Nothing New

So Yesterday we headed to Oakland for Presley's follow up EEG and a meeting with her neurologist. For those of you who don't know what an EEG is, it is a test done to measure brain waves. Kids with Infantile spasms have a certain brain wave pattern called hypsarrythmia which is an abnormal wave pattern. Although Presley's seizures have been improving her EEG was still showing that abnormal wave pattern. Mark and I always become hopeful when she goes 2 or 3 days with no seizures but we learned that even if her seizures go away 98% it isn't good enough, they need to be 100% gone and the EEG needs to be normal again before we can get excited. Usually once the seizures have stopped and the eeg is normal the infantile spasms won't come back, but Presley will still have something like a 50% chance of developing a different kind of epilepsy at some point. Infantile spasms are one of the more dangerous types of epilepsy so right now we're just worried about getting those under control asap!

Because of these results we've decided to add a new medication to the mix. We're adding vigabatrin which has the scary side effect of possible peripheral vision loss. Although we're not thrilled with this side effect we have to take the risk in hopes of getting these seizures stopped. We are now weaning the prednisolone (steroids) since those didn't stop the seizures. The wean will take six weeks which means we'll still be pretty much house-bound during that time because her immune system will still be compromised. We can officially come out of hiding March 3! We go back for another EEG in a month to see if Vigabatrin has normalized it, we'll go back sooner if she has a week with no seizures.

After the appointment my parents watched the kids so Mark and I could get out for a much needed date night. We went to see a movie then to get some yummy Old Chicago Pizza. It was nice to get out but just goes to show how different our lives are... inevitably dinner conversation revolved mostly around seizures, medication and our future with a special needs child. We then had to rush through dinner to pick up the kids in order to get home in time for Presley's nightly meds. We're hoping things will get easier for us as we continue to adjust to our new "normal life".