Alfie waa born seven weeks early and started having seizures. After lots of investigations he was found to have epilepsy. Also, neurologically his prognosis was poor. The first year he was in and out of hospital with seizures and tried on multiple meds as well as the ketogenic diet. After he turned one in May 2014 he spent four weeks in HDU due to heavy seizures.
Later that year we got some control and Alfie has a peg fitted due to it being unsafe to wallow. We had ten months seizure free and Alfie learnt to smile. Then he had a year struhhling with nihht time seizures where he would scream and cry.
After a year a new med was started which helped. However his normal seizures re started daily until up to last week where he was having up to 8 seizures a day. Alfie cannot do anything for himself...he is severely physically and mentally disabled...he cannot sit, stand, roll or hold his head up. He cannot communicate except for his amazing smile. Currently over last two weeks since admission to hospital following hourly seizures a new med was started and we have had an improvement.