Diagnosis Journey: Part 3- Aicardi Syndrome, Lennox-Gastaut Syndrome, and Beyond
Diagnosis Journey: Part 3 Aicardi Syndrome, Lennox-Gastaut Syndrome, and Beyond This weekend, September 2nd in particular, has a pretty heavy significance for us. September 2, 2021 was the day Sage had her MRI that diagnosed her with PVNH. Then, exactly a year later, September 2, 2022 she was officially diagnosed with Aicardi Syndrome. The Aicardi Syndrome diagnosis actually started on April 1, 2022 (no kidding). ☺️ After getting the Infantile Spasms diagnosis for Sage, starting her on meds that were helping (Vigabatrin), starting her in therapies, and learning how to keep moving forward with life, things seemed to finally be looking up. We were figuring out how to deal with her seizures a bit better, they had slowed down and she finally started making strides in her development. I was also finally able to focus on Clover more because my debilitating fear for Sage had become a bit more manageable. (Clover was such a trooper through everything and has always been