low for as long as possible during several trials. We recorded attention levels and power bands conveyed by the sensor, but only the first was used for feedback purposes. All of the information was statistically analyzed to find the most significant parameters and a classifier bas...
Source: Sensors - Category: Biotechnology Authors: Tags: Article Source Type: research
With the proposed changes to the Affordable Care Act (ACA), 20 million Americans are at risk of losing their health care coverage. A survey, conducted by Brunswick Partners, found that “75 percent of Americans agree that the proposed changes to Medicaid in the AHCA are a bad idea. And that we should not allow 14 million Americans to become uninsured even if there is a potential to reduce Medicaid spending. These results are significant because they find majorities of Americans identifying as conservatives (55 percent), moderates (82 percent) and liberals (90 percent) are opposed to the AHCA’s Medicaid pro...
Source: Healthy Living - The Huffington Post - Category: Consumer Health News Source Type: news
The question is not whether disruptive technologies will transform the healthcare job market, but rather how and when will it happen. Healthcare navigators, augmented/virtual reality operation planners and nanomedicine engineers in the second part of my article series about future jobs in healthcare. As I am certain that the huge waves of technological change transform the medical professional palette; based on the current and prospective trends in digital health technologies I envisioned what potential new professions could appear in our lives. Don’t miss the first part of the list! If you have an idea about another...
Source: The Medical Futurist - Category: Information Technology Authors: Tags: Future of Medicine artificial intelligence augmented reality brain-computer interface cyborg gamification gc4 Health Innovation nanotechnology Personalized medicine psychology robotics virtual reality Source Type: blogs
Conclusion Managing pain in young people with severe musculoskeletal and cognitive impairment presents a huge challenge to carers and professionals. The PPP may represent a useful adjunct in those young people with severe communication difficulties.
Source: Research in Developmental Disabilities - Category: Disability Source Type: research
ConclusionsPlanned VBB confers no additional risks for child health, development, or educational achievement compared to planned cesarean section.This article is protected by copyright. All rights reserved.
Source: Acta Obstetricia et Gynecologica Scandinavica - Category: OBGYN Authors: Tags: Original Research Article Source Type: research
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