Meet Bennett - An Awesome Doose Warrior


Mother has Juvenile Myoclonic Epilepsy. Bennett was exposed to Valproic Acid during pregnancy. Rough birth, ICU for 1 week. Then, generally slower to develop, first giggles at 6 months. Around 19 Months recognized first short absences. First diagnosed with myoclonic epilepsy, later also with absences; we were prescribed Ethosuximide. Every now and then additional absences observed as well as very poor sleep. But nothing indicated a severe form of epilepsy. Doctors were optimistic that things would be outgrown shortly. But then, all of a sudden at age 39 months, Bennett had his first atypical absence status epilepticus. Turned blue as well. Lots of crazy seizures followed in the next 5 months: atomic, tonic, tonic-colonic, myoclonics, absences – you name it. We even had a close SUDEP experience. We knew Bennett’s heartbeat slowed down tremendously during these big seizures, so we tracked it. While he was at one hospital stay he had an asystoly. He heart stopped beating during a seizure. Fortunately, he was connected to the EEG during sleep so the nurse was right there and doctors got him back. Shortly after we got a pacemaker that turns itself on as needed. Medications didn’t seem to help and the more we tried the worse it got. Especially Valproic Acid was terrible for us. Lamictal improved the situation for a while (or maybe the Craziest time of seizures was just over), but our son’s behavior got worse and worse. Attention span is zero! Started MAD in September 2019 (56 months) and have not had a severe seizure since. Stopped Orfiril long and Lamictal since then. Tried to wean Ethosuximid but saw more absences and myos again during the day. We were day-time seizure-free for a while, but the night time EEG looks pretty bad at the moment. Just started to add Briviact. Still trying to find a cure for the myoclonics and occasional absences. Also: we need to find a way to calm this kid down. We now have an ADHD diagnosis, but I am not sure if it isn’t the meds or the seizures that cause him to be so overly active and unfocused. I am a bit afraid of the future and don’t know what school type to choose…


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