ENCEPHALITIS CASES

Encephalitis Cases

Xavier

Hi, I want to share my story of Rasmussen's Encephalitis with you all. On the 8th January 2003, our son Xavier 3yrs 1month had a really big seizure...(and I say 3yrs 1 month as he was a twin born at 25 weeks, actual birthday 27/8/99).

Ok that was a really stressful time, we went to hospital, he had another slighter seizure about 2 hours later, they said he had Epilepsy. (We wish). For the next 6 months we spent around 2 months in the Royal Children's Hospital (Melbourne), trying out every conceivable epilepsy medication known to man.

However, to our dismay nothing worked, and Xavier grew weaker by the day, to finally, he couldn't walk, talk, or do anything much like a toddler of his age would do. He was diagnosed with Rasmussen's early April-May of 2003 and had a Functional Hemispherotomy on the 10th June 2003, he was having up to 100 huge seizures a day. After surgery he was amazing and was seizure free for 41/2 months, then started having them again. He has just had further surgery on the 23rd December 2003 for the rest of his brain disconnection.

Xavier is like a 2 year old, (he is 4) but is starting to talk again...very limited words, he will never get the use of his left hand, and walks with a pronounced limp. He also has no left vision in both eyes, due to the disconnection of the right hemisphere of his brain, but he is a determined little soul and will survive.
Yours in support,

Nerida
Melbourne, Australia

Posted: 2003

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