Welcome
Start exploring here! We hope this will be a useful resource to help you find the information you need about cerebral palsy and other childhood-onset disabilities. We want to help you to find answers to your questions – so please let us know what else you would like us to cover. Here we are presenting videos, summaries, research information and other resources.
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Ways we can help
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Family-friendly Books
Discover our collection of family-friendly books featuring accessible, research-based insights. These titles include the perspectives of families and individuals with lived experience, offering valuable guidance while supporting parents on their journey.
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Free Chapters
We have selected a range of chapters from our books, offering helpful insights and practical tips. Our chapters summaries highlight key points. View the full chapter to explore each topic in more depth.
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The Knowledge Bank
Explore the answers to your questions here. Find out more about conditions, treatments, interventions, and all aspects of care. Follow signposts to find more in-depth, evidence-based information from Mac Keith Press content, as well as other great sources of knowledge.
4
Plain Language Summaries
Plain language summaries are an effective way of communicating scientific research to a wider audience. By presenting the key findings and significance of a study in easy-to-understand language, the content becomes more accessible to more people. Here we present summaries of papers published in Developmental Medicine & Child Neurology (DMCN).
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Helpful Videos
Here you will find a collection of short videos from authors and editors summarising their work. They cover Developmental Medicine & Child Neurology (DMCN) articles, Mac Keith Press books and e-learning. The aim of the videos is to help viewers get a clear understanding of why the research is important, how it was carried out, and real-world implications.
Gillette Children’s Healthcare Series
The goal of the Gillette Children’s Healthcare Series is to empower families through a greater understanding of their condition and therefore help optimize outcomes for children, adolescents and adults living with these childhood-acquired and largely lifelong conditions.
Scoliosis: Congenital, Neuromuscular, Syndromic and other Nonidiopathic Types
“I highly recommend this impactful book for families and professionals working in the field of scoliosis.”
Ann Marie Sutton, Parent of daughter with scoliosis, US
Click on ‘Buy Now’ to find out more!
Epilepsy
“Finally! A book that truly helps families understand epilepsy. As a mother of a special needs child with epilepsy, I found Epilepsy to be an invaluable resource. This book skillfully combines medical insights with heartfelt stories, addressing the real-life challenges families like ours face every day. … I wish I had this book at the beginning of my journey. It’s a must-read for any family navigating life with epilepsy.”
Colleen Peterson, parent of son with Wolf-Hirshhorn and Lennox-Gastaut syndromes, USA
Click on ‘Buy Now’ to find out more!
Spastic Diplegia
“This is an indispensable guidebook for navigating spastic diplegia, as it is written for families with the condition. It imparts a deep understanding of the medical science and treatment pathways, supported by comprehensive evidence-based references and information resources. The author’s generous sharing of her and her son’s journey, and those of many others, provides valuable sign-posting, hope, and inspiration for the reader.”
Jean and John Glynn, parents of a son with spastic diplegia, Ireland
Click on ‘Buy Now’ to find out more!
Spastic Hemiplegia
“As someone with right spastic hemiplegia, I was amazed by how much of the information was relevant to my memories of childhood therapy appointments and doctor visits. I deeply enjoyed reading the testimonies of those with CP, and I felt recognized inside their stories. From small things like official medical terminology to detailed explanations on why I was receiving certain treatments as a child, this book helped me not only recontextualize my own experiences but also prepared me to be a better medical advocate for myself moving into adulthood.”
Emmalynne Shumard, Student; Adult with spastic hemiplegia, US
Click on ‘Buy Now’ to find out more!
Spastic Quadriplegia
“This book presents clear and concise explanations and eliminates the confusion caused by misinformation online. It has helped me realize that we are not alone; there are other families just like ours experiencing the same highs and lows, joys and sorrows. It will provide comfort and hope to families striving to adjust to a new and oftentimes difficult diagnosis.”
Kristen Stier, Mother of a young adult with spastic quadriplegia, US
Click on ‘Buy Now’ to find out more!
Craniosynostosis
“This is an excellent and informative book that is both clear and factual. It serves as a valuable resource for families, providing them with essential knowledge about craniosynostosis and empowering them to engage confidently with medical and health professionals. The personal stories included offer hope and reassurance, reminding families that they are not alone in their journey. This is the book I wish I had when my son was diagnosed with sagittal craniosynostosis in 2019.”
Elaine L. Kinsella, Parent; Chartered Psychologist and Associate Professor in Psychology, University of Limerick, Ireland
Click on ‘Buy Now’ to find out more!
Idiopathic Scoliosis
“This book is great for anyone on this journey! Our daughter was diagnosed with juvenile idiopathic scoliosis right before she started kindergarten, and we were so worried and overwhelmed, and had so many questions. We wish we had this book during that time as it answers so many questions. We still have many questions and this book helps us pave a path today and for the future.”
Amber Marlatt, Parent of daughter with juvenile idiopathic scoliosis, US
Click on ‘Buy Now’ to find out more!
Free chapter downloads
Feeding and Nutritional Management Strategies
Nutrition and Neurodisability highlights managing feeding and nutrition in children with neurological impairments. Chapter 9 highlights how a multidisciplinary team approach can improve feeding safety and efficiency, addressing issues like dysphagia, poor nutrition, and gastrointestinal problems. Interventions include oral nutrition support, tube feeding, and caregiver training.
Personal experiences from a young person with visual impairment, Holly Tuke
This chapter is a personal account by Holly Tuke, a woman with retinopathy of prematurity, which caused blindness. Despite challenges with accessibility and independence, Holly excelled academically with support and assistive technology. Now a university graduate, she works in the charity sector and runs a successful blog, advocating for disability awareness.
Cerebral Palsy: Through the Eyes of Parents
Parents raising children with complex cerebral palsy (CP) face emotional, practical, and social challenges, including balancing caregiving with personal needs. Support from clinicians, fostering the child’s independence, and improving quality of life through recreational activities are essential. Long-term care planning and focusing on the child’s interests are also important.
Life with and for a Person with Down Syndrome
Families of children diagnosed with Down syndrome often face concerns about health, development, and support. It’s essential to deliver the diagnosis with care and provide accurate, up-to-date information. Early health assessments, addressing feeding challenges, and fostering development are key to helping children thrive, supported by love, encouragement, and healthcare guidance.
What is Cerebral Palsy?
‘Cerebral palsy (CP) describes a group of permanent disorders of the development
of movement and posture, causing activity limitation, that are attributed
to non-progressive disturbances that occurred in the developing fetal or infant
brain. The motor disorders of cerebral palsy are often accompanied by disturbances
of sensation, perception, cognition, communication, and behaviour,
by epilepsy, and by secondary musculoskeletal problems.’ This is the official (2007) definition – read the full chapter to find out much more.
How to Promote a Physically Active Lifestyle Across the Lifespan
The Knowledge Bank
Explore the answers to your questions here. Find out more about conditions, treatments, interventions, and all aspects of care. Follow signposts to find more in-depth, evidence-based information from Mac Keith Press content, as well as other great sources of knowledge.
What are the different types of epileptic seizures?
The different types of seizures are categorized based on where they begin in the brain and how they affect consciousness and movement.
What are the different types of epileptic seizures?
This answer is adapted from section 2.3 of the Gillette Children’s Healthcare Series book on Epilepsy, understanding and managing the condition: a practical guide for families.
A seizure is first classified based on where it begins in the brain, termed the “seizure onset zone”.
- Focal onset seizures (also called focal seizures) begin in one area of the brain.
- Generalized onset seizures involve both sides of the brain from the start.
- Unknown onset seizure: A seizure with an unclear starting location in the brain. The seizure is either focal onset or generalized onset, but the exact onset zone cannot be determined. Seizures classified as unknown may be later classified as focal onset or generalized onset if more testing identifies the onset zone.
Some seizures may start as focal and then spread to involve both sides of the brain
.The second classification is based on the level of awareness during a seizure. The level of awareness is the individual’s state of consciousness during a seizure and includes their “knowledge of self or environment.”
- Aware: The individual does not experience a loss of consciousness and is aware that a seizure is happening. They may even be able to carry on a conversation or complete a task during a seizure. They are also likely to recall the events during a seizure after it ends.
- Impaired awareness: The individual may appear confused, is not aware a seizure is occurring, may not be able to respond, or may experience a loss of consciousness. After the seizure ends, the individual will typically not be able to fully recall the event.
Focal onset seizures are either aware or impaired awareness seizures. However, all generalized onset seizures are presumed to have impaired awareness.
The third classification is based on the signs and symptoms of the seizure—what the seizure “looks” like, or how the individual feels or acts during the seizure. These are known as motor (movement) signs and nonmotor (without movement) signs and symptoms:
Motor signs are uncontrolled physical movements experienced by the individual during the seizure that can be seen by others observing the individual. Nonmotor signs and symptoms are what the individual who is seizing experiences. These may be observed by others if they include a lack of movement, emotional outbursts, or a change in vital signs.
What happens in the brain during an epileptic seizure?
During a seizure, there is uncontrolled, abnormal electrical activity in the brain that originates in networks of multiple neurons, not just a single neuron. This abnormal activity disrupts the brain’s normal ability to regulate signals, leading to sudden, excessive, and synchronous firing of neurons.
What happens in the brain during an epileptic seizure?
This answer is adapted from chapter 3 of the the Gillette Children’s Healthcare Series book on Epilepsy, understanding and managing the condition: a practical guide for families.
Neurons are the smallest unit of the nervous system, and there are billions of them in the brain and spinal cord. They are electrically excitable cells and carry information (signals) between the central nervous system and the rest of the body as electrical impulses through a web-like structure from neuron to neuron, or from neurons to other cells in the body.
During a seizure, there is uncontrolled, abnormal electrical activity in the brain that originates in networks of multiple neurons, not just a single neuron. This abnormal activity disrupts the brain’s normal ability to regulate signals, leading to sudden, excessive, and synchronous firing of neurons. The electrical activity may manifest as changes in movement, sensation, awareness, or behavior.
Seizures occur when the seizure threshold—the level of electrical activity required to trigger a seizure—is reached. Neurons communicate via synapses, and during a seizure, this communication becomes disrupted, with some neurons being overstimulated (excited) and others inhibited, leading to the chaotic brain activity seen during a seizure.
The abnormal electrical patterns can be detected using an EEG, which may show epileptiform discharges—distinct waveform patterns associated with epileptic activity. These discharges may occur during a seizure (ictal) or between seizures (interictal). The underlying cause of the abnormal activity may be related to genetic, structural, or metabolic factors, but the result is a breakdown in typical brain function during the event.
What happens during an EEG test?
During an EEG test, electrodes are placed on the scalp to measure and record the brain’s electrical activity, generating a visual graph of brain waves. The test is used to detect abnormal electrical patterns that may indicate epilepsy or other neurological conditions.
What happens during an EEG test?
This answer is adapted from chapter 4 of the Gillette Children’s Healthcare Series book on Epilepsy, understanding and managing the condition: a practical guide for families. Purchase the book here.
During an EEG test, electrodes are placed on the scalp to measure and record the brain’s electrical activity, generating a visual graph of brain waves. The test is used to detect abnormal electrical patterns that may indicate epilepsy or other neurological conditions.
The EEG may be performed with simultaneous video recording (called video EEG or VEEG), which allows healthcare providers to observe the individual’s behavior and movements while recording brain activity. This helps distinguish between seizures and events that resemble seizures but are not caused by abnormal electrical discharges.
The medical professional evaluates the brain wave patterns, as well as the individual’s level of awareness, motor signs, and nonmotor symptoms during the recording.
EEG records only live events, however, so it is possible that no events will occur during the EEG. If certain triggers are identified for the individual, those can be used to try to induce a seizure during EEG. Watching flashing lights, hyperventilating (breathing rapidly), closing eyes, opening eyes, and other actions are often performed during EEG to try and trigger an event. Medical professionals may also request that the individual be sleep deprived since lack of sleep may be a trigger for seizures. Some seizures occur more often with sleep, so an overnight stay in the hospital may help capture events related to sleep. EEG can be done in either outpatient or inpatient settings. Typically, an outpatient EEG test lasts from 20 minutes to several hours, and an inpatient
EEG test lasts from one to several days (or weeks in rare instances).
What are the causes of epilepsy?
The causes of epilepsy include structural, genetic, infectious, metabolic, and immune factors. Or, as in approximately 50 percent of epilepsy cases worldwide the cause can remain unknown. Determining the cause, when possible, helps guide management and can provide clues to long-term prognosis.
What are the causes of epilepsy?
This answer is adapted from chapter 6 of the Gillette Children’s Healthcare Series book on Epilepsy, understanding and managing the condition: a practical guide for families. Purchase the book here.
The causes of epilepsy include structural, genetic, infectious, metabolic, and immune factors. Or, as in approximately 50 percent of epilepsy cases worldwide the cause can remain unknown. Determining the cause, when possible, helps guide management and can provide clues to long-term prognosis.
Structural epilepsy results from a distinct brain abnormality, such as a lesion or tumor, and often presents with focal onset seizures.
Genetic epilepsy is caused by or closely associated with changes in genes, which may be inherited or occur as new mutations (de novo). It is often suspected when epilepsy begins very early in life and can present with any seizure type.
Infectious causes may include conditions like meningitis or encephalitis, while metabolic causes can involve imbalances in blood sugar, electrolytes, or other body chemicals.
Immune-related causes involve autoimmune processes that affect the brain and may trigger seizures.
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Plain Language Summaries
Plain language summaries are an effective way of communicating scientific research to a wider audience. By presenting the key findings and significance of a study in easy-to-understand language, the content becomes more accessible to individuals with disabilities, parents, caregivers, and others. Here we present summaries of papers published in Developmental Medicine & Child Neurology (DMCN).
Sleep problems in children with cerebral palsy and their parents
The study found that sleep problems are common in children with cerebral palsy (CP) aged 0 to 11 years. The most common problems reported by parents were: daytime fatigue, difficulty falling asleep, and early-morning waking. Children with CP were also more likely to have sleep problems than typically developing children, and children with CP who cannot walk were more severely affected by sleep problems than children with CP who can walk.
Quality of life in caregivers of a child with a developmental and epileptic encephalopathy
Developmental and epileptic encephalopathies (DEEs) are severe forms of epilepsy that usually start during infancy. There are many types of DEE, making each specific diagnosis extremely rare. Children with a DEE typically have seizures that are hard to treat and that impact their development and learning. Other symptoms may include feeding difficulties, movement problems, and features on the autism spectrum.
Experiences of children and adolescents with attention-deficit/hyperactivity disorder taking methylphenidate
Understanding the experiences of adolescents diagnosed with attention-deficit/hyperactivity disorder (ADHD) and taking ritalin and other stimulant medication is crucial in order to improve medical counselling to them. A central theme in these experiences is adolescents’ self-esteem and their sense of control on their body and life.
Epilepsy and cannabis: so near, yet so far
In 2018, the UK government changed the law so that cannabis-based medicines could legally be prescribed. Since then, very few prescriptions have been issued. Why is this?
Some children with epilepsy have seizures that respond very poorly to standard medications and their quality of life suffers. CBMPs may have an important role in helping those children. There are many forms of CBMPs and one medicine, cannabidiol, now has a license for some rare types of epilepsy.
Child-led goal setting and evaluation tools for children with a disability: A scoping review
Children with disabilities and delays benefit from being involved in setting and evaluating intervention goals. When goals hold personal value for children, they can feel more motivated to work towards them, which can improve their intervention outcomes. However, in current practice, parents or therapists are most often the primary decision-makers about intervention priorities. Which practices support allied health professionals to involve children with disabilities in goal setting and evaluation?
‘Power in Mobility’: Parent and therapist perspectives of the experiences of children learning to use powered mobility
This study focuses on the importance of mobility for children with mobility impairments and the impact of using powered mobility devices on their development and participation. To gather data, interviews with parents and therapists of children who had recently started using powered mobility devices were analyzed to identify common themes and gain insights into the experiences and perceptions of parents and therapists.
Survival of individuals with cerebral palsy: A Victorian longitudinal cohort study spanning four decades
The aim of this research was to provide an updated description of the death rates, trends in death rates over time, and predictors of deaths of persons with cerebral palsy (CP) who were born in the Australian state of Victoria between 1970 and 2012. The authors found that improvements in survival for those born in the 2000s was likely mainly related to a proportional reduction in complex CP, a finding that is supported by other studies.
Letting Tourette’s be: The importance of understanding lived experience in research and the clinic
Tourette syndrome is a neurodevelopmental condition characterized by involuntary movements and sounds that are known as tics. Historically, the focus of biomedical and clinical research and treatment has been on reducing these tics, viewing them primarily as symptoms of a neurological disorder. However, in this article we argue that this approach is too narrow as it does not adequately consider the lived experiences of Tourettic individuals.
UK research priority setting for childhood neurological conditions
In this project, the researchers wanted to find the most important unanswered questions about treatments, or therapies for children and young people with childhood neurological conditions such as epilepsies, cerebral palsy, and many rare conditions. This is called a Priority Setting Partnership. Priority Setting Partnerships aim to help patients, carers, and health professionals work together to agree research priorities. After two rounds of surveys, the top 10 priorities were identified.
Environment-based approaches to improve participation of young people with physical disabilities during COVID-19
Personalized interventions to enhance participation in meaningful activities in everyday environments are recommended for young people with physical disabilities. Pathways and Resources for Engagement and Participation (PREP) is one such intervention, focusing on changing the environment (e.g. inaccessibility, limited social support, lack of availability of programs) and coaching young people/parents and community members on removing environmental barriers.
Magic-themed motor training for daily bimanual task performance in children with unilateral spastic cerebral palsy: A systematic review and meta-analysis
Unilateral spastic cerebral palsy (CP) is a disorder of motor and postural development caused by early brain injury. This impairment poses significant challenges for daily physical tasks such as getting dressed, taking a shower, cutting food, etc. The authors of this study undertook a systematic literature review to discover what research has taken place on the effectiveness of magic-themed interventions in improving task performance in both hands in children with unilateral spastic CP.
Helpful videos
Here you will find a collection of short videos from authors and editors summarising their work. They cover Developmental Medicine & Child Neurology (DMCN) articles, Mac Keith Press books and e-learning. The aim of the videos is to help viewers get a clear understanding of why the research is important, how it was carried out, and real-world implications.
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