Lightning Strikes

Last week, Reagan had her first PET scan.  Her Epileptologist feels that there is a potential for her seizures to be focal seizures with secondary generalization.  Translation: Her EEG’s have always shown generalized seizures where her whole brain lights up, like heat lightning.   However, while they are super consistent in their pattern everytime, they are atypical for myoclonic seizures.  Focal seizures occur in only one location, like lightning, and are caused by abnormalities in the brain, like a lesion.  If the doctor’s theory is correct, then Reagan is having lightning strikes that look like heat lighting in an instant, making it hard to see the initial lightning strike itself.

The PET scan did not find anything.  So, either the location of the initial lightning strike is too small to see, or there is no lightning strike before the heat lightning.

The next day, we checked into Children’s Hospital for Reagan’s EMU (multiday EEG).  During EEG’s, when Reagan has a seizure, we press a red button to mark it on the EEG itself.  The whole event is on video and recorded.  While we were there, she had 30+ events in 24 hours, which is a big reason why we were able to go home a day early.  But, the weirdest part of it all is that only 3 of them showed up on the EEG as her typical (atypical) myoclonic seizures, or heat lighting.  The other ones did not show up on the EEG at all.  Physically, no one could tell the difference between the ones that showed up on the EEG and the ones that didn’t.  The doctor watched the video multiple times and couldn’t tell just by watching her which ones were which.

It’s safe to say that at this point, no one really knows exactly what is going on.  It is possible that she may have developed a tick, or even an overreaction, that presents itself just like her seizures, but without it being a seizure.  It’s also possible that she is having lightning strikes, but that they are too deep in the brain to be picked up by the EEG, and that the only time they are picked up is when they quickly become heat lightning.

Our Epileptologist is going to present Reagan’s case at a conference to other Neurologists/Epileptologists and Radiologists.  The hope is that she can get the expertise and opinions of the other doctors with a hope of finding something that will work for Reagan.

The good news from all of this is that her heat lighting seizures have gone down significantly since we did her last EMU study in September 2016!

With all her testing done for the year, and with our wait until the conference, we can enjoy Christmas satisfied that we have the best path forward, even if it is still pretty unclear.

Reagan was so pumped to have two juice boxes when she woke up from her PET scan!

Reagan meeting Santa.  She was so excited!

Reagan all hooked up to her EEG just before going in to her PET scan.  She had to have the EEG hooked up when they put the dye in here to see if she had a seizure or not, so they would know how to interpret the results. 

 

It’s been one hell of a 2017 for Reagan and her Epilepsy. 

Here’s to a wonderful Christmas and a great 2018!