The UK Infantile Spasms Trust is working hard to ensure medical professionals have access to accurate, up-to-date information on infantile spasms. Only around 400 cases of infantile spasms are diagnosed each year in the UK, and it is estimated that the average GP will see just one case of infantile spasms in their professional career. We are therefore committed to ensuring primary care professionals, as well as hospital doctors, are familiar with the symptoms of this rare disorder, and have information available to support diagnosis.
What to look for
Infantile spasms are short in duration (1-2 seconds) and jerky movements that often occur in clusters, with a period of relaxation lasting many seconds in between each spasm. The movements often consist of the head dropping forward, the arms being flung forwards and the legs being drawn up towards the body. They can also be very subtle, sometimes only involving a nod of the head or a movement of the eyes.
Infantile spasms can look very similar to normal baby movements associated with colic and reflux, or a baby’s normal startle reflex.
We would encourage all primary care and hospital doctors to watch our video, which includes examples of a number of children experiencing infantile spasms.
UKIST's medical advisor, Dr Andrew Lux, is a consultant paediatric neurologist at Bristol’s Royal Hospital for Children and a specialist in childhood seizures and the treatment of infantile spasms.
Dr Lux is also an honorary senior clinical lecturer at the University of Bristol and Institute of Child Health in London. Dr Lux played a key role in compiling our Guide to Infantile Spasms below.
The guide contains details on diagnosing infantile spasms, possible causes and treatments.
Find out more
UKIST has published a guide for families and medical professionals, which you can download here. You can also request printed copies of the booklet to give to newly diagnosed families and colleagues using the form opposite.
The booklet contains information on the symptoms of infantile spasms, diagnosis (including referral to paediatricians and neurologists, and the role of EEGs), the link to other conditions including structural problems with the brain, genetic diseases and metabolic diseases, information on treatment including Hormonal treatment with ACTH or prednisolone, treatment with vigabatrin (Sabril), surgery and other AEDs.
Request booklet copies
Medical professionals can request up to 10 copies of our booklet, for reference and to give to families – just complete the form below and we’ll send the copies directly to you.