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Posts Tagged ‘JME’

Mar 12, 2010 • So many people are sharing deeply personal stories that fill me with admiration at their bravery. They have given me courage to try and share some of my stories too. So, here I go, with no coughing or clearing of throat.

Next fall my son, Patrick, is going to attend the junior college to get his G.E. requirements fulfilled before moving on to a four year college. His epilepsy is under control, but, as all of my Deepwell friends know, it has not been easy and it has required sacrificing normal teenage activities, such as learning to drive. When he was fifteen, he had his first tonic-clonic seizure, which was scary, to say the least. He was diagnosed with Juvenile Myoclonic Epilepsy (JME) and after experimenting with a couple of different drugs, has settled on what works the best and has the least severe side effects, which is not to say there are no side effects—you just have to decide which ones are the least disruptive. Since myoclonic seizures (the most common seizure for people with JME) occur in the early morning, he goes to bed late so that he will wake up mid to late morning. This has been effective, if inconvenient, since we don’t like to leave him alone in the mornings. He went from a straight A student to a C student, due to missing so much school—at least in college he will have options to have a more flexible schedule. My daughter, Allie, is concerned that she might have epilepsy too, since she is fifteen and fifteen is the typical onset of JME. So far, so good, though.

Of course, I am wracked with guilt over all of this, since I have epilepsy and I knew there was a genetic component to it before I had children (my mom had it and my sister has it). Actually, my guilt isn’t as intense as it was three years ago, when Patrick was diagnosed, but it will always be there, to some degree (I am Catholic, after all). It breaks my heart that he has to go through this, but I am thankful it is treatable. He is a practical kid with a good sense of humor and has coped with it better than I have, to be sure.

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