Infantile spasms (IS) is a rare condition, affecting about 400 children a year in the UK. The average age of onset is about 4 months old, but children may start to experience spasms as early as one month or as late as two years. The spasms are short seizures, lasting 1-2 seconds, and tend to come in clusters with a gap in between each spasm – a cluster can last several minutes, and the same movement is repeated over and over. A spasm can be a flexing forward of the body, head dropping and bringing arms and legs inward, or as subtle as the head dropping forward repeatedly. Spasm clusters often happen around the time of sleep transitions or feeding times. Spasms can be very subtle, which makes it difficult for parents, caregivers and sometimes doctors to recognise that this is a serious problem.
A child experiencing IS seizures has a constant chaotic brainwave pattern, detectable with an EEG test, which interrupts normal development and learning of new skills. Children often appear withdrawn, vocalise less and stop interacting with caregivers when spasms start. The longer spasms persist before they are treated and hopefully controlled, the greater the risk that development will be permanently adversely affected. If spasms are stopped rapidly, children have a better chance of normal development. That’s why UKIST is working together with other members of the Infantile Spasms Awareness Network across the world to improve recognition of the symptoms of IS and raise awareness of its characteristics.
If a child is suspected of having infantile spasms then capturing footage on video is incredibly helpful. As long as the child is safe, try to film them from a short distance away, so the whole body and face is in the frame and continue filming throughout the episode. Young babies with immature nervous systems often make odd jerky movements, but repeating the same movement over and over should arouse suspicion.
Suspected infantile spasms is a neurological emergency. The child should be taken to A&E at a hospital with access to a paediatric neurology service and will need to have an emergency EEG. An EEG is a test where small electrodes are taped to the scalp to record brain activity – if a child has IS then the EEG typically looks like a child has scribbled all over it rather than being calm and orderly in a typical infant. If a diagnosis is made then treatment is started straight away with high dose steroids or an antiepileptic drug called vigabatrin. Infantile spasms are often a sign that there is an underlying problem with the brain, so a process of testing will begin to try an identify this (for example, genetic testing, MRI scan, blood tests).
If you suspect infantile spasms in a child you are caring for, we would encourage you to STOP.
More detailed information is available on our website www.ukinfantilespasmstrust.org.uk
About the author:
Jenny is a mum of three, a veterinary surgeon, and a founder member of The UK Infantile Spasms Trust (UKIST). Her daughter Faith was diagnosed with infantile spasms in 2015.