I know I have said it before, but I will say it again, Epilepsy it the worst. I hate it. We all hate it. It has the power to take so much from you and those around you. It can take everything. We have spent so much time giving in to Epilepsy and letting it … [Read more…]
2 years, 3 months, and 9 days. 829 days of anywhere from one to seven different medications for her Epilepsy that didn’t work. For more than half of her life she has been taking medications and dealing with side effects. But not today. Today is her first day with no medication. At the end of … [Read more…]
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 … [Read more…]
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 … [Read more…]
November is National Epilepsy Awareness Month. With that in mind, here is a brief rundown of Reagan’s Epilepsy and Epilepsy in general. It’s been a very, very long 2+ years working our way through Reagan’s Epilepsy. We still are dealing with a steady increase in seizure frequency, including nocturnal seizures. She’s currently on 3 anti-epileptic … [Read more…]
Reagan has Doose Syndrome. That is what we have learned in June. Doose. A genetic syndrome that only 1-2% of children with Epilepsy have. Genetic. That was the hardest part for us to initially wrap our heads around. Last year, we had spent a considerable amount of time and effort getting the Epilepsy genetic test … [Read more…]
May 16, 2017 – 6 month follow-up MRI She did great! The beast has not grown! And now, because it is still stable, she doesn’t have to do another MRI for an entire year! This is absolutely amazing compared to the original diagnosis of having to get an MRI every 3 months. June 1, 2017 – … [Read more…]
I imagine that it is hard for any parent, especially first time parents, to know what they need to do to be a “keep the child alive” parent, not to mention what it would take be a good parent or even an outstanding parent. One of the fastest lessons I learned as a new Mom … [Read more…]
Tuesday, May 9, 2017 – Graphing to be objective Apparently, I wear my heart on my sleeve, and can be very emotionally driven when I get worked up about something. When I get worked up, things tend to get blown out of proportion. I have known this about myself since I was a kid, and … [Read more…]
Tuesday, April 11, 2017 – Epilepsy is the worst. There are so many small, normal, day to day things that should be easy and shouldn’t be an issue or even be a second thought. But with Epilepsy, those little day to day moments can quickly become something different and something harder to tackle. It can be as … [Read more…]