For months consultants have been conflicting opinions regarding Toby's Seizures. Toby does not lose consciousness yet his development has been impaired. His seizures have predominantly been in Clusters of spasms and then in between each throughout the day he has had complex partial seizures which would make him jack knife forwards resulting in him hitting his head or falling.
Toby is currently on the highest dose of Keppra (myoclonic seizure treatment) and Epilim (anticonvulsant) both of which made a slight improvement and then nothing - His doses started low and quickly got increased despite him making no improvement and his seizures actually got so much worse that we got him a helmet.
Prednisolone steroid worked almost instantly with Toby's seizures almost disappearing, the respite was bliss however the clusters of spasms returned slowly as we reduced Toby's dose.
With the help of Toby's community nurse who had witnessed many of Toby's seizures, we videoed Toby's clusters as they manifested much more frequently yesterday 28/12/11. The aim was to argue that we thought his seizures were more like infantile spasms. You can view all of Toby's videos on You Tube by typing in 'Toby's Seizures'.
Toby has been immediately prescribed Vigabtrin which they are confident will work... I am picking up the prescription today and I pray that 1, it works and 2, Toby's eyesight is not affected :(
