Jayne Gannon

My Son Journey with Infantile spasms

Thursday 5th Feb My son Chulainn when he was 5 months old was diagnosed with infantile spasms its a rare and very aggressive form of epilepsy also none as west syndrome. When he was 5 months he start to make these movements were is whole body would go into a spasm, his head would drop and his eye would roll in his head. We brought him to hospital and within 5 days was diagnosed and had started treatment, his diagnosis was made quite quickly as we had recorded the spasm knowing something just wasn't right. This was extremely  beneficial to his diagnosis as infantile spasms can very easily be mistaken for reflux in a child so young, and the longer this is left undiagnosed the worst damage is being done to his brain. Each spasm is doing damage to his brain development. The medication in itself has lasting effects which can damage his eyesight and he could loose his peripheral vision. Chulainn is now 2 years old and although he is behind in development is a happy little boy, who knows no different. I'm doing this March walk challenge to raise much needed funds for Epilepsy Ireland and to help raise awareness of the signs of infantile spasms. Quite diagnosis is key and knowing the signs helps...