Ryan is an identical twin born at just over 30wks. He was very poorly at birth and had to be rescusitated then ventilated for a while. An ultrasound during his 6wk stay in SCBU revealed a bleed on the brain although we had no idea at the time how bad things were.
At 11 months old we had a diagnosis of Cerebral Palsy, I had worked for a children's neurological charity and knew all the signs that were there. Ryan was a fussy but happy baby and toddler until just after his 4th birthday when he had his first seizure. This was diagnosed as a febrile seizure and nothing more was said. Signs of epilepsy were present from birth but put down to symptoms of his CP.
In August 2009 I woke to find Ryan face down in a huge pool of saliva and in a full blown tonic clonic seizure. This must have been going on for a great deal of time and continued for a further 45 minutes until paramedics arrived and he started to come round on his own.
A huge regression occurred after this and Ryan's overall development was pushed back to that of a toddler again. An MRI scan that followed revealed the true picture of Ryan's brain damage - he has a severe amount of white matter death (pvl) and the central pathway of his brain which join the left and right halves is also affected.
Several seizures and medication later and Ryan is now drug resistant, even the modified atkins for seizures diet didn't really help. But he is a wonderful, albeit moody, young man who has thrived as a home educated child over the past few years. He loves life, company and his family.x