Life Interuppted

My apologies for disappearing from all of you.  Life has a way of interrupting our best intentions.  I became busy with other endeavors.  The end result was that I completely stopped all advocacy work and concentrated on just being Kaitlin.  I did have another blog, but I recently deleted it and decided that if I could ever figure out how to get back into this one, I'd just start using this again.  This was my very first blog and so much work went into it that I felt it just needed to be revived.  I combined the name of my other blog with the content of this blog just because I liked aspects of both.

To catch you all up quickly- I am officially old enough to vote :)  I've been living with epilepsy for almost seven years and have been involved with so many amazing non-profit organizations.  My goal was to always help bring epilepsy out of the shadows, to educate and empower.  I've gotten to work with The Epilepsy Foundation of Western/Central PA, The Chelsea Hutchison Foundation, and The Danny Did Foundation.  I also got to launch my own little non-profit- Kaitlin's Cauze. 

Through all of my advocacy work, I learned a lot, and I can only hope that others have learned from me as well.  My journey with epilepsy was an open book, and I had no problem sharing the good and the bad so people would understand how epilepsy can impact an individual's life.

Thankfully, my seizures are now 100% controlled.  I have gone over four years without having a tonic clonic or complex partial seizure, and my last simple partial was well over a year ago.  Since my seizures are so well controlled, Captain "Jack" Sparrow, my seizure alert/response service dog, has entered into full retirement and is mostly enjoying life as a normal dog (I say mostly, because he still gives me sad puppy dog eyes when I leave the house without him). We also disconnected my EMFIT monitor.

I recently passed my driver's test and am now a licensed driver.  It was a slow process because we wanted to make sure it was safe for me to drive.  For that reason, we actually waited until I was 17 to get my permit- which required my neurologist to sign off on medical papers and be approved by the medical advisers with the Department of Transportation. Learning how to drive took 11 months because the side effects from my medication were making me too tired to safely be behind the wheel.  Earlier this year, my neurologist and I made the decision to decrease my Keppra to see if the side effects would decrease.  Fortunately they did, and I didn't have any breakthrough seizures from lowering the dose- during that period I didn't drive at all until we were certain I would be okay with the decrease.

Last April I began working at an amusement park as a ride operator.  I love my job and have enjoyed meeting new people.  My body has been able to handle the stress of the hot summer days and long working hours (sometimes up to 14 hour days) with no signs of seizure activity.  I'm looking forward to the slower pace of the fall/winter season and having the time to get to know my coworkers a little better.

I graduated in June but so far, have no future plans for college.  I'm unsure of what I'd like to do with my life, so I'm taking some time off to consider my options.  For now, it's just been fun to enjoy a normal life without seizures and medication side effects- it's the first time in seven years that I've had this opportunity so I kind of feel like I have a lot of time to make up for.

I promise I'll try to do better with my blog and being a better voice within the epilepsy community.  I've been given this amazing opportunity to be seizure free and I think it's important to help advocate for others so they can have this same opportunity.

~Kaitlin

Texting All Teens!!!!

Are you tired of your parents nagging you about taking your medicine?  Are you wanting to take more control of YOUR epilepsy?  Do you like texting?

If you answered yes to any of the above questions, READ ON...

The Epilepsy Foundation has made it possible, through funding from the Centers for Disease Control,  for a texting service to be implemented for teenagers with epilepsy.  The program, called Care Epilepsy, is a text messaging support that is availabe to teenagers with epilepsy.  It is designed to remind you to take your seizure medication and will also send motivational messages via texts, to help you stay positive and help empower you to take control of your epilepsy.

If you would like more information please contact:

Temi Aregbesola at taregbesola@efa.org or Jody Kakacek at jkakacek@efa.org

You can also call: 301-918-3478 or 301-918-3722



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.

Kaitlin's Cauze is a WINNING team!

Dear friends of Kaitlin’s Cauze.

I just wanted to take this time to respond to Epilepsy Awareness Month and Kaitlin’s efforts to spread awareness. I have had the pleasure of watching and reading as all of this evolved over the past year and feel so good that it has reached the point it is today. I have learned very much from reading this blog and now the web page and even facebook posts. This has truly been an enlightening experience for me.

First of all let me introduce myself, my name is Tony Elhajj. I have known Kim for the past 3 years when she was first assigned to my daughter’s case to take over as her nurse. My daughter has Rett Syndrome which involves seizures as well as many other impairments. My first impression of Kim was, here is a person who will make a difference and get the job done.

I would have expected nothing less then what she has put together for epilepsy when her own daughter was diagnosed. The information posted here comes from the heart and shows a true passion for dealing with this disorder. Kim not only researched information for herself and her daughter but felt the need to share all this valuable information with as many others as possible. She chooses to do this through a blog and web page. The design and creativity of it all makes the readers of this information comfortable and willing to read more. The information is well thought out and intended to inspire and raise awareness. Someday, someone will find a cure and maybe this site will lead that one person that finds that cure.

In my own personal battle for a cure for Rett Syndrome, I find that we as parents of children affected with diseases MUST lead the way to finding the cure. If not us, then who! We are the biggest advocates for our children. If no one will listen then we will make them listen. We will find a cure and hopefully we will do it quickly.

I have been on many teams in my life. Some were championship teams, some not as good but ALL had one thing in common. Determination! I see a championship team here. I feel the passion. I can’t tell any of you apart because you all have purple ribbons with a name written on the ribbon in white… you are all fighting the same battle. You are united and believe!! This is how it will get done! Let’s bring epilepsy out from the shadows … For the sake of our kids!

You Gotta Have Hope!

Hello! My name is Heather Jackson, warrior mom to Zaki (pronounced like sky). We are trying to turn the White House purple on March 26th for Purple Day. I want to talk to you about epilepsy... and hope!

Abstract from my journal:

On a crisp evening a little over 7 years ago, an intruder came into my home. He snuck in unannounced, as intruders infamously do, and began to steal from my family. At first it was not in an obious way. He didn't take the flat screen TV or my jewelry. He took something much more valuable! In September of 2003 I thought that I had securely fastened my doors and windows before having possibly the last peaceful night of sleep since. He came. Secretly. Every time he came he took a little bit of my little boy. He came. He came again. If I could have caught him, I would have put a serious hurt on him and pressed charges! With the amount of damage inflicted, he would have done hard time! But, I couldn't. And it's my son that's done the hard time. The thief was inconspicuous. He kept coming. And he started very slowly stealing away my little angel. He must have found us an easy target and hit full force.

He may have found you, or someone you love as an easy target too. You see this thief is fair. Anyone can develop epilepsy! It has no boundaries, it occurs in all ages, races, and social classes.

I have not so affectionately deemed him the beast. The beast comes and when he does, he leaves ruins behind. He comes whenever he wants.

Our story:

Epilepsy is a phenomenon that is mysteriously secret. There is a stigma that follows the diagnosis of epilepsy. that is why I am here. I am going to obliterate that stigma. And if you will let me, I'll give you a little hope along the way.

My son Zaki is 7 years old and has had seizures since he was 4 months old. Zaki has a rare condition known as Doose Syndrome. Well, at least that is the best fit for him. His onset was much earlier than most of his peers, and most children with his syndrome go into remission within 3 years. The thief stole his development, leaving him with many side effects, not only from the medications, but from the sheer number and force of the seizures. Oh... and autistic tendencies. The likelihood of the seizures leaving after 7 years are slim. (INSERT HOPE) Feeling's AREN'T FACTS! The fact is (1) I don't know if the seizures will stop, I can just as much assume they will as they won't! (2) Circumstances CAN NOT dictate my expectations!

16 anti-epileptic medications have failed him, and all of the alternatie treatments like chiropractic, acupuncture, herbs, supplements, cranial sacral therapy (the best so far), and the ketogenic diet, although not hurting him, have not made the thief leave! Zaki has had hundreds of thousands of seizures, of almost every type that you could imagine. Gosh, if I still stared at the boy and made little tick marks in my ledger, he'd be well over a million I am sure. The situation at many times has been dire. We didn't think he could or would make it. There were times we had to induce a coma like state with emergency drugs to stop the convulsing. So what do you do when it seems like all chances of this going away are gone? What do you do?

Well, I can tell you what I do. What I do is hang on to hope. And I help others do the same. I literally talk to parents all over the world every day whose child is suffering from epilepsy. I don't have the world's definition of hope. That is the desire for something. Get out your scrap paper and write this down, you will need it at some point. You have to add an extra ingredient to the desire, and that is EXPECTATION!! HOPE is the DESIRE + THE EXPECTATION.

I have talked to you a little about epilepsy and I have talked to you about HOPE. Now, what are you going to do?

Eden's Story

I was diagnosed Epilepsy at the age of three or four. How it started we don’t know. But living with it sure hasn’t been easy. It’s been many trips to hospitals for many EEGs done as a kid and still to this day, have some done when needed. In grade school, I wore a helmet. I would be talking and suddenly drop to the floor in the middle of what I would be saying and more often than not spilt my chin open. Same place every time and then I would get up and start talking again right from where I left off. The types of seizures I have include absence seizures, tonic-clonic seizures, and petit mal seizures. The pills I took for my seizures made me drowsy in school, and since I was on a few different kinds, I think that was one of the unwanted side effects. My seizures in school didn’t help make the experience easy or fun. High School wasn’t always that easy. But then who said High School was? I guess I could have found a way to get out there more, but I pretty much kept to myself.

Now driving is a big thing for me. My two older sisters can drive, but me-no. That would not be safe for anyone. I don’t know when a seizure is coming on. At work recently; I was having petit mal seizures on and off all week. I thought, “Well since these are just the little ones I don’t need to tell anyone about these.” I should have, because later on I did land in the hospital because my condition did get worse.

It’s been tough at times, but I’ve been lucky to have help of my family and friends.

Caleb's Story

To start off my story of my son's battle with Epilepsy, I'd have to begin with telling you a little bit about my son.

When my son came into my life on June 15, 2007, it was like I took my first breath right at the same time he did! I call him my little sunshine because that's exactly what he is to me. He brightens up my day no matter what is going on. He can always make me smile and most definitely can always make me laugh! His most favorite thing to do is make other people laugh. He has the warmest heart for a child his age. He honestly seems to care more about others around him than himself and would give the shirt off his back if he thought it would you feel batter at all! One of a kind in my eyes. Even more so now than before his 2nd birthday, which is when our lives changed as we knew .

Caleb had a 2nd great birthday. His party theme was Nemo because he was obsessed with Nemo at the time. We had a pool party which was so much fun. I couldn't believe a whole year went by and my baby was another year older. Later on the in the very same week the last thing I could've ever expected happened.

The day started off just fine and Caleb appeared to be his normal, happy little self. He played with his sister all morning and I decided to put them both down for a nap in the afternoon. Caleb was so tired he didn't put up a fight and went to sleep in his room.

About 30 minutes later, I happened to have been walking by his room when I heard him scream. Of course, I ran in to see what was wrong and found him throwing up. I ran over to him to help him and as he stopped vomiting, his eyes rolled to the back of his head, and his whole body started jerking and shaking. I had no idea what was going with my baby. I had never witnessed a seizure and for some reason...even seeing it happen... it didn't occur to me that he was having a seizure. I held him and just kept calling his name, screaming! Holding him, I could feel he was running a high fever. Thankfully, my husband had just come home from work so he was able to stay with our daughter while I picked Caleb up, got him the car, and rushed him to the ER.

I was a total wreck. In the car on the way there, Caleb kept passing out. He was a total zombie when we got to the hospital. The doctor told me he was in a postictal phase and that his seizure was caused by his high fever.

A seizure?! I can still remember the feeling of my heart sinking. I was completely unclear on what that meant but I knew a seizure wasn't a good thing. It took Caleb 2 hours to come out of his postictal stage and 3 hours before we were able to head home. Needless to say, Caleb didn't leave my sight for the rest of that night. I was immediately on the computer looking up anything and everything I could on seizures to educate myself on what happened. I would say I got my first degree, that night, on seizures.

According to the doctors at the hospital, the seizure happened because of a fever and Caleb most likely would not have any more. 2 days later, Caleb had another seizure....

This time we went to our pediatrician who ran every test possible. Everything came back fine but the seizures were still happening. By this time I was a complete wreck! We were referred to a neurologist and by the second appointment my husband and I were told that Caleb has epilepsy. Again- that sinking feeling in my heart! Again, I had no idea what this meant for my son. And again, I immediately started researching everything I could on epilepsy. I got my PHD in seizures and my medical degree in epilepsy that night!

We've tried Caleb on different medications since then but haven't had much luck. Some tend to make his seizures worse at a certain dosage. Caleb has had a bunch more tests and a few video EEG's but as of yet, no definite diagnosis of where in his brain his seizures are coming from.

We are now looking into other options such as surgery since Caleb isn't responding to the medications.

Caleb is now 3 1/2 and it's been a year and a half since this battle began for us. In that year and a half we've taken a lot of hits but we've gotten right back up again. Caleb has shown me what strength is. I'm in awe of his bravery, even more than that, I'm in awe of his heart!

I started a facebook page for Caleb as a way to reach out to others who are fighting the same fight, to shine a light on childhood epilepsy, and to help spread awareness. For his 3rd birthday an approximate 700 people across the globe wore purple just for Caleb! How heartwarming to know that we are not alone!

On his birthday Caleb also received an EMFIT movement monitor from the Danny Did Foundation. Earlier that week I had received a call from Tom and Mike Stanton saying they read about Caleb and wanted to send a monitor. Up till that point, Caleb had been sleeping with me because I of a scary incident where I walked into Caleb's bedroom one morning and found him pale and his lips blue from lack of oxygen. He had a major seizure in his sleep! I had just read about Danny Stanton's story the week before and honestly believe that little Danny is Caleb's guardian angel. Had it not been for Danny's story and the information on SUDEP, I may not have been so alert to Caleb that morning when he didn't wake up at his usual time!

The support from the 700 people and the Stanton's on Caleb's third birthday made up for his second birthday and was a perfect way to start another year of Caleb's life and put behind us the year we could've never expected.

As mentioned, Caleb's seizures are still not controlled but we have become more aware and alert to his triggers and signs of oncoming seizures. Sadly, so has Caleb. He knows how he feels before a seizure and thankfully lets me know if he can in time. In spite of all the seizures, tests, doctors, and let downs not once has Caleb let Epilepsy hold him down in any way. He still gets out and he plays! He laughs and makes other people laugh just like he did before this all started! We will never give up our fight against Epilepsy, no matter what it akes or how long it takes, we will keep fighting for ansers for Caleb and every other child and adult battling this same disorder.

Epilepsy took the wrong child when it chose my son... he gets his stubborness from me so there is no way I am going to stop fighting my son's battle! I will be right beside him, his Daddy will be right beside him, and his Sissy, Cait, will be right beside him... the whole way! We won't let another moment be lost in our son's/brother's life because of a seizure. Caleb is our HERO!

Rachel Donelson (Epilepsy Advocate and Caleb's Very Proud MOM!)

Noelle, a true hero.

I was diagnosed with Epilepsy at the age of 3 months; just a baby. Around the age of 10 we started looking for service dogs for me. However, I was denied because of my age. By the time I was 12, we had trained my first dog....Scarlett. She saved my life 8 times! Sadly enough we had to put her down because she had begun to have seizures due to a brain tumor. That had to be the hardest thing ever!

When I was 12 years old, I went to my mom and dad and told them that when I grew up and was out of high school I wanted to train service dogs for kids, young adults, and pretty much everyone else that was like me. That's exactly what I did!! I graduated high school in 2008, and about 3 or 4 months later we started up Noelle's Dogs Four Hope. My dream was that nobody ever be denied a dog because of age, severity, or anything else.

I feel very accomplished when I look back and think where I was about a year ago. My company has grown tremendously and I am proud to be the owner. I'm not gonna lie, it's been pretty overwhelming at times. It is completely worth it though; I can't imagine doing anything else with my life. Seeing all the joy on everyone’s faces when they first get their dog or when the dog graduates; and the smile on their faces warms my heart and reminds me of why I opened the company in the first place.

My Dog is currently in training her name is Alice, she can be a pretty big handful at times but she gives me an hour warning before a seizure so I think I can take a little wildness (haha).

For more information on Noelle’s organization, please visit: Noelle's Angel Dogs

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