Tuesday we had an EEG for Meghan. We have seen very little to no seizure activity over these past several weeks, so I was so excited to see what the EEG would look like. Well...not too good. Still abnormal with more spiking on the left side (the more "sick" side) with some on the right. It is hard to say if she is actually have seizures on that side, or if the seizures are firing very close to the right side and just crossing the hemisphere. She had better EEG's when she was on the Steroids, but the overall improvement from the Steroids themselves was very minimal. Minimal enough where he felt that the risks outweighed the benefits. So far, the medication that has worked the best is the Felbatol. Dr Chez was hoping for a better EEG, but was so totally thrilled to hear about her diminished seizure activity.
Meghan has been seizure free, but her balance is so bad. She literally bounces off the walls when she walks down the hall. It is so sad to see her get frustrated from falling all the time. So, starting today, we are reducing her Clobazam and Depakote to see if that will help her. I'm totally nervous. I really hope that we wont see an increase in her seizure activity.
So I spend a lot of time on the Internet researching Epilepsy. About a month back I happened upon Dravet Syndrome. When I read about the onset, seizure progression, triggers, reluctant to medications, and the developmental delays, I could swear this was written for Meghan. So Tuesday I asked the Neuro about her possibly having Dravet Syndrome. He indicated that he was pretty sure that during her genetic testing, the SCNA1 Channel came back normal, which it did. I reminded him that it was indicated that one of her channels came back abnormal. He pulled up her tests and found that she did have an abnormal mutation in her KCNQ2 Channel. He then went on about how the Channelopothy's work and blah blah blah blah (I shut down when it comes to genetic talk). To sum it up...he is confident the she has some form of epilepsy that could be Dravet (because you don't need to have the gene mutation, they can clinically diagnose it) or related to Dravet (undiscovered...still). Hello...where is my kick down doc??? After all, I suggested it...right (LOL).
From here going forward, we are going to continue on our path of treatment of medications. She is responding well to these current medications which is awesome! We will be doing another MRI in hopes to see a reduction in her brain inflammation due to the past Steroid treatment and her lack of seizure activity. We have the Keto Diet in our back pocket if need be. We are also going to more than likely pursue the HBOT (just need to figure out fundraising). Unfortunately our hope that Meghan will outgrow her seizures is diminishing rather quickly. So...we will pick up our boot straps and keep on truckn (I think that's a saying...I get them confused).
9 months ago