Alysse's story.

Alysse is yet another person who is living with epilepsy. Her story started when she was in her 30's. Please feel free to follow the link to AOL Health and read her interview with them.

Medications Worse Than Seizures?

Medication is often the first line of treatment used in most people who have epilepsy. While some are fortunate enough to have good control of their seizures with the right medication(s), the unwanted side effects are at times, worse than the seizures themselves. The seizures may have stopped but the side effects continue daily.

Side effects can be: extreme mood swings, depression, suicidal ideations, memory impairment, severe nausea, vomiting, stomach pain, weight loss, weight gain, constipation, diarrhea, sleepiness, insomnia, hair loss, tremors, coordination problems, vertigo, infertility, birth defects, muscle pain, back pain, severe rash, life threatening rash, hives, itching, double vision, blurred vision, loss of peripheral vision, loss of sight, uncontrollable eye movements, lazy eye, ear pain, sore throat, cough, fever, irregular heart beat, chest pain, and water retention are just a few of the most frequent side effects that people deal with.

Most of the government funding provided for epilepsy research has been used for improving the anti seizure medications that are currently on the market. The newer anti-seizure medicines, while still presenting risk of side effects, are a little more "user friendly" than the older anti-seizure medicines that have been on the market for years.

Epilepsy Foundation

When we first found out Kaitlin had a seizure one of the first things I did was look up everything I could find on seizures. One of the absolute greatest sources of information then and now came from the epilepsy foundation.

Kaitlin's Cauze cannot do a blog-a-thon without giving mention to this wonderful non-profit organization. Please feel free to click the link and find out what they do, and can do, for you... Epilepsy Foundation

Wear A Purple Ribbon

November is a special month for my family, but not for the reasons you might think. Not for birthdays or anniversaries, not for big celebrations, not for family reunions. November is Epilepsy Awareness Month. This is an important time for my family because my youngest son, Matthew, was diagnosed with epilepsy when he was two years old.

I have been a special education teacher for over ten years, so I have worked with students who have had a variety of diagnoses, including seizure disorders.I have comforted students as they were seizing, I have ridden in the ambulance to the hospital with students after 20 minute seizures. With all of this experience behind me, no one could have prepared me for October 26, 2008... The day our lives changed.

Matt had his first grand mal seizure during his mid afternoon nap. For some reason, and by the grace of God, I was laying on his bed with him when it happened. His body stiffened, his eyes rolled back, and he groaned. My logical mind knew what was happening...a seizure...put him on his side...call for Roger...call 911. Luckily, it seemed to override my heart at the time and everything went as if from a textbook. The ambulance crew was amazed at how calm I was as they put the oxygen mask on Matt's tiny face. I smiled and muddled through the ride to the hospital. Once at the hospital, Matt was recovering nicely, but he was exhausted. While he slept and my husband and oldest son waited with him, I went into the bathroom. The realization of what was happening swelled up inside me and rushed out as a flood of tears. Sometimes I believe that my training allows me to "know too much". I knew what was probably happening. I knew that he would be referred to a neurologist, I knew he would probably take anti seizure medications that are hard on the bodies of young children....but wait, maybe I am getting ahead of myself! Maybe it was just a fluke! I mean, toddlers are known to have seizures for no apparent reason and never have another one! Yes, I am getting ahead of myself. It was an isolated event. Nothing more, nothing less. Whew!

But that was not to be. The seizures continued, sometimes five to six a day, and after consultation with a brilliant neurologist, a portable EEG, and an MRI, Matt was diagnosed with Generalized Epilepsy, which is simply a seizure disorder with no apparent cause. We have been through several medication changes, numerous trips to the emergency room, and more medication changes. I left my job as a teacher during the first few months after Matt's diagnosis because Matt's seizures were so unpredictable and frequent at that time. I will never regret that decision. It was the best decision I have ever made. There have been many challenges other than medications. We always have to accompany Matt to any community activities just in case he has a seizure. He is restricted in terms of what he can and cannot do on the playground at school. We have a difficult time finding babysitters. We have to go for blood work once a month. However, there have also been positive changes as well. My family was always a source of strength for me, but after this,they became even more than that. We have a bond that transcends time, tragedy, and Epilepsy! Matt's older brother DJ is a caring and strong person who, because of his experience with Matt, is able to remain calm in the most volatile situations. My husband is the rock that I lean on and I know he feels the same. There is a trust between all of us that is immeasurable. The turmoil of the past two years has also brought us all back to God. We thank the good Lord every day for our family. We thank God that Matt has been able to endure all of the trips to the hospital, medications, doctor's visits and bloodwork. We thank God for our friends and their support. We have also learned through this experience exactly who our friends are. We know who can be there for support during the good and bad times as well as those, and yes there were many, who are incapable of providing support. Times like this let you know who you can trust and who you can rely on.

Well, two years have passed and I have to say that things have changed dramatically. Matt has been seizure free for over 9 months now. The medication he takes now has proven to be very effective in controlling his seizures! He is a vibrant, loving, hyper little boy who loves life. He is so curious about the world around him and thinks that his brother is the coolest person on the planet! He loves dumptrucks and loves to dance. He has an amazing sense of humor and loves knock knock jokes! He goes to preschool and is learning so much. His neurologist appointments are farther between. I look at both of my sons and cannot believe that God has granted me all of these wonderful blessings. At the same time, Roger and I are always vigilant for any telltale signs of seizure activity. We continue to carry the "emergency backpack" wherever we go. We still have the emergency medication in the kitchen cabinet. You cannot let down your guard, no matter what! Matt's safety and health depend on our vigilance and we will not let him down. But, we can also be happy in the moment and feel blessed for the wonderful family and great times that we have.

So, when this November comes around, Matt and I will be out and about in town, giving out purple ribbons and brochures-many thanks to the Danny Did Foundation- for epilepsy awareness. We wear ours with pride, knowing that for now, we are a success story. We also wear them to acknowledge the 60 million people throughout the world who live each day with epilepsy. We wear them as a reminder that epilepsy research is underfunded. We wear them to celebrate the connections made with other families who also have experienced living with epilepsy. We wear them to acknowledge the kind, friendly, and brilliant medical personnel who devote so much time to treating their patients with dignity. In our house, we celebrate November as the turning of the fall leaves, the smell of cooked apples, the taste of Thanksgiving turkey, and the ability to live another blessed day seizure free!

Many blessings to all!


Lori, Roger, DJ and Matt Allen


Belchertown, MA

AND...We Have Launch...

Well, as promised, Kaitlin’s Cauze will be doing a blog-a-thon for the entire month of November, which just in case you didn’t know, is Epilepsy Awareness Month.

I was going to post Kaitlin’s story for today, since it is HER blog; but decided instead to use the picture to create the story.

The picture shows Kaitlin riding a roller coaster at Hershey Park. The roller coaster is Storm Runner, and it launches you from 0 to 72 mph in just 2 seconds flat. Crazy huh? 2 seconds!? Think about it.... 2 seconds doesn’t seem like a great amount of time, but apparently it’s enough time to send your body hurling to 72 miles per hour, (leaving your heart behind at the station, I might add) therefore; 2 seconds is plenty enough time to change your circumstances.

...Kaitlin closed her eyes to take a nap and WHAM the seizure came… Totally unsuspected. Totally by surprise. In less than 2 seconds, in the blink of an eye, our lives changed…

To some extent we are still reeling from the changes epilepsy has imposed on our lives. People who tell you that epilepsy doesn’t change how they live are deceiving you. Fact- epilepsy may not change who you are (although in a lot of situations, it really does) but it most definitely, without a doubt, changes how you live.

For our family, epilepsy made my husband and I re-evaluate what was truly important in our lives. It made us communicate with one another and it united us as a team against epilepsy. It also got us back in church where we’ve spent a lot of time on our knees thanking God that Kaitlin seems to be responding well to treatment and asking Him to lead us to where He wants us to be in the world of advocacy.

It also means that as parents, we are forced to make decisions for Kaitlin that under normal circumstances would not even warrant a discussion…

For example- under normal circumstances we wouldn’t think twice of sending Kaitlin to the pool with a friend. However, now we are forced to pay attention to the parent that will also be accompanying them. We have to be able to trust the friend and the parent to keep a watchful eye on Kaitlin at all times.

Other examples of discussions have been whether or not to allow Kaitlin to attend birthday parties where circumstances may not be the greatest for someone prone to seizures; or whether to allow her to move up to the middle school class at our church, LCBC. Technically, Kaitlin should have moved up last year, but since all of her "besties" are a year younger than her, we allowed her to stay down in 56 with them. Our thinking was, and still is, in a church the size of LCBC, where an approximate 7,000 people gather each weekend, Kaitlin could easily be "lost" in the crowd. Her friends know she has a seizure disorder and they know how to respond if she has one. I feel much more comfortable knowing she has her little posse with her watching over her, and Kaitlin is thrilled to have one more year with Chad, the leader of 56. It's a win:win.

Even a trip to an amusement park has warranted some discussions. Do we allow Kaitlin and her friends to ride the Ferris Wheel alone, or does an adult go? People not in our situation would quickly tell us to let her go and that she’ll be fine. These are the people that probably don’t quite realize that a complex partial at 100 feet in the air could have devastating results.

Often times for us, the fine line between being overly protective versus using common sense seems pretty black and white. For those who don’t understand the impact of epilepsy, the line, to them, is blurry. They just don’t seem to grasp that a seizure isn’t just a seizure.

Yes, there are associated risks with everything we do in life. For instance, Kaitlin could have a seizure while eating and choke. Does this mean we don't let her eat? Or that we mince her food? Of course not. Again, there is a balance that we try to find. We strive to use common sense when making decisions with regards to Kaitlin's activities.

We all know that standing under a tree during a thunderstorm is probably not the best idea- because there is a risk of being struck by lightning. The chances of it actually occurring may be small, but it's still a risk many of us are not willing to take. Therefore we practice common sense.

The same can be said for us when facing decisions like the Ferris Wheel. Yes, the chances of Kaitlin having a seizure while being 100 feet in the air, in a carriage that has no latches on the entry gate (I checked... these gates can open during the ride...) are probably very slim. But, the risk is still there. So, as parents we have to weigh the possible risks associated with the event and come up with a way to modify the situation, when possible. In this case we let Kaitlin ride the Ferris Wheel with her friends, but we re-iterated to her friends what to do should a seizure occur in mid-air.

We don’t want to let epilepsy dictate how we live our lives but sometimes we just don’t have a choice… It is what it is, but thank God it is only what it is. We realize that even with epilepsy, it could be so much worse...

Please take a few minutes to get seizure smart, stop by Kailin's webpage: Kaitlins Cauze. While you're there please sign her guestbook and let her know you stopped by...