Presenting….

Earlier this year Reagan’s case was presented at a conference by her Epileptologist to other Neurologists, Radiologists, and Neurosurgeons.   As it turns out, everyone was very interested in Reagan’s case. As Blake put it, “doctors treat diseases, neurologists admire them.”

From this conference a new theory emerged, and we quickly started scheduling more tests in the hopes that we would finally be able to find where her lightning is coming from.  The new theory is that her brain tumor may not actually be a brain tumor, but a malformation of cells that have caused abnormal tracts to form in her brain (basically highways between various parts of the brain), which are the cause of her lightning.  To test this theory, Reagan was signed up for a development test, a sleep study, and a MRI with DTI (which allows the doctors to see the tracts of her brain).

Since it was clear that her current two AEDs (anti-epileptic drugs) were not working, we finally got the green light to start weaning them.  Onfi was the first one to go since it is the hardest to wean and can cause more seizures while weaning.  We got a 2.5 month wean schedule that we started right away.  It’s always hard to tell with a kid Reagan’s age if she’s just being a normal 3-year-old, or if she’s experiencing side effects from the wean.  Are all of her out of the blue tantrums from the wean, or are they because she’s just a typical unstable 3-year-old?  Is she not sleeping because kids hate sleep or because of the wean?  We try to treat everything as just normal kid stuff, but always have it in the back of our minds that it could be the wean and seizures  causing her behavior.  I’ve come to terms with the fact that we’ll probably never know.

She’s on track developmentally, even if she may have some problems paying attention at times (not sure where she gets that from….).

Once we got the results from the MRI, it was clear that the original theory no longer held up.  They didn’t find any abnormal tracts originating from her brain tumor.

The sleep study went pretty smooth.  We had it originally scheduled for the end of April, but then had received a lat minute call that they had an opening that night, about a month earlier than we were able to get her scheduled for.  We quickly took the spot to get the test out of the way.  As soon as she was all hooked up to the EEG and the rest of the equipment, she turned to me and said, “Mom, look!  I’m a robot!” and immediately started doing her version of the robot dance.

They didn’t find any abnormalities with sleep during the study, which we expected.  But, because we had been weaning her Onfi for almost 1.5 months at that point, her Epileptologist did get a clearer picture of her brain’s activity.  Apparently AEDs, even ones that don’t work, mask some of the activity in the brain when it comes to seizures, almost like the lightning is subdued in how it shows up on an EEG.  With less AEDs, the EEG can see and record more of the lightning’s activity when she has a seizure.

By being able to see more of the lightning’s activity, her Epileptologist was able to get a glimpse of where the lightning was potentially coming from.  Turns out, it was not the brain tumor.  Her sleep study EEG started to point towards the initial lighting strike being deep inside the midline left frontal region of her brain.

Hearing this was like seeing a small flash of light at the end of a dark, seemingly never ending, tunnel.  Even though we are still nowhere near that light at the end of the tunnel, in that instant flash, we saw the first real glimpse of our surroundings and were able to take a definite step forward.  It maybe slow going, but we are now fully chasing that flash of light we had a glimpse of, hoping that as we move forward, it will become brighter and more steady as the light at the end of the tunnel.

We finally finished the first wean and have started a 2-month process of weaning her second medication.  Once we are done with that wean, we will do an overnight EEG to see if they can’t get a really clear picture of the original source of her lighting.  Even though we are done with our wean by the beginning of June, the earliest we could get scheduled for the EEG was the end of July.  We’re keeping our fingers crossed that’ll we’ll get another last minute call for an open spot once we are done with this wean.

Out next steps are fully dependent on the details they are able to see on the EEG.  Until we see what they can find, we will enjoy the weather, camping, and family time, and, as much as we can,  forget about Epilepsy.

Reagan heading into her MRI.  She loves being able to ride in the wagons that they have at Children’s.  

Robot Reagan doing her robot dance.  

First camping trip of the season!  Reagan was so happy to be camping with us, so much so that she didn’t want to go home.