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.
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.
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.
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.
Are there activities my child with epilepsy should avoid?
Certain activities may require precautions, such as swimming (with supervision), driving (only after seizure freedom and medical approval), or operating machinery.
Are there activities my child with epilepsy should avoid?
This answer is adapted from section 10.3 of the Gillette Children’s Healthcare Series book on Epilepsy, understanding and managing the condition: a practical guide for families.
In general, children with epilepsy are encouraged to participate in normal activities, including school, sports, and social events, as long as safety measures are in place. While most activities are safe, some may need to be adjusted based on the individual’s seizure type, frequency, and control.
For example, certain activities may require precautions, such as swimming (with supervision), driving (only after seizure freedom and medical approval), or operating machinery. These decisions are typically made in consultation with a healthcare provider.
Open communication with the child’s medical team is essential to determine what is safe and appropriate.
How can parents help their child with cerebral palsy develop independence?
Parents can support their child’s independence in tasks like dressing or eating by breaking these activities into smaller, achievable steps. Using adaptive tools, offering consistent opportunities to practice, and allowing the child to explore solutions at their own pace helps build confidence and skill without overwhelming them. For more information, please read the extract from chapter 21 of ‘Children and Youth with Complex Cerebral Palsy’. Full chapter available to download.
How can parents help their child with cerebral palsy develop independence?
Extract from Glader and Stephenson, ‘Children and Youth with Complex Cerebral Palsy’, Chapter 21, page 330:
Tips for Parents of Children with Complex CP
- Pay attention to how much intellectual and personal energy you are giving toward finding answers for your child. Be sure to carve out times during the day to simply be with your child, other family members, or spouse without thinking about CP and the challenges your child faces.
- Don’t sacrifice reason and good sense to help your child. New therapies will constantly be presented as the treatment for CP. Before trying a new therapy, make a list of the sacrifices the treatment will require you and your family to make. Weigh the emotional and financial costs and the physical, safety, and unknown risks the treatment will present against the possible benefits for your child. Remember that a treatment without any known risks does not mean it is risk free. Discuss these issues with people you trust and your child’s medical team. Set time commitment limits and financial limits and be aware of your expectations about the treatment.
- Your child will have his or her own developmental timeline. When you compare your child to other same aged peers, you may subliminally approach your child with disappointment and he or she may perceive this as something he or she is doing wrong. Focus on the positive points, the things that are working and the small, incremental steps that lead to putting together larger developmental pieces.
- Assess and honor your child’s physical and cognitive energy limits each day. These may change daily. You know your child best. Don’t be afraid to speak up if you think what is best for your child is different from what the experts advise.
- Be aware of what is driving your approach to your child’s therapy/developmental support program. Be honest with yourself and look out for guilt, fear, and hopelessness that are motivating you to push your child and other family members too much. This may be difficult territory to sort through and balance, but is often part of the emotional journey that is a necessary step to accept the CP diagnosis. Remember, it’s your child who ultimately has to participate in the therapy and integrate all the information that comes from your therapy planning.
- Creating a balanced schedule becomes easier as your child’s developmental picture becomes clearer. Over time, as you and your professional team have had a chance to observe your child, you will have a better understanding of how to focus your time and which therapies and treatments work best for your child. In addition, you child’s clinical team may use the Gross Motor Classification System (GMFCS, see Chapter 1) to help guide decision making around goals and treatments.
- Focus on what your child does well and what they like. Integrate interests with opportunities for development. For instance, perhaps a child likes the water. Swimming is an activity that your child can enjoy while also developing their motor skills.
- Explore respite resources in your area including what is offered by local parent-to-parent offices, churches or other religious centers, and state programming that allows for in-home support for your child. Some US states offer programs through Medicaid/TEFRA/Katie Beckett that allow for parents to have respite hours. Additionally, your area may have medical day care centers which offer out-of home respite programs. Contact your local Health and Human Services Agency for more information.
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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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