Where are you in your journey?
If you have concerns about your baby or child’s motor development and would like to know what support and help is available, you can learn more below.
Do you have concerns about your child?
Every child is unique and develops at different rates. However, if you have concerns about how your baby or child is moving or developing, speak with your doctor or health visitor as soon as possible so that your child can get the help they need. Please see below for answers to some of the questions that you may have along with links to practical information on the care, legislation, financial, parent and family support available as well as advice from other parents.
Commonly Asked Questions
It is important to remember that babies develop in different ways and at different rates, but you should trust your instincts and if you have any concerns about your baby’s movements or development, don’t panic but check it out and speak to your doctor or health visitor or paediatrician.
Key signs that you should seek professional advice are; your baby feels floppy, stiff or a combination of these, is not using hands or both sides of the body normally or is late in reaching milestones in sitting (8 months) and walking (18 months). You can read more about the signs of potential cerebral palsy here. There may be other reasons why your baby or toddler is showing these signs, but it is still important to check it out.
Between birth and 3 years of age, your baby’s brain is developing and growing very rapidly – more than at any other stage in life. As your baby moves, they are experiencing and learning about the world around them and so it is very important that if they are having problems with movements (sometimes called motor skills), they get expert help as soon as possible to minimize the impact on their learning and overall development. Seeking early help will also enable you to get the support you need as a new parent and will help the wellbeing of the whole family. Click here to see a short video explanation.
The GP or health visitor may watch your baby’s movements or carry out some simple tests. They will ask you about your concerns. It might be helpful to take some photographs or a video of your baby to the appointment to help the professional see why you are concerned.
If the doctor or health visitor shares your concerns, they may refer your baby to a paediatrician (specialist children’s doctor) or a paediatric neurologist (specialist in children’s brains) based at a children’s development centre or hospital for further assessment. You should not have to wait more than a few weeks for your specialist appointment, but if you have seen a GP or Health Visitor and have been referred to a specialist, but haven’t heard when the appointment will be, don’t be afraid to chase this up because it is important that your baby is seen by a specialist as soon as possible.
The specialist assessment will be longer (1-2 hours) and look at several aspects of your baby’s development as well as their movements using specially designed developmental tests. The assessment will be led by a paediatrician (specialist children’s doctor) or paediatric neurologist (specialist in children’s brains) or if your baby is still very young, a neonatologist (specialist in new born babies). The doctor will talk to you about your pregnancy and baby’s birth history, and about your baby’s general health and well-being. The doctor will explain what will happen during the assessment and ask if you have any questions.
There may be other professionals, such as a physiotherapist, occupational therapist and speech and language therapist or other specialists at the assessment (this is called a multi-disciplinary team or MDT), who will carry out the developmental tests as a team or separately.
Tests that may be carried out at the assessment may include;
- Qualitative Assessment of General Movements (sometimes referred to as GMs or Prechtel). This screens for abnormal movements which can be predictors of cerebral palsy. The best time to carry out this assessment is at about 3 months of age
- HINE (Hammersmith Infant Neurological Assessment)
- Bayley Scale of Infant and Toddler Development
The HINE and Bayley assessments include a range of activities that the therapists will carry out with your baby which will help them to assess what level of development your baby is at and any difficulties that they are experiencing.
The doctor may arrange for a brain scan (MRI or CT) and or an EEG to be carried out to give a more detailed picture of your baby’s brain development. Blood tests may also be taken.
When the team have finished their assessment of your baby, they may discuss their initial thoughts and give you advice as to what you can do to help your baby with their movements and general development. They will tell you what will happen next and ask if you have any questions at this stage.
Once you and your baby have been for your specialist assessment, the specialist team will discuss their findings and decide on whether or not your baby has, or is at risk of cerebral palsy.
You should hear back from the paediatrician within a few weeks, but again, if you don’t, chase up the results so that if your child does need extra help, this can start as soon as possible. If you are given a diagnosis of cerebral palsy, don’t panic – the multi-disciplinary team should answer any questions you may have and discuss with you what support will be put in place for your child and who will provide it – the care plan. They will also inform your GP and your local paediatric services team.
It is important to know that however worried you might be, you are not alone and there is help available at every stage. It is best to start with the health professionals who know you and your baby, but there are also many online forums and websites such as this one which can give you information and support. The national charity, Scope, provides a free 6 week programme called Parents Connect supporting parents and carers. See here for more information about Parents Connect: https://www.scope.org.uk/family-services/parents-connect/. You can also contact specialist early intervention services who will be happy to answer any questions you may have. Also, parent groups, special needs play groups or online chat lines or groups can be a great source of support.
Cerebral palsy is an “umbrella” term that is used to describe a range of movement disorders which can have an impact on many aspects of normal childhood development. It is sometimes referred to as “the cerebral palsies” or CP. It happens as a result of interference or damage to the development of a baby’s central nervous system (the brain and spinal cord) between conception and 3 years of age.
The way in which it affects body tone (muscle strength) and movement skills will depend on where the damage in the brain has occurred. The initial damage to the brain will not get worse but its effect on a developing child’s muscular and skeletal systems, and hence motor (movement) and functional abilities, may lead to problems with movement and posture as the child grows. It can also interfere with the way the child is able to physically interact with his/her environment, communicate, carry out self-care skills and learn from the normal activities of childhood. This is why early intervention is so important for children at risk or with cerebral palsy.
For more information about cerebral palsy, please click here.
The different types of cerebral palsy are:
- Spasticity: high tone (stiffness) with tense muscles. This is the most common type of cerebral palsy.
- Dyskinetic: sometimes referred to as dystonia, athetosis or chorea. This is characterised by fluctuating tone creating constantly changing involuntary movements which are difficult to control.
- Ataxic: poor sense of balance causing falls and stumbles
- Sometimes there may be a mixture of these presentations.
For more information about cerebral palsy, please click here.
There is often not just single cause of cerebral palsy and it can take some time to accurately establish the exact cause. Also, in almost half of babies who go on to have a diagnosis of cerebral palsy, there will be no obvious risk factors present. However, the following are risk factors which may result in cerebral palsy:
- Interruption of the blood flow or oxygen to the baby’s brain before, during or after birth
- Low birth weight
- Maternal disease, infection or pre-eclampsia during pregnancy
- Haemorrhages (blood loss during pregnancy or in baby after birth)
- Toxins passed to the baby during pregnancy, for example tobacco, alcohol, prohibited drugs
- Heart/respiratory distress
- Blood group incompatibility
- Multiple births
- Maternal history of miscarriage or still birth
- Genetic predisposition
- Post-natal infection, stoke, accidental or non-accidental brain injury in baby
It is very important not to jump to conclusions or blame yourself if your baby has signs of cerebral palsy. The exact cause will be different for every child and sometimes there will be no definite answer. Once a detailed assessment has been carried out, your medical team may be able to explain possible causes for your baby’s difficulties. However the most important thing is to ensure that you and your baby gets the help you need as quickly as possible to reduce the impact of their difficulties on their development and wellbeing.
A Parent's Story
“Cerebral palsy is a lifelong condition, there is no cure, and despite it being the most common physical disability in childhood there was little support in helping us as parents adjust to the new reality of our lives; a lifelong commitment as carers. That may now change thanks to the work and efforts of Action Cerebral Palsy; they are working hard to try to ensure that no more parents face the anxiety, loneliness and isolation that we have felt and that children and their families have the support and help that they need at every stage of their journey.”
– Helen Hunt, mother of Wilf
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