“I follow the seizure action plan every time.”

Being the primary caregiver for a person with an ever-changing intractable epilepsy is a daunting task. We have to face the challenges of daily seizures, and we also have to work closely with our team of doctors to manage the negative side effects of AED, “controlling” seizures to the best of our ability and how the seizures effect our day-to-day life. Once we get past the complex medication schedule of multiple meds, dosages, and times, we also have the constant worry of seizure emergencies and admissions to the ICU. I am thankful to have a wonderful team of medical professionals that work very closely with me to provide the best care to my son, and we have multiple plans in place to treat seizure emergencies. 2020 was a rough year for everyone, but it was a horrible year for seizure emergencies in our house. We have had to make multiple changes to our seizure action plan.

Our seizure plan was very basic. We give one emergency rescue medication for tonic-clonic seizures that last over 3 minutes, and a different rescue medication for seizure clusters. This care plan was used a few times last year with acceptable results. After our first admission in 2020, a third medicine was added to treat seizure clusters, to hopefully allow me to manage his seizures at home. Four days after we were discharged, we attempted to implement the new rescue medication plan for clusters of more than 5 minutes or for multiple seizures in 3 minutes. The new medicine didn’t work. We ended up back at the ER to stop the non-stop seizures. Ten days later we had my son’s seizures under control again and added a new medication, removing the non-effective one. It worked for a few months but then we found ourselves in yet another seizure crisis. I follow the seizure action plan every time with directions to call on call our doctor between step 3 & 4 to alert them of our situation and let them know we were coming into the ER. It was a long battle but eventually, after 19 long days, the seizures were under control and we were starting our road to recovery. It’s tough caring for a child with severe epilepsy but we never give up,