Purple Day and Why It's Important!!

I know it's been a long time since I last wrote, but honestly, there hasn't been much to write about. All winter, I was stressed and sleepless, but spring is here now, and with it, I'm seeing improvements in my health and outlook.

I'm especially excited about a universal event occurring tomorrow. It's known as Purple Day. http://www.purpleday.org/. This is an international awareness day for epilepsy. Since I have always had epilepsy, I think it's important to spread the word, but it's not about me anymore. I know too many people who struggle every single day for some semblance of normalcy in their lives, but because of seizures, medication effects, or damage to the brain from the epilepsy, they are unable to know what it's like to do even simple things for themselves without being at risk of severe injury--or even death. 

Yes, people have died from epilepsy. I know...I hadn't thought much about it myself until a few years ago. To me, seizures were a disappointment and always made me feel like crap--physically and emotionally--for a few days, but I always knew I'd be safe during them, I'd recover, and I'd walk on. They were merely a nuisance. I have several minutes of signs of an impending seizure, and they were almost always at night. Even when I was alone during them--a very rare occurrence--I could always get into the middle of the bed or even onto the floor. Surprisingly, many people don't have that ability. They get little, or even no warning before it strikes. This can result in any number of injuries. Death can also result from falls, injury to the head, or even cessation of breathing.

Another thing most people who don't deal with epilepsy don't know about it is that there are many types of seizures, and even types of epilepsy. I know many, many patients and caregivers who are far more educated than I am on the various types of both epilepsy and seizures themselves.

My best friend found out the hardest way possible when her infant son was diagnosed with a rare type that is even life-threatening. It's Infantile Spasms http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1464162/, which actually don't look like much, but they usually occur in large clusters that damage the developing brain. Jimmie was, at one point, experiencing dozens per day, and they looked as if he were wiping his eyes. Today, he is almost six years old, but he's like a baby, unable to talk or convey his needs in any intelligible manner. When he was 20 months old, his IS progressed to the dreaded Lennox-Gastaut Syndrome http://en.wikipedia.org/wiki/Lennox%E2%80%93Gastaut_syndrome, which occurs in many IS children and is even more severe and harder to control. Thank God, Jimmie is responding well now to a multiple medication regimen and was actually seizure-free for over a year until he had a recent setback when withdrawing from one of his medications. He has also recently been diagnosed with autism, which Lacy and I both knew he would be, but now, we're hoping he can finally get some necessary services. He has all the same needs as a young toddler, even though his peers have learned how to tie their shoes and pretend with multiple playmates.

Sadly, although Lacy had some experience and knowledge of epilepsy, mine was about all she had to go on, and the biggest problem I'd had was medication effects. She met me about a year after I had withdrawn from the culprit and switched to one I knew worked better, but I still had some minor issues with it, and she'd only seen a single "grand mal" (or "tonic/clonic," as they are now often called) http://en.wikipedia.org/wiki/Tonic%E2%80%93clonic_seizure. In no way did it prepare her for Jimmie's struggle, although she knew to call me when he'd had his first spasms. She and I had met in college, and she'd seen me graduate (right next to her in line!). She knew I drove, was married, and had a child. In fact, when I had the one seizure she'd seen, I was pregnant with my second child. She'd seen a few of my smaller seizures, too--which I didn't even know were seizures until after my daughter was born, even though I'd always had them.

Would you recognize a seizure if you saw one? How about a Simple Partial http://en.wikipedia.org/wiki/Simple_partial_seizure (my smaller seizures, which are almost invisible to anyone who doesn't know what they're looking for)? If someone wandered, dazed and glassy-eyed, into the street, possibly making a chewing motion, even though they aren't eating, would you think it was a seizure? This is why Epilepsy Awareness is so important, too.

Another big reason to be aware of epilepsy is that the treatment, for some of us, is even worse than the seizures themselves. All anti-epileptic drugs (AEDs) can, and often do, have serious side effects. It's not uncommon to have concentration and/or memory problems from them. They are also known to result in potentially severe nutritional issues, such as vitamin D or B6 deficiency, and a common complaint is fatigue or "spaciness."

Like autism, epilepsy comes in all degrees and types. I am so mildly affected that no one would know unless I told them. Others have seizures of some type every day, and of course, there's everyone in-between. About half of us will never know the cause of our epilepsy. Some have many triggers, or things that set seizures off. A cause may be lack of oxygen to the brain from birth; bleeding in the brain from prematurity, injury, or stroke; or several other things. Common triggers are things like bright, flickering lights; sleep disturbances; hormonal changes; dietary sensitivities; illness (especially with fever); missing medication doses, or even season/weather changes. For a fair number of us, trigger avoidance alone can give excellent seizure control. For others, trigger avoidance along with medication gives us complete control, even of triggers we can't avoid, but for many, even avoiding triggers and taking medications doesn't help much. Some resort to surgery, where the origin of the seizure activity, such as a temporal lobe, is removed, and some achieve much better control as a result, but many have to stay on medications and may even experience frequent seizures, although the surgery can often reduce the number of seizures, or their severity/duration. Others find that a Vagus Nerve Stimulator (VNS) http://en.wikipedia.org/wiki/Vagus_nerve_stimulation, which works something like a heart pacemaker, helps them. For those for whom surgery is not an option, special diets, such as ketogenic (very high fat, no sugar) or gluten-free (avoidance of wheat and wheat products, barley, oats, and rye) are possible options. Others find that avoiding artificial sweeteners, dyes, or preservatives helps them have better seizure control. The hardest part of managing epilepsy can be identifying and avoiding triggers, or it may be remembering to take the medication as prescribed, especially if more than one medication is necessary, or several doses have to be taken throughout the day. In any case, it can be very complicated to manage.

It's also very important to be informed about recognizing epilepsy and various types of seizures so you know what--and what not--to do. Never, ever force anything into the mouth of someone having a grand mal/tonic clonic seizure. Teeth can be broken and even swallowed. The tongue cannot be swallowed. It may be bitten badly, but it will heal. Do not put your fingers/hands into the person's mouth or restrain them in any way unless they are in imminent danger of death or serious injury from falling from a height, walking into a busy street, etc. You can be badly hurt! Our movements are involuntary, and we don't want to hurt you, but during a seizure, anything can happen, so be calm, move any hard objects, loosen ties or scarves around the neck, and call 911 for any seizure over ten minutes long, if any serious injury is present, or if the patient is diabetic or pregnant.

So, please wear purple tomorrow in honor of anyone you know who lives with epilepsy or has died as a result of it. Epilepsy affects a shocking number of people--about as many as autism does--yet, like autism (which can also involve epilepsy), it is so sadly misunderstood. People who have epilepsy are just like anyone else; they just want to be loved and accepted for who they are. Thank you! :)

Five years ago today...

Five years ago today, my best friend had her first child, a beautiful baby boy. He was named James William, for both his grandfathers, and I knew he would touch my life, but it makes me breathless to think back on just how much he has.

To all appearances, "Jimmie" seemed quite healthy. He was basically full-term, a decent size and weight, and he seemed to be thriving. Then one night, I got a call from Lacy that stopped my heart. Jimmie was having some strange episodes, and as she described them, I grew sick. I was so afraid to tell her what I thought, but she had called me for advice and wanted to know: were they seizures?

I advised her to call the pediatrician the next morning and demand that 4 1/2 month old Jimmie be seen right away. She called later to tell me that she had an appointment scheduled with a pediatric neurologist who would confirm my greatest fear. Jimmie had Infantile Spasms, a serious form of childhood epilepsy that often results in brain damage.

Many treatments would follow, and for a time, they seemed to be successful at first, but then he would relapse, and his seizures began to change. They went from the "wiping his eyes" type movement I saw (several times a day) when I visited a few months later, to more obvious seizure-type movements and behaviors. Several combinations of medications were attempted, including ACTH, a steroid often used to treat them that has had some success, but at about 20 months old, Jimmie's diagnosis would advance to Lennox-Gastaut Syndrome, which meant his epilepsy had become intractable and was not responding well to medications.

Finally, late last fall, he was found to have had a growth spurt and was given a dose increase of one of his medications. Since then, he has had no known seizures. That's the good news. The bad is that all the seizure activity has resulted in significant cognitive damage. He is slowly starting to advance in development again, although his 2 1/2 year-old brother, Charlie, is way ahead of him.

I was actually the one to introduce Lacy to epilepsy in the scariest way possible, when she witnessed one of my grand mal/tonic clonic seizures early in my pregnancy with my son, but in comparison, my epilepsy, also from infancy, has been amazingly uncomplicated and easy to control. It has even made me complacent, I'm sorry to say, and even when I had two seizures in the past 2 1/2 years, I was able to blame them on stupid acts on my part and walk on. Sure, I have known, at least on a casual level, that most people's epilepsy is more complicated than mine, but knowing Jimmie and his struggle has been very humbling. He has taught me all about courage and living for the moment, and I am so proud to say I look up to him as an example of how to live.

Happy, happy fifth birthday, sweet Jimmie!!!! I can't wait to see you, Charlie, and Mommy and Daddy!! xxxxoooo<3<3<3<3 LIZ

Purple Day, and My Best Friend's Birthday

Lacy has been my best friend...forever. It's actually been just over 20 years, but honestly, I can't remember much about my life before I knew her. We have been through so much together.

We met in college, when I was recovering emotionally from the scariest medical mess of my life. I'd had a reaction to an epilepsy medication for over 2 1/2 years until I finally figured it out for myself and insisted on being taken off of it. She was there every step, although she essentially had to take my word for it all, since it had occurred before we met, and I hope I have done even ten percent for her what she's done for me.

I gave Lacy a crash course in epilepsy and seizure management when she lived with me a few years after graduation. My daughter was a toddler then, and I had just learned I was pregnant again. I had just returned home from the store as she walked in from work, and we were talking as she helped me put everything away.

Suddenly, I felt my familiar aura roll through me, and I suddenly realized this one was for real. I was about to have a seizure on the hard kitchen floor. She sprang into action, trying to close the dishwasher and keep my daughter away from me so she wouldn't get hurt. Since I was pregnant, too, I needed immediate medical attention.

How she survived all of that and didn't run away screaming, I'll never know. She did move out soon afterward, but only because she'd finally saved enough to get her own place.

We lived together for a total of about a year and a half before we had to move way up north, and she found other roommates. We stayed in close touch, and she eventually moved to the midwest and married. I sang a solo at her wedding, and it scared the hell out of me, but I was so glad I could help make her day special.

Lacy had always planned to have children, and since she was 35 when she and David married, she had to start trying to conceive soon. It would be difficult, and she ultimately required medical intervention, but she finally had a breathtakingly beautiful baby boy on June 23, 2006.

Just a few months after Jimmie was born, she called me late at night and told me she was scared that he might be having seizures. She and I had also co-founded a support organization in college, so she had learned a lot about epilepsy, including the fact that there were many different types of seizures. I advised her to call her pediatrician immediately the next morning and insist that Jimmie be seen right away. I couldn't make myself say that they sounded like infantile spasms, which I knew could indicate a very serious type of childhood epilepsy, but she would find out quickly for herself.

Jimmie would undergo several combinations of medications to achieve control, including B6 and ACTH, which is normally used to treat IS, but the control was short-lived, and his IS developed into the dreaded Lennox-Gastaut Syndrome. LGS is an intractable form of epilepsy that results in neurological damage. Although finally controlled for the past 4 1/2 months, Jimmie has severe developmental delay and is much like a one-year-old. He also now has a two-year-old brother, Charlie, who is learning to be a help to his mommy.

Lacy's birthday is tomorrow. Tomorrow is also Purple Day around the world, to raise awareness for epilepsy. Neither she nor I could ever have dreamed that she would need to have in-depth knowledge of epilepsy after she moved out of my house, and I feel like I can do so little, especially being so far away, but I do try to encourage her and cheer her and Jimmie on as he makes every accomplishment, how ever small it may be...and I plan to honor him and others all over the world tomorrow, March 26, by wearing purple...for her birthday, World Epilepsy Awareness Day. Please join me!!