Category Archives: Infantile Spasms

Giving a little back

From the initial diagnosis of Matthew's infantile spasms right through to providing support for his eye rolls post discharge the guys at Temple Street Children's Hospital have been amazing. The time has come were we can now give a little something back, and perhaps help other children and their families that are suffering from neurological…
Read more

World at his feet

I should have updated this blog sooner. It's been over a month since Mattie was back at Hospital. In late April he returned for what was his final check-up with the Neurology team at Temple Street Hospital. This check-up had been planned for a while. It's not often that anyone actually looks forward to a…
Read more

A Very Different Train Journey; Mattie’s Christmas

12 months ago the whole family enjoyed a Christmas steam train journey. It’s a fantastic trip organised by the Irish Train Preservation Society. Importantly at the end of the trip everyone gets to meet Santa. Last year Ben, our eldest son, had an absolute blast but in the middle of all of the excitement myself…
Read more

Top 3 tips on Mixing Sabril (Vigabatrin)

Myself and Emma have seen a number of people mention that their children are rejecting Sabril when it is mixed with water; they’ve ask about mixing Sabril with other drinks, and if this is possible. We thought we would share our experiences and the top 3 tips we learnt. Tip 1 : Worrying about this…
Read more