Wednesday, March 26, 2014

Puberty is Hard Enough Without Epilepsy

It's only been about 2 years since I first heard the word "seizure" applied to my son.  At the time, he was experiencing phantom smells, tingling/wet sensations on half of his body, and a hand that would twitch uncontrollably.  None of these things occurred together, but he was having episodes of one type or another once or twice a day.  They were weird and slightly disturbing, but he had just survived bacterial meningitis...we expected some effects.  I, finally, mentioned what was happening to a doctor and he said he thought Bub might be experiencing "focal" seizures.  It was nearly a year later, that our neurologist first used the word "epilepsy" to describe Bub's seizures.  He has had a few generalized tonic-clonic seizures, absence seizures, and myoclonic seizures, but typically, he has "simple partial seizures."  Simple Partial Seizures leave the person alert and able to remember what happened.  The seizures themselves can affect the senses (Bub's phantom smells, for example, or the tingling) or cause rhythmic jerking of one limb, part of a limb, or the face.  They may last a few seconds or several minutes.  Usually they fade away on their own, but, sometimes, they can progress into a generalized seizure that effects the entire body and impairs consciousness. 

Annually, people all over the world wear purple on March 26th to promote Epilepsy Awareness.  Today is the first Purple Day our family has participated in, but it won't be our last.  Even though I can't get him to wear purple (apparently it isn't a manly color), I wear purple for Bub.  This is why:

*Lab Rat Status-  Having epilepsy means that Bub has to travel 3 hours one way several times a year to be poked & prodded, hooked up to or slid into machines, and see his pediatric neurologist.  He has to get blood drawn (locally) periodically and any time there are any changes to his medication.  We know every phlebotomist in town and Bub can tell them where and how to best draw on him. 

*Medication Malfunction-  There are many types of seizures and many types of drugs used to treat them.  Unfortunately, it seems that there is also a good deal of trial and error associated with finding the best medicine for each individual.  The first medicine we tried Bub on was a nightmare.  Not only did it not decrease his seizure activity (he was having 10-20 a day at that point...mostly simple partial), but it caused serious side-effects.  Suddenly, Bub was having seizures AND had riding an emotional rollercoaster that in one day could take him through despair, rage, anxiety, giddiness, hostility, and deep sadness.  The kicker with seizure meds is that you can't just pull a kid off of them...even when they seem to have suddenly gone off the deep end.  We had to wean Bub off of that medicine for an entire month while gradually adding in a different medication.  Fortunately, the second medication worked like a champ with no loony-bin side effect!  Unfortunately, Bub is still growing, which means that periodically he starts having more seizures again...which means that we head back to Tulsa to the neurologist, up his dose, and have at least one lab draw to check his levels.  It's very hard to keep a teenage boy at the right level on seizure meds because they grow like weeds.  Over the last year, we literally had to quadruple Bub's dosage to try to keep up with his growth spurt!

*Medication Malfunction (Type 2)-  When Bub was going through that terrible experience with his first seizure medication, his school was VERY understanding.  There were days that I had to go pick him up because he couldn't quit crying or because he couldn't control his rage.  The school really tried to be accommodating and understanding, but it is a school...there has to be order!  It killed me as a parent feeling like the other parents saw my kid as a problem.  I knew that a fair number of parents (and probably staff, too)  were interpreting Bub's behavior as his PERSONALITY and his CHARACTER rather than a medical side effect that was beyond his control.  Yes, he was out of control.  But it was awful for him, too.  It broke my heart when I picked him up from school one day and he said, "It's like I can't control my body OR my emotions!"  Over a year later, it still ruffles my feathers when people comment on how much Bub has "improved."  He hasn't so much "improved" as returned to normal!  (By the way, I'm under no delusions that my son exhibits exemplary behavior aside from medication side effects...) I just hate it that people still judge him based on a 3 month period of his life and circumstances beyond his control. 

*Loss of Control- Yes, loss of control during a seizure, but there is SO much more.  Not knowing if you will be able to take driver's ed with everyone else your age or if you'll even be able to get a license.  It's not the not being able to be in the military or law enforcement, it's the loss of the CHOICE that's most upsetting.  People with epilepsy have a lot of choices that they just aren't going to get to make.

*Triggers, triggers everywhere-  Police cars.  Ambulances.  Movies.  Fluorescent lighting that flickers. Strobe lights.  Flashlights being turned off & on or waved around.  Flipping the lights off & on (and, isn't that the universal signal for "quiet" in classroom situations?).  Stress.  iPhones set to strobe flash with a text or call.  Sleep deprivation.  Blinking pop up ads. Being out of breath.  A ceiling fan and a light.  Sunlight through trees, slats, or reflecting off of a moving surface.  A million different light up toys.  All of these things can trigger seizures for my son.  I'm not sure people without epilepsy can even understand what it's like to walk through the world every day just trying to avoid all of the things that can bring on a seizure.

*Normal Isn't Normal-  You know what's normal for Bub?  Medication at certain times, weird feelings, auras, having to leave in the middle of a movie because his hand has developed a mind of its own, if he kicks the wall in his sleep his mother comes charging in and turns on the light, trying to wash EEG glue out of his hair, chopping pills in halves or quarters, requesting a certain person at the lab, wondering if the neurologist called, knowing what his "level" is, being accused of not paying attention when he has an absence seizure, trying to find a seat at the theater that isn't too close to the screen and will be an easy exit, being on a first name basis with the EEG, CT, & PET technicians...

I wear purple because my boy is affected by epilepsy every day in a hundred different ways but you'll probably never see it.  I wear purple because so many people know so little about epilepsy.  I wear purple because I am constantly amazed at how Bub can roll with all that life throws at him.  I wear purple because there is no cure for epilepsy.

I wear purple for Bub.