A GUIDE TO FIRST DIAGNOSING AND TREATING CEREBRAL PALSY
Finding out your child is at high risk for cerebral palsy (CP) can be a stressful and emotional time. This diagnosis might be something you have suspected from birth, or it might be a complete surprise months after your baby’s birth.
My twins were born three months premature, so we were aware of the risks with disabilities such as cerebral palsy. On our first visit to the Neonatal Intensive Care Unit (NICU), we were told that an infant born prematurely had a high likelihood of survival; however, one in ten would go on to have a disability such as a vision or hearing impairment, intellectual disability, or cerebral palsy.
The day my boys were diagnosed was very emotional. We had the support of the boys’ physiotherapist, who had been part of their early intervention from the start. Despite knowing they would probably be diagnosed, we still felt a range of emotions that day, and I will always remember it.
This was daunting and led me to research cerebral palsy even before my boys started displaying signs and symptoms. Doing research with sources you find easy to use is important. But don’t forget, you should also try and switch off and give yourself a break. Finding this balance took me a while to learn.
The following is important information I’ve learnt along with way that I want to share with other families and support teams, to make the early diagnosis and intervention process much easier for them.
Risk factors for cerebral palsy
What are the typical risk factors for cerebral palsy?
Cerebral palsy is generally caused by damage to the brain. However, growing research indicates genetic abnormalities can also be linked with the development of cerebral palsy. CP is typically caused by brain damage in utero, at birth or shortly after. Prematurity and birth trauma are leading risk factors for CP.
Signs & symptoms
What are the typical signs and symptoms?
Cerebral palsy is considered an ‘umbrella term’, so the signs and symptoms can vary widely. Often the first signs include an infant not meeting milestones, particularly motor milestones such as rolling, sitting, or crawling.
Clenching of a fist(s) might be noticed, or an infant seems to ignore one side of their body. If your child was born prematurely or there was trauma at birth, signs and symptoms of CP may be monitored by allied health or a Paediatrician.
At other times the parent might notice these signs. Intuition is a powerful force in parenting; if you feel something isn’t ‘right’ with your child, don’t hesitate to take them to a GP, Paediatrician or Allied Health practitioner that will listen to your concerns.
Why are there difficulties diagnosing cerebral palsy?
Other childhood disabilities can present similar signs, especially developmental delays and muscle tone abnormalities, particularly genetic disorders. Genetic testing, blood tests for metabolic disorders, and an MRI are often useful in diagnosis.
When can cerebral palsy be diagnosed?
A baby might be flagged as high risk for CP and sometimes diagnosed with developmental delay, a diagnosis is commonly made between one to two years old. In mild cerebral palsy cases, diagnosis may be made later. However, CP can be diagnosed earlier if neurological damage is discovered and followed with an MRI (e.g. preterm labour).
What are the diagnostic tools used to diagnose cerebral palsy? (MRI, GMFM etc.)
When a baby is recognised as having a high risk of developing cerebral palsy (e.g., prematurity, lack of oxygen at birth or stroke). A general movements assessment can be completed from birth until 20 weeks (post-term). The general movements assessment involves the infant lying on their back and taking a video for 3-5 minutes for analysis. Babies have a distinct pattern of general movements until 20 weeks post-term. It has been found that infants at high risk of neurological conditions such as cerebral palsy have abnormal or absent general movements.
Why is it beneficial to get a diagnosis early?
The most important thing is early intervention. When an infant is at high risk for cerebral palsy or begins to delay reaching milestones that could indicate CP, intervention with allied health professionals should start right away. Physiotherapists and Occupational therapists and a review by medical professionals are crucial in early intervention. Early Intervention can be tailored to the infant’s presentation and goals regardless of whether a diagnosis has been made.
Early intervention and treatments
What are some early interventions parents/support workers can access?
Under the NDIS, children younger than six can receive NDIS funding under the Early Childhood Early Intervention (ECEI) program. If a child is identified as high risk for CP or does not meet developmental milestones, funding can be applied without a diagnosis.
Early childhood intervention provides specialised support to children with or without a diagnosis. Early intervention promotes development, well-being, and community access.
Much of the early intervention model focuses on enabling parents and caregivers with the skills, knowledge, and resources to provide experiences, support, and opportunities for the infant or child to participate in family and community life and optimise their development. This can look different for every family and child, and a range of supports and specialists can be involved.
Early intervention focuses on functional skills. Infants and children learn best in natural environments and through everyday experiences with familiar people and contexts; many early intervention therapists will work with the child and family in the home. Therapy will generally be based on goals for the child and family and will identify what supports are required to maximise the child's potential and achieve goals.
Who provides early intervention?
Early intervention is generally provided by allied health professionals, including physiotherapists, speech therapists and occupational therapists. At times the infant or child may be linked to a hospital allied health service or a service such as the Victorian Paediatric Rehabilitation Service in the beginning. From there, families can connect with private therapists in their community. A GP or service like CPSN may assist you.
What secondary conditions parents/support workers may want to screen for? (e.g., vision impairment, hearing impairment)
People with cerebral palsy can experience higher rates of secondary conditions, such as vision or hearing impairments. Hearing screenings are a routine part of infant screening.
Epilepsy is also seen at higher rates in individuals with cerebral palsy, and this is something that is investigated if the child experiences a seizure at any point. In the younger years, reflux can also cause health concerns for a baby or child; the GP or Paediatrician often manages this.
Each child is different, and so, of course, a wide range of secondary health conditions can be found. As a parent or carer, if you are concerned about any signs or symptoms your child is presenting, it is always best to discuss this with the GP, Paediatrician or other health professional providing care to your child.
Resources & support
Where can parents/support workers go for further resources?
Reimagine Australia (previously known as Early Childhood Intervention Australia) has great early intervention resources. The Early Intervention guidelines are a great resource to assist you in understanding how Early childhood professionals are guided in their practice. Many sites provide information about cerebral palsy and its meaning for your child. The CPSN website is a great place to start. I also really like the information and videos on the Cerebral Palsy Foundation website. Finally, Source Kids has many links to relevant services and support.
How can parents/support workers get support?
CPSN provides support to parents, carers, or support workers who want more information or to discuss anything about their child before or after diagnosis. A conversation with Member Service or the Telehealth nurse is a good start.
Support from the child’s medical or multidisciplinary team is always important, so don’t hesitate to reach out to these professionals and ask for further support if you need it.
One of the biggest things I’ve learned as a parent throughout our journey is trusting my instincts and following those instincts. I’ve done this many times through hospital stays, diagnoses and treatment choices. Support and resources are important, and I am grateful for that support. Reaching out to your support networks is a powerful tool. In particular, the CPSN Parents of Children with Cerebral Palsy Support Group is a terrific starting point for newly diagnosed parents, and it’s free to CPSN members.
This piece was written by Amy. Amy is CPSN's Telehealth nurse and has lived experience as a mother of twin boys with cerebral palsy. Amy also hosts the Ask Amy sessions - a webinar series exploring medical topics related to people living with cerebral palsy.
Next Wednesday (26th May), Amy will be joined by guest speaker Lynda, an advanced physiotherapist with Queensland Health, who has over 25 years of clinical experience managing children with cerebral palsy. Don't forget to register your spot in the Ask Amy Webinar on Early Diagnosis and Intervention by clicking here.