Our son, Bennett Rackham, had his first generalized tonic-clonic seizure at 7 months old--having developed neurotypically up until that point. We were in shock as he seized for 5 minutes and we waited for the paramedics to arrive to help us. Thankfully, his seizure stopped on its own and when we got to the hospital we were told it was probably just a one-time thing--even though he had no fever that caused it. Little did we know we had just experienced the first of what would be about 40 seizures over the next 4 months of his life, and the beginning of his journey with intractable epilepsy.
We have confirmed that he has a genetic mutation on his SCN8A gene, which is associated with the Cute Syndrome. This means that this will be a lifelong fight for Bennett as we try to maintain control of his seizures and help him develop and continue to learn in spite of heavy medications which slow his functioning down significantly and seizures which can cause regressions in progress.
I wanted a place to keep all of my thoughts and experiences recorded so we would be able to keep it all straight, but I’ve also been grateful for the other families who have publicly recorded their children's journey with complicated epilepsy and if I can help even one desperate mom feel like she's not so alone in this, then this blog will have served its purpose. Thanks for reading along as we continue to help Bennett as best as we can through what is sure to be a roller coaster of a journey!
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