March is Epilepsy Awareness Month and time for an update on our guy. I am thrilled to announce he has been seizure free for 3 years and is now off medication as the result of two “twitch-free” EEGs a year apart. This is fabulous for him after so many years of enduring numerous seizure types and lethal medication to control them. I am happy to announce he is fine now.
REALLY?When friends and relatives learn that our guy is seizure free/off meds they tell us all we must be so relieved now that he’s better. It’s easy to look at a seizure disorder minus the seizures with rose coloured glasses. Human nature wants everything to be hunky-dory, but this isn’t a fairy tale and it doesn’t have the promise of a fairy tale ending. Because he no longer has alarming visible seizures, others can’t see the residual damage and daily challenges our guy bravely faces.
A syndrome is a combination of symptoms and signs that occur together and characterize a particular abnormality and so it is with myoclonic astatic epilepsy or Doose Syndrome (our guy’s specific albatross.) It consists of numerous and various types of seizures but it also brings with it a number of afflictions secondary to the seizures, some of which may disappear over time (as the seizures currently have) and some of which will be with him forever. That’s the best possible scenario, the worst being a return to seizures and a new struggle to control them, which happens in about 20% of cases.
We walk on eggshells and are often considered pessimistic/overly dramatic. The reality is, our guy is a thoughtful, engaged ten-year-old who participates enthusiastically in daily activities but often falls asleep before dinner because he’s exhausted with trying to keep up with a normal school-day routine. He’s an optimist, willing to give everything a shot but his muscles are weak and he tires easily. Some other components of the syndrome include his tremor and sensory issues. He lacks the ability to focus, has poor impulse control, and difficulty with emotional regulation – a result of impaired executive functioning. Add to that, a global learning disability and a developmental coordination disorder which causes severe fine and gross motor delay and you have an inside view of our outwardly fine little boy. Our smart wonderful guy who once tested as gifted is now challenged.
Years ago, when our guy first became very ill, I had a dream. I was sitting on a beautiful beach with golden sand gazing at a horizon of peaceful ocean. I was holding our guy, pointing at the waves and seagulls. He seemed happy but could no longer speak. Then, on the waves, life rafts appeared but they were drifting away from us. We watched them and gradually the people that we loved began to materialize in the boats. They all floated away – our guy’s parents and brothers, Grandpa, aunties and uncles. Soon they disappeared and we were alone on the beach. I awoke terrified, knowing that there was no life boat for our guy and terrified that I wouldn’t be able to stay with him. The dream haunts me to this day.
Our guy has a small but dedicated group of people who surround him with love, encourage his efforts and cheer his accomplishments. He loves swimming, Taekwondo, cooking and video games and in the past year has become a very good reader. He was gone for a couple of years back then, disappeared, missing in action. We like to think he is slowly catching up, that he will get to where he’s meant to be but it will just take a little longer to get there. Reality is harsh but our guy’s family is allowed rose coloured glasses too.