Regan’s Story

My son was born via C Section on October 18th, 2017. Everything seemed ok, but I did notice that he would get red and stiff for a few seconds, then it would go away. My husband did not see it so I couldn’t properly show him while we were still at the hospital. We were only home for a day, when he started with tonic-clonic seizures. My husband works for Natus Medical and installs and works with EEG machines. He has seen many seizures, so I knew when I looked at his face that this was serious. We took a video of the seizure and sent it to a tech at the Children’s Hospital in Philadelphia. She agreed with my husband, and we rushed him to the hospital. They admitted him but did not take him from the ER to his room until 3 am. My husband sent me home because I was still recovering from a C section and I was in shock. My Dad held my hand the entire ride home. The next morning I rushed back to the hospital and my husband told me Regan had several seizures and one of them caused him to code. My husband did not want to tell me that over the phone and cause me to panic, he wanted me to see that he was ok. Regan was hooked up to the EEG machine, wires everywhere, and an IV line. They took him for an MRI which we both went into the room with him. Prior to his MRI he seized. I just stood there and cried and could not believe this was happening. I felt like I was in my worst nightmare. We got through his MRI, they sent him back to the PICU and he seized again and coded. They had to bag my 3-day old son and I lost it. I had to be escorted out of the room. His seizures were managed with phenobarb and Keppra. He was in the hospital for a week, and thankfully he is weaned off of his meds and has had no seizures since. He was diagnosed with BFNS, a de novo cause, neither I nor my husband carry the gene. KCNQ2 is scary and you never know if the seizures will return or not. I hope they never will.