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In 2009 Isaac had an unexplained fever for 3 months and the doctors could not figure out why. They thought at first that it was strep throat and gave him a round of antibiotics but it didn't work so they gave him a shot of penicillin and that didn't work and they followed that up with another round of antibiotics that of course didn't work. Finally his pediatrician referred us to an ENT to have Isaac's tonsils and adenoids removed.
While we were waiting for our referral, the fever got worse and Isaac said he was having trouble breathing so we took him to the ER where they gave him steroids and sent us home. That Sunday we were supposed to have Isaac's 6th birthday party but on Saturday, the day before the party, he wouldn't wake up. We took him back to the ER where they did a ton of tests, said they had no idea what was wrong and tried to send us home. At that point Isaac had been asleep for 30+ hours without food or water so we said no, we are not leaving until you tell us what is wrong with our son! The ER doctor argued with us and tried to make us leave but our pediatrician had us admitted. The next morning, Isaac had a seizure that lasted 15 minutes and we were transferred to Mary Bridge Children's Hospital. Within hours of being there, they had done a spinal tap and MRI and had a diagnosis, herpes encephalitis. He had contracted the cold sore virus which then passed the blood/brain barrier and had been attacking his brain for 3 months, hence the fever.
We lived at Mary Bridge for 2 weeks hoping and praying that he would be ok, we were told he might die and that if he lived, he would most likely be severely handicapped both physically and mentally. When Isaac first woke up he had no idea who we were... He could no longer walk, feed himself or do anything he used to be able to do. Mary Bridge didn't have an inpatient rehab facility so we were transferred again, this time to Seattle Children's Hospital. We were there for a week and he slowly came back to us and got strong enough to be released into out patient rehab.
He is now back to being you average everyday kid... he gets good grade, has great friends and thankfully is not severely handicapped as they had thought. He does however, have epilepsy.
Recently, we had given up hope that medicine would ever work to control Isaac's seizures and we did testing to see if he was a candidate for brain surgery. While waiting for all the tests to be done, we decided to try one last medicine, Lamictal. He is now 3 months seizure free and so we have postponed surgery! This is amazing news, a miracle really, as the doctors gave him a less then 1% chance of any medicine working! Although he is doing great now, that can change in an instant and so the doctors apts and the medicines continue. This will be life long for Isaac.
There is our story, this is why we need help.
https://www.facebook.com/IsaacsEpilepsy?ref=hl
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