Developmental Medicine & Child Neurology (DMCN) has defined the field of paediatric neurology and childhood-onset neurodisability for over 60 years. Published by Mac Keith Press and distributed by Wiley, DMCN disseminates the latest clinical research results globally to enhance the care and improve the lives of disabled children and their families.
Our RU-vid channel broadcasts videos that accompany articles published in DMCN and books published by Mac Keith Press. Please note, the views expressed in the videos are those of the authors and do not necessarily represent the views of Mac Keith Press.
This channel will be of interest to researchers, all health professionals concerned with developmental disability and child neurology, and others involved in the care of children and young people.
Zero comments on this video, does unfortunately demonstrate the lack of importance held by society in the goal of finding a cure for CP. Within the 'CP strategy', the goal of finding a cure appears to be up for debate, while failing to take into account the obvious difficulties faced by those with the condition in all aspects of life. CP causes a daily struggle for sufferers of all functional levels which is non-negotiable. Equally concerning is reference to 'stake-holders', likely in relation to charities, disability organisations and service providers, as well as manufacturers of assistive technology and pharmaceutical interventions with a view to manage or reduce the underlying symptoms of CP. The primary focus should be in finding a cure for CP in the manner of restorative motor and cognitive function to the fullest extent, regardless of the age of the individual so they may be able to live a more full and active life without the burdensome physical, emotional, psychological as well as social struggle of living with the condition, further compounded by poor social attitudes in all age groups, most damaging, being first years of education and social interaction as the defining years of a child's development and wellbeing as well as foundations of their personal identity. One's personal identity in the disability community is often decided for them by others, in relation to the individual being seen both within or outside the disability community; including but not limited to; a.) Different from their peers, b.) A miracle child, c.) Less physically-abled than others, d.) Less deserving of social inclusion than others or only capable of social interaction with those living with CP, e.) Someone who shows great courage or intelligence in spite of their disability, and f.) Someone only worthy of being a representative for the disabled community, simply by the nature of their obvious disability, whether they are that way inclind or not. Such daily difficulties for those affected are non-negotiable. Finding a cure for this life-altering condition should be as important as providing access to clean drinking water, adequate food, education and clothing to those in an under-developed or war-torn country. Living with Cerebral Palsy, like any disability is not a choice. It's a life-sentence, unless it's taken away.
I'm in my early 30s and considering getting married to someone with CP. He's also in his early thirties. I like him but I'm scared and don't know what the future holds. Thank you for studying this.
Thank you very much for this work. It is precious. The systemic approach helps to understand the process of clinical reasoning better. The case reports in your study show a high relevance and benefit for the children and families.
This is a lovely introduction the BCRF and really captures the complexity of therapy in CP. I'm struck by how sophisticated it is in comparison to Novak's READ model which is ridiculously over simplified in addressing the work that we all do.
hello My daughter has AT. She is 16 years old. She has no immune problems. But she does not walk and when she wants to move, her head tilts back against her will. It is difficult to hold her head even when sitting. I heard that you can treat these diseases. I express my deep gratitude to you. Help my daughter Nigar too. Elbrus Neymanov, from Azerbaycan ,Baku
Hi There, happy new years.. my 2 year old son has this same type of mirroring in the hands, I’m trying to learn as much about it as possible and appreciate you guys posting your experiences. My son seems to not always mirror his hands and fingers ..just sometimes, does this get more pronounced as you grow up, have you noticed anything? Many thanks in advance. Apologies for multiple duplicate posts.
I strongly believe that this paper is a kind of healthy reaction to the extreme conclusion reached by the last systematic review, conducted by Iona Novak's group, on the Bobath intervention, which was to de-implement this intervention. The position of the Bobath therapists is important. Science gains from this and, consequently, so do children with cerebral palsy.
I have CP that affects my walking i use to walk with fourarm Crutches but now im 36 i have a lot of pain due to it my doctor treated me with oxycodone/apap for over 4 years this helped Alot with my pain i had some what of a life i was happy again due to not being in crying pain i was able to do my daily routine. Now out of nowhere they are planning on cutting me off of it The one thing that had help me get by in life they want to take it away all of a sudden im so depressed about it i dont want to be back in pain its cruel what there doing it isn't fair and its definitely not fair for my love ones to see me like this
I'm 38 I was born with cerebral palsy but I was struggling with fatigue in my 20s then I was put on depression meds and now I gained weight. I lost mobility and I barely get out of bed now. I'm always fatigued
Hello Abidrahim I also have this condition, I have not looked into treatments for our disorder, but I do not believe there is anything one can do. Perhaps there could be medical surgery to fix the effects, or training to correct for the movements my work also. Though, for me at least, it is not much of a Burdon and I will continue my life as normal.
I have ASD. I did regress at 18 months, I was starting to babble and then I just stopped, and I was delayed in speech development. I did completely catch up with speech though. and was eventually diagnosed with high functioning autism at age 9, after years of doctors trying to work out what was wrong with me. I was given a statement of special educational needs in primary 1, so something was clearly wrong from a young age.
Excellent work, hoping for more primary and longitudinal studies that can help provide definitive answers to dosing, timing and type of supported standing interventions! Great work!
This was great to listen to. We definitely need more research into the learning needs of those of us who have NS. I'm convinced that for many of us there's a complex interaction of Specific Learning Difficulties that result in barriers to learning and underperformance. I have Noonan Syndrome, specific learning difficulties and am a Special Education Consultant, so am absolutely fascinated with how we learn and how we can best support effective access to education. Internationally, we really need to improve our understanding of both the causes of these potential difficulties and what we can do to ensure that we minimise barriers to learning. Thanks so much for all your hard work.
Wait....I have congenital mirror movement (self-diagnosed since no doctors ever could figure it out). Should I check for unilateral cerebral palsy too......? I have complete agenesis of the corpus callosum as well....
Hi! How can I access to the videos from this book? I have adquired this about two years ago but it's time that I can't see the videos 😢( sorry for my English, I'm from Mexico.
This paper is vitally important. ER ENT specialists mistook our son's pain induced dystonic storm for compromised airway due to stridor and intubated. Ventilator acquired pneumonia took him. If they or his carers had known to use his emergency meds.
They r so quick to judge mothers having babies on methadone but not to judge the health care system for putting these drugs out there. Anyone can fall vulnerable to addiction. If anyone should feel like shit it’s the scientist who made this shit and the higher ups for allowing it to be put in our bodies and prescribed. U guys ruined so many lives including mine. Where is the justice for us victims of it.
