December 1st to 7th marks Infantile Spasms Awareness Week (ISAW2022).
The week is a global event and is co-ordinated by the Infantile Spasms Action Network – a group of organisations across the globe committed to raising awareness of these rare but extremely serious types of seizures. Epilepsy Ireland are members of the Network, and we are proud to join the global awareness raising efforts.
Infantile Spasms can present very subtly, meaning they are often misdiagnosed and confused for other conditions such as colic, reflux or startle reflex. However, if they continue to be untreated, the spasms can cause serious damage to a child’s developing brain.
Infantile Spasms most likely present in infants aged between 4 & 6 months, but they can also present at any time in a child’s first two years of life. Therefore, it is crucial that new or expectant parents are aware of Infantile Spasms and to remember the key word of STOP if they think their child is experiencing Infantile Spasms:
- See the Signs
- Take a video
- Obtain diagnosis
- Prioritise treatment
We are appealing to all new or expecting parents to please learn more about Infantile Spasms during #ISAW2022 – and are also encouraging Healthcare Professionals to learn more about the Spasms as well, given how often they can be mistaken for other conditions.
To that end, throughout the week we will be sharing information on Infantile Spasms on our social media channels, as well as sharing direct personal experiences of Infantile Spasms from families who have been affected. You can read these stories on our website at the links below:
- Read Elaine’s story about her son Ben’s experience with Infantile Spasms
- Read Fiona’s story about her son Theo’s experience with Infantile Spasms
On Tuesday 6th December, we will also be hosting a Special Infantile Spasms Information Session - with Dr. Mary O'Regan, Consultant Paediatric Neurologist at CHI Crumlin. This session is targeted at new parents, expectant parents, and Healthcare Professionals. If you would like to register to attend, visit the ‘Events’ section of our website.
Please join with us this #ISAW2022 and share our messages on social media to help raise awareness and please to bring the above to attention of any new or expectant parents you may know – or to the attention of colleagues if you are working in medical settings.
To learn more about Infantile Spasms and to access further resources – visit the ‘Infantile Spasms’ awareness section of our website.