Latest Episode

On Tuesday, February 12, JW had a seizure and 5 minutes into it I administered Diastat (valium) and rushed him to the ER.  He needed to be monitored overnight and the ER doctor felt they could not safely do that so they transferred him by plane to Children's Mercy in KC.  They only wanted to monitor him from the seizure and diastat given.  We pushed for an EEG and they refused.  He was not himself Wednesday, he was very lethargic, slurring words, thoughts were delayed and his face just didn't look right.  Then on Thursday when I insisted, they finally hooked him up that afternoon.  He was hooked up for 24 hours and the results showed no seizure activity.  We did speak to the neurologist about our concerns of his seizures being fever and heat related and she ordered genetic testing for a specific type of epilepsy.  It is called generalized epilepsy with febrile seizures plus and we will not know the results for about a month.  We also discussed with the neurologist our feelings that his Trileptal was not working and/or causing his seizures to increase.  We are not ready to try a new medicine till we get better answers from Cleveland.  So it was decided that we could at least wean him down to a level of the Trileptal before his activity increased.  This is what we will do till a new medication is decided and a clear diagnosis is made.

While we were at Children's Mercy, I contacted the Cleveland Clinic and explained what was going on.  They bumped us up on the scheduling list and we have been scheduled for a panel of tests on March 1.  So we are beyond anxious to  see a specialist and hopefully get some answers.  The appointments are only two weeks away so we are going to have to come up with some funds pretty quick.  If you are interested in helping, please check out the Fundraising tab.  Any amount will help.  Thank you for your prayers and support.