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

1

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.

2

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.

3

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).

5

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.

Cover of the book 'Scoliosis: Congenital, Neuromuscular, Syndromic and other Nonidiopathic Types'

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

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 - Cover

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 - Cover

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 - Cover

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 - Cover

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 - Cover

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

Nutrition and Neurodisability - Cover

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.

Children with vision impairment - Cover

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.

Glader Cover

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.

Down Syndrome - Cover

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.

Cerebral Palsy - Rosenbaum and Rosenbloom book front cover

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.

Promoting Physical Activity and Fitness - Cover

How to Promote a Physically Active Lifestyle Across the Lifespan

Promoting physical activity for individuals with childhood-onset disabilities requires motivation, self-efficacy, and social support. Intrinsic motivation and adaptive equipment, like arm-propelled cycles, are crucial for participation. Equitable access to such resources, combined with supportive environments, encourages sustained physical activity, improved well-being, and greater inclusion in society throughout their lives.

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 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.

Read more

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.

Read more

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.

 

How is epilepsy usually treated?

Epilepsy is usually managed with a combination of pharmaceutical, non-pharmaceutical, and other medications or supplements. The primary treatment approach typically begins with antiseizure medications, which are used as monotherapy (one medication) or polytherpay (several medications used in combination)to control seizures.

Read more

How is epilepsy usually treated?

This answer is adapted from chapter 8 of the Gillette Children’s Healthcare Series book on Epilepsy, understanding and managing the condition: a practical guide for families.

The difference in meaning between “management” and “treatment” is subtle. “Management” is the broader term, considering all aspects of an individual’s life, whereas “treatment” is the use of a specific intervention, such as medication or surgery. Management and treatment aim to promote optimal participation in daily life by enhancing activities and minimizing problems with body functions and structure. Varying treatment options are available for epilepsy, but all need to be considered under the broad topic of management, ensuring all aspects of the individual’s life are considered.

Epilepsy is usually managed with a combination of pharmaceutical, non-pharmaceutical, and other medications or supplements. The primary treatment approach typically begins with antiseizure medications, which are used as monotherapy (one medication) or polytherpay (several medications used in combination)to control seizures. These medications are often effective and are the first-line treatment for most people with epilepsy.

If seizures are not controlled with medication, or if the epilepsy is drug-resistant, non-pharmaceutical treatments may be considered. These include:

  • The ketogenic diet, a high-fat, low-carbohydrate diet that has been shown to reduce seizures in some individuals, particularly children.
  • Neuromodulation, such as vagus nerve stimulation (VNS), which uses electrical pulses delivered via a surgically implanted device to help reduce seizure frequency.
  • Epilepsy surgery, which may be an option for people with focal epilepsy and identifiable brain lesions or areas of seizure onset that can be safely removed.

Other medications or supplements may include:

  • Immunotherapies, steroids or adrenocorticotropic hormone therapy which may be prescribed for epilepsy with a specific cause or for particular epilepsy syndromes, either in addition to or instead of antiseizure medications.
  • Vitamins or supplements, such as vitamin B6 or coenzyme Q10, which may help in specific cases.
  • Medical cannabis or cannabidiol (CBD), which has shown benefit in some treatment-resistant forms of epilepsy, such as Dravet syndrome or Lennox-Gastaut syndrome.

Management plans are often individualized and may combine multiple approaches, such as using antiseizure medications alongside the ketogenic diet or neuromodulation. Long-term monitoring is essential to assess treatment effectiveness and adjust therapy as needed.

For more information on treatments including medical cannabis or cannabidiol (CBD), please see the plain language summary of the DMCN paper ‘Epilepsy and cannabis: So near, yet so far’.

What other health problems can occur with epilepsy?

Approximately 70 percent of children with epilepsy have at least one comorbidity. Comorbidities may be present before the epilepsy diagnosis, they may occur with the epilepsy diagnosis, or they may develop later.

Read more

What other health problems can occur with epilepsy?

This answer is adapted from chapter 9 of the Gillette Children’s Healthcare Series book on Epilepsy, understanding and managing the condition: a practical guide for families.

People with epilepsy often experience comorbidities—other health conditions that occur alongside epilepsy. Approximately 70 percent of children with epilepsy have at least one comorbidity. Comorbidities may be present before the epilepsy diagnosis, they may occur with the epilepsy diagnosis, or they may develop later. Comorbidities may exist by chance, or comorbidities may share the same risk factors or causes as epilepsy. Comorbidities can include:

  • Neurological and neurodevelopmental comorbidities. Conditions that affect the nervous system are termed “neurological.” Epilepsy itself is a neurological condition, and other neurological conditions frequently coexist with epilepsy as comorbidities. Since the nervous system affects all areas of the body, the impact of neurological comorbidities is often broad. Neurodevelopmental conditions begin in the developmental periods (infancy, childhood, and adolescence) and interfere with how the brain functions, leading to issues including those that impact cognition, social skills, and emotions. Neurological and neurodevelopmental conditions that may occur alongside epilepsy include cerebral palsy, ADHD, developmental delay, and learning disorders.
  • Physical comorbidities, are conditions that affect the physical functioning of the body. These may include musculoskeletal system disorders, cardiovascular system disorders, autonomic nervous system disorders and obesity.
  • Psychiatric comorbidities, including depression, anxiety, and bipolar disorder, affect mood, thinking, and behavior. They may also be called mental health or behavioral disorders. They are one of the most common comorbid conditions in epilepsy, with psychiatric and behavioral problems reported in 35 to 50 percent of children with epilepsy.

These comorbidities can significantly impact overall health, treatment response, and quality of life. Therefore, a comprehensive approach to epilepsy management includes screening and treating these associated conditions.

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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

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

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

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.

DMCN cover

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

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?

DMCN cover

‘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

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.

DMCN cover

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

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

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

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.

What is Cerebral Palsy and how can we talk meaningfully about it? 

In this podcast, Martin Gough with voice acting from Maeve Gough looks at how we can define Cerebral Palsy and what this means for clinicians and families in the medical sphere. 

Inspired by their recent publication, you can find out more about this topic below:
---------
About the book:
Do we need a paradigm shift in our approach to the assessment and management of the musculoskeletal system in children with cerebral palsy? This book encourages clinicians to reflect on how their thoughts and approaches are shaped by the clinical society. Using new perspectives and expertise, this book will inspire clinicians to rethink conventions about the child with cerebral palsy, consider how they communicate these new concepts to their fellow clinicians, and act to bring about positive changes in the management of children with cerebral palsy.

Readership: 
A critical resource for clinicians and researchers involved in the care of children with cerebral palsy including Neurologists, Physical Therapists, Orthopaedic surgeons and Neurosurgeons, as well as researchers and clinicians in the philosophy of medicine.

Order now - https://bit.ly/32gSMBV
Subscribe to our channel for more: https://bit.ly/2ONCYiC​

___

Listen to all our episodes:
https://bit.ly/2yPFgTC​
___

Mac Keith Press:
We exist to improve the care of disabled children by extending the knowledge and understanding of developmental medicine and paediatric neurology. We publish the journal DMCN and books in related subject areas. These are of interest to researchers, health professionals, clinicians, therapists, parents and all involved in the care of children and young people with neurodevelopmental conditions.

Mac Keith Press - http://www.mackeith.co.uk​
___

Find us on Twitter!
@mackeithpress - https://twitter.com/mackeithpress​

What is Cerebral Palsy and how can we talk meaningfully about it?

In this podcast, Martin Gough with voice acting from Maeve Gough looks at how we can define Cerebral Palsy and what this means for clinicians and families in the medical sphere.

Inspired by their recent publication, you can find out more about this topic below:
---------
About the book:
Do we need a paradigm shift in our approach to the assessment and management of the musculoskeletal system in children with cerebral palsy? This book encourages clinicians to reflect on how their thoughts and approaches are shaped by the clinical society. Using new perspectives and expertise, this book will inspire clinicians to rethink conventions about the child with cerebral palsy, consider how they communicate these new concepts to their fellow clinicians, and act to bring about positive changes in the management of children with cerebral palsy.

Readership:
A critical resource for clinicians and researchers involved in the care of children with cerebral palsy including Neurologists, Physical Therapists, Orthopaedic surgeons and Neurosurgeons, as well as researchers and clinicians in the philosophy of medicine.

Order now - https://bit.ly/32gSMBV
Subscribe to our channel for more: https://bit.ly/2ONCYiC​

___

Listen to all our episodes:
https://bit.ly/2yPFgTC​
___

Mac Keith Press:
We exist to improve the care of disabled children by extending the knowledge and understanding of developmental medicine and paediatric neurology. We publish the journal DMCN and books in related subject areas. These are of interest to researchers, health professionals, clinicians, therapists, parents and all involved in the care of children and young people with neurodevelopmental conditions.

Mac Keith Press - http://www.mackeith.co.uk​
___

Find us on Twitter!
@mackeithpress - https://twitter.com/mackeithpress​

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What is Cerebral Palsy?

DMCNvideos April 14, 2022 1:45 pm

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