Cerebrale parese: Wat kan je verwachten
Het leven met cerebrale parese
Wat exact is cerebrale parese?
Cerebrale parese, hersenverlamming, diplegia spastica infantilis of kortweg CP is een hersenletsel dat op jonge leeftijd rond de geboorte ontstaat en is bij kinderen de meest voorkomende oorzaak van bewegingsstoornissen. Cerebrale parese tast vooral de mobiliteit aan, afhankelijk van de plaats van het letsel. Als lopen of andere bewegingen moeizaam gaan, beïnvloed dit het dagelijks leven binnen je gezin. Het is daarom belangrijk om die motorische ontwikkeling zo vroeg mogelijk te ondersteunen met passende hulpmiddelen en samen het dagelijks leven met CP onder de knie te krijgen.
Lees hier hoe cerebrale parese uw kind kan beïnvloeden en hoe u de bewegingen van uw kind gericht kunt ondersteunen.
Wat zijn de oorzaken van cerebrale parese?
Het blijft moeilijk voor artsen om de exacte oorzaak te achterhalen. Het is zelfs vaak niet mogelijk om de oorzaak of risicofactoren van het vroege hersenletsel vast te stellen. Artsen onderzoeken ook of meerdere factoren betrokken kunnen zijn bij het ontstaan van cerebrale parese.
Het is moeilijk vast te stellen, maar dit is wat we wél weten:
The known causes of cerebral palsy in children are very diverse. Doctors usually classify the causes according to the time at which children acquire the brain injury:
More than 50 percent are affected before birth (prenatal) or during pregnancy as a result of infection or lack of oxygen, for example when a blood clot (thrombosis) forms in a blood vessel in the brain and obstructs blood flow.
During birth (perinatal): From lack of oxygen at birth, for example.
Less commonly after birth (postnatal) as a result of infection such as meningitis or kernicterus, or overlooked rhesus incompatibility.
Artsen vinden steeds vaker genetische oorzaken van cerebrale parese en spreken van "de-novo" mutaties. Dit zijn chromosoomafwijkingen die kunnen worden overgeërfd, waardoor broers en zussen vaak een verhoogd risico op CP hebben. Daarnaast zijn er een aantal andere factoren die het risico op cerebrale parese bij kinderen kunnen verhogen. Enkele van deze factoren zijn:
Meervoudige zwangerschappen
Maternale obesitas tijdens de zwangerschap
Infectieziekten zoals toxoplasmose of rode hond, of ziekten veroorzaakt door cytomegalovirus of herpes simplex virus voor of na de geboorte.
Andere oorzaken van hersenverlamming zijn:
Vroeggeboorte: Kinderen die vóór 28 weken worden geboren, hebben een verhoogde kans op CP
Complicaties bij de geboorte
Het geboortegewicht dat te hoog of te laag is
Hoe beïnvloedt cerebrale parese de ontwikkeling van mijn kind?
Bij kinderen tast cerebrale parese meestal de motoriek of mobiliteit aan. Daarnaast zijn er andere begeleidende symptomen zoals pijn of cognitieve stoornissen; sommige kinderen kunnen moeite hebben met praten of lachen. De symptomen hangen af van het specifieke gebied van de hersenen dat is aangetast, dus niet elk kind zal dezelfde symptomen ervaren en in dezelfde ernst.
De volgende tekenen van cerebrale parese komen alleen of in combinatie voor:
Based on the individual symptoms, doctors can distinguish between different types or classifications of cerebral palsy. The following overview shows the form of cerebral palsy behind the medical terms:
Understanding Infantile Cerebral Palsy
Infantile cerebral palsy (ICP) typically presents as muscle stiffness (spasticity) and movement disorders. It results from brain injuries occurring before, during, or shortly after birth due to factors like oxygen deprivation, infections, or complications during delivery.
What is cerebral palsy?
Cerebral palsy (CP) is also known as infantile cerebral palsy (ICP) and is defined as an injury to the brain that occurs before, during or after birth up to about two years of age due to a variety of causes. It is usually accompanied by a number of movement and postural dysfunctions, which often limit mobility. In addition to these motor dysfunctions, other health impairments may occur, such as disorders that may affect vision or hearing, communication or behavior.
Types & Symptoms.
Spastic CP (75% of cases) – Stiff muscles, exaggerated reflexes.
Hemiplegia (32%) – One side of the body is affected, with the arm more impacted than the leg.
Diplegia (40%) – Both legs are more affected than the arms.
Tetraplegia (2%) – All limbs are impacted, often with significant developmental delays.
Bilateral Hemiplegia & Triplegia – Varying paralysis affecting multiple limbs.
Common complications include stiff joints, difficulty in sitting or walking, speech delays, and posture abnormalities.
What does the GMFCS level say about my child's mobility?
Based on the results of an examination of motor skills and mobility disorders of the affected child in everyday life, doctors can diagnose the level of severity of cerebral palsy. The “Gross Motor Function Classification System” (GMFCS) is often used for this purpose – not only by doctors but also by members of other professional groups, such as physiotherapists and occupational therapists. In many cases, you as parents are actively involved in this process: Questionnaires are used to include your perspective, which makes it easier to identify everyday problems and observations.
The GMFCS consists of five levels or stages, into which mildly to severely affected children with cerebral palsy can be classified. Determining the GMFCS level is about recording your child's current level of mobility – in other words, which movements are possible for your child in everyday life and where he or she encounters obstacles. Each level refers to the movements that are possible. Since the ability to move depends on the age of your child, the GMFCS also distinguishes between different age levels (from 0–2, 2–4, 4–6, 6–12 and 12–18 years). Below you can find a general summary across all ages.
GMFCS 1
Your child can move around independently (with an orthosis, such as an arm or leg splint). Mobility is hardly restricted, and depending on age, activities such as walking, climbing stairs, running and hopping are possible for children with cerebral palsy. Doing sports is also possible later in childhood (6–12 years). At this age, speed, coordination or balance restrictions may become apparent.
Verbeteren van de mobiliteit van kinderen met cerebrale parese
In de eerste plaats hangt de behandeling van cerebrale parese af van het soort symptomen en hoe deze het dagelijks leven beïnvloeden. Het doel van de therapie is het verbeteren van de motorische vaardigheden en de cognitieve ontwikkeling van uw kind. Het doel is ervoor te zorgen dat uw kind rechtop staat, zodat zijn of haar verdere ontwikkeling kan worden bevorderd. Daarnaast wordt tijdens regelmatige afspraken bijgehouden hoe mobiel uw kind is en hoe het zich ontwikkelt om de zelfstandigheid zo goed mogelijk te ondersteunen. Preventieve maatregelen spelen ook een belangrijke rol om verkorting van spieren, banden of pezen en contracturen te voorkomen, evenals verkeerde standen.
Voor bewegingstherapie wordt uw kind voornamelijk verzorgd door fysiotherapeuten en ergotherapeuten. Ook logopedisten en orthopedisten maken deel uit van het behandelteam om ondersteuning te bieden.
What does cerebral palsy mean for your child's future mobility?
Many parents of children with cerebral palsy are uncertain about their child's future. Questions about how the physical impairments will affect development and therefore the prospect of an independent and active life are often the primary focus.
Although cerebral palsy cannot be cured and remains permanent, maintaining and improving mobility are the goals of treatment. Specific support can often improve mobility up to the age of seven. More than half of the children with cerebral palsy are able to walk independently.
Your child’s independence.
In addition, the clinical presentation of cerebral palsy varies widely depending on the extent of the injury to your child’s brain. As a result, some children are only very slightly limited, and an independent life on their own is indeed possible. If cerebral palsy is severe, it is possible that those affected will be dependent on support for the rest of their lives; however, even in this case, there are many possibilities and mobility aids to promote and shape your child’s independence and participation.
If no other serious accompanying diseases occur, cerebral palsy does not affect life expectancy.
Navigating Adolescence with CP.
Lot’s of things are changing. Including how you move!
Your teen years are a time of constant change. To your body. To what interests you and what’s important to you. You’re experiencing new feelings, looking for new kinds of friends, and starting a new part of your life.
But that can be tough when you have CP. CP can have a big impact on every part of your body, and especially on your mobility (how your body moves). Being able to move freely is more important than ever when you want to go new places, try new hobbies, and do lots more on your own.
If you’re a teen with CP, this page can help. You’ll learn a bit about what to expect at your age, and get some advice and inspiration from a real expert in what you’re going through.
Teenage years bring physical, emotional, and social challenges. For those with CP, mobility issues can affect independence, self-confidence, and participation in activities.
Key Challenges & Adaptations
Increased Spasticity & Joint Stiffness
– Growth spurts may worsen muscle tightness.
Gait Abnormalities
– Walking patterns may change, requiring updated orthotics or mobility aids.
Pain & Fatigue
– Overuse of muscles can lead to chronic pain and exhaustion.
Social Inclusion
– Teens with CP may feel different but can benefit from peer support and self-advocacy.
Maintaining Mobility & Independence
Physical & Occupational Therapy
– Adjusting treatments to accommodate growth and new physical challenges.
Assistive Devices
– Custom wheelchairs, braces, and adaptive technology for greater independence.
Mental Health Support
– Addressing self-esteem, anxiety, and social concerns through counseling and peer groups.
Encouraging independence and confidence is key to helping teens transition into adulthood successfully.
Find out what to expect — from a teen just like you!
Grownups and doctors have a lot of the answers you need when you have CP. But while they want what’s best for you, sometimes it just helps to hear it from someone your age. Someone who’s going through the same experiences and changes as you.
So to share what it’s like being a teen with CP, we asked a real expert: a teen with CP. Let’s meet her!
Dit is Moya-May!
Moya-May is 14 jaar oud en komt uit Dublin in Ierland. Ze houdt van muziek, theater en poëzie schrijven. Het liefst maakt ze mensen aan het lachen.
Haar aandoening heeft een grote impact op hoe haar lichaam beweegt, net als bij veel kinderen met CP. Laten we eens kennismaken!
How to take on life’s new challenges with CP.
Moya-May has a real passion for helping others with disabilities like her. She loves to share what she’s learned about growing up with her condition, so we asked her for some real-life advice in this special video series. Keep scrolling to watch them all!
Being a teen with CP: Learning as you grow.
Being a teen can be tough for anyone. But it’s even more challenging when you’re facing a disability like CP. You want to do more on your own. And you want to feel accepted as you are.
In this video, Moya-May talks about how important that is for her too. CP doesn’t have to make you feel different, she says. It’s okay to be who you are, and to share how you’re feeling as your body changes and grows.
What to expect and how to get ready.
Everyone’s teen years are different, but there are still a lot of things that just about everyone goes through. Like wanting to know that people love and understand you.
Moya-May says that starts with being kind and patient when people ask questions about you and your CP. She loves to share how things are for her. It helps everyone understand, accept, and care for each other.
Adulthood: Long-Term Management.
While Cerebral Palsy (CP) is a non-progressive condition, its symptoms can evolve and present new challenges in adulthood due to aging, lifestyle factors, and the long-term impact of the condition on the body. Below are the most common symptoms experienced by adults with CP:
1. Motor and Mobility Issues:
Increased Muscle Stiffness and Spasticity: Worsening tightness in muscles over time. Muscle tone imbalances may lead to contractures (permanent tightening of muscles) and reduced flexibility.
Reduced Mobility: Difficulty walking or maintaining balance, increased reliance on mobility aids.
Joint and Muscle Pain: Often caused by abnormal posture, overuse, or arthritis.
Fatigue: Increased energy expenditure for routine activities due to inefficient movement patterns.
Muscle Weakness: Gradual weakening of muscles, impacting daily functions.
2. Postural Changes:
Joint Deformities: Development of contractures or scoliosis.
Poor Posture: Difficulty maintaining proper alignment while sitting or standing.
3. Speech and Swallowing Problems:
Dysarthria: Slurred or slow speech patterns.
Swallowing Difficulties (Dysphagia): Increased risk of choking or aspiration.
4. Chronic Pain:
Pain in the muscles, joints, and nerves, often due to years of abnormal muscle use and misalignment.
5. Cognitive and Mental Health Challenges:
Cognitive Decline: Some adults may experience memory or concentration difficulties.
Mental Health Concerns: Higher risk of depression, anxiety, and emotional distress.
Social Isolation: Challenges in social integration and maintaining relationships.
6. Secondary Health Issues:
Arthritis: Accelerated joint wear and tear.
Osteoporosis: Increased risk of bone fractures.
Incontinence: Bladder or bowel control issues.
Seizures: Some adults may continue to experience epileptic episodes.
7. Fatigue and Reduced Endurance & Post-Impairment Syndrome:
Daily activities may become increasingly exhausting due to the extra effort required for movement and posture control.
Post-impairment syndrome is a common condition that occurs when you max out your body's energy repeatedly. If you have CP, you may use all your energy doing certain everyday tasks, such as climbing small flights of stairs or sweeping the floor.
8. Premature Aging:
Adults with CP may experience physical aging earlier than the general population due to the strain on their muscles and joints over time.
The Future with CP
Although CP is lifelong, many individuals achieve independence and lead fulfilling lives with the right support. Early interventions, adaptive strategies, and a strong support network can help people with CP thrive at every stage of life.
Treatment Options for Cerebral Palsy.
While there is no cure, various treatments can help manage symptoms and improve quality of life. These include physiotherapy, occupational therapy, speech therapy, medications, assistive devices, and, in some cases, surgery. Early intervention and a personalised treatment plan are key to addressing the unique needs of each individual. Explore our site to learn more about CP, available treatment options, and resources for support and care.
Where to find support.
Your doctor is your first point of contact. Later, allied health professionals such as Physiotherapists, Orthotists, Occupational Therapists, and Speech and Language Therapists will be available to assist you if you need advice.
In addition to discussing cerebral palsy within your own family and circle of friends, networking with others in a similar situation can also be helpful.