Today we met a lovely new family from Lithuania who have a 12 month old little boy who has West Syndrome. He has a complex combination of seizure activity, including 'infantile spasms.'
Despite 3 courses of steroids the spasms persist and indeed he had one during his initial evaluation at Snowdrop today. One of the drugs he is on, 'Sabril' has almost certainly contributed to the demise in his visual function but the spasms and steroids combined have caused developmental deterioration. I was able to see videos of him prior to his problems coming to light and he was a vibrant, interactive little boy, who was no comparison to the little boy we saw today. Hopefully as the steroids wear off, some developmental function will return but we also hope that the programme of stimulation we are prescribing will have a beneficial effect, - helping to rebuild abilities. I will keep you posted.