Thank you to all!!!!

On this last day of Kaitlin’s Cauze’s blog-a-thon, I would like to thank all that have shared your trials in dealing with Epilepsy. I would also like to thank all that have followed and read the stories and hardships we all face when dealing with Epilepsy.

Kaitlin’s goal is to make everyone aware of what we all deal with on a daily basis; the fear and heart break of seizures, the neuro appointments, the medication changes and side effects, we all face, when dealing with seizures. Today she can say that she is well on her way in reaching that goal.

Words can not express how proud I am of both Kaitlin and Kim, in what they are doing. The tenacity of my 2 ladies in bringing Epilepsy out of the shadows fills my heart with pride. When I see Kim and Kait sitting down and writing I see their determination. I see the hope that one day we will have a cure. I see the love of a mother and daughter fighting together for a “cauze”. I see the friendships they have gained in fighting and through these “networks” the cauze is becoming a voice to be reckoned with, together we can make a difference. Keep fighting for funding, keep fighting for awareness, keep fighting for our loved ones. We won’t stop fighting! For us, every month is Epilepsy awareness month. May God bless you all!

Ken Nolte

Kaitlin’s dad & Kim’s husband             

Meet Reagan- a true hero!

This month we have shared some pretty amazing posts from equally amazing people who were kind enough to send us their personal experience with epilepsy.  One important message we have tried to get across is that epilepsy doesn't just affect the person who has the seizure disorder.  It affects the entire family, in some way.

Today's post was going to be about a very brave woman who battles epilepsy on an almost daily basis.  Unfortunately, she hasn't been feeling well and was unable to get her information to me.  When she is feeling better she will send it, and I will post it.  I now believe that epilepsy awareness should be every day of every month and not just in November!

I am choosing to post a video done by her daughter, Reagan. It gives a very strong message.

BoostUp.org "Reagan" Webisode from Tom Drymalski on Vimeo.

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.

Happy Thanksgiving!

I would like to wish everyone a very Happy Thanksgiving.  I also want to share a few things that I am thankful for this year.

First of all, I am thankful for my parents and all they have done and still do for me in this fight against epilepsy.  They are in it to win.

I am also thankful for my new neurologist who takes the time to explain things in a way that my parents are comfortable with (I don't pay attention too much to what she is explaining).  I know my parents were surprised that they called her office on a Monday morning because of my weekend seizure and we got an appointment for the following afternoon.

Pretty thankful that my seizures are pretty well controlled, even after the other weekend.  It really could be a lot worse.  I'm thankful for what it is.  And what it's not.

And lastly, I'm thankful for all my new friends who have been following my facebook page, my website, and my blog.  Your kindness and support mean a lot to me and it's nice to hear from everyone.  Thank you for all the emails and messages you have sent to me.

I hope you all have a wonderful Thanksgiving Day-filled with family, love, laughter, and yumminess.

Love,
Kaitlin <3

Let's Try Being Honest...



I've been doing some thinking.  Which is never a good thing, especially if you mix it with the frustration I've been feeling lately at the seemingly lack of support we've received from people we know.  Combine that with a smidge of PMS and you have the potential for a volatile post.  Hey, the title is "Let's Try Being Honest", so that's what I'm doing...

Kaitlin's Cauze has contacted numerous media sources in October.  We outlined what epilepsy is, we explained how epilepsy affects people.  Not ONE source bothered to do a story.  I guess it's more important to report on the new bridge going in. Or when Santa is coming to the mall. Or the soaring gas prices.  Yes, Captain Obvious- the economy is still lagging, do we really need to read about it AGAIN?

I've been thinking of WHY epilepsy doesn't get the recognition from the government since it IS one of the leading neurological disorders? WHY, if it's been around since biblical times, do we not have a better understanding of what causes some people to have seizures and why aren't we closer to a darn cure?  WHY are there less prevalent diseases/disorders out there that are getting more funding for research and all the fame?

Reason number one- take a look at the average person with epilepsy.  What do you see?  I look at my daughter and I see a beautiful young lady who does well in school, picks up music easily, loves art, has a passion for softball and who, for lack of better words, APPEARS healthy.  I see a young lady who is trying to show the world that she can do anything she sets her mind on, even with epilepsy.  What you don't see is the hours she spends on her school work just to memorize 10 random facts, because epilepsy has robbed her ability to remember short term events.  Or how it's easier for her to play her music by ear so she has to practice longer just to "remember" how to read music.  Or how on a hot summer night when her friends are at softball practice, she is home in the air conditioning because heat and humidity don't do well for her seizures.  I see a young girl who may not get her permit/license when she hits 16 like the rest of her friends.  A young girl who will most likely face employment discrimination if she is honest about her epilepsy...

Now, imagine a girl, the same age as Kaitlin, sitting in a wheelchair.  This girl doesn't speak clearly and cannot walk. She relies on her family to take care of her needs.  She has a less prevalent neurological disorder than Kaitlin.  But, the world looks at this innocent young girl in the wheelchair, and our hearts go out to her. And of course we want to help because that's how we as humans are programmed.  Of course we want to find a cure for this girl, she OBVIOUSLY needs it. 

People who appear different are the people who get our attention...

Afterall, Kaitlin is determined to save the world so she must be ok.

I'm all for being optimistic.  It's what carries me through the day when I really just want to pull the covers over my head and not move.  It's what keeps me believing that Kaitlin WILL outgrow this.  That Amandya, Meghan, Ilana, Michelle, Nickolas, Hannah, Mackenzie, and Noelle will ALL have a chance to live a NORMAL teenage life, WITHOUT seizures. And then I think about it some more, and I get pissed off.  I get even more angry at people who tell me to "relax" and "it'll be ok".  You try relaxing when you walk our journey. You try relaxing when you actually get educated on all the facts/risks associated with epilepsy.  You try relaxing when this is your child! 

I'm losing my optimism.  And I don't know where to look to find it.

I read story after story of how this person overcame epilepsy and defied the odds and is a pro athlete (insert any working profession).  And the message I'm getting is that people with epilepsy can live a normal happy life- because Joe Schmoe from the NFL did.  Well kudo's to Joe.  Did Joe share how many pills he takes a day to control his seizures?  Or how has to get a ride to practices/games because he CAN'T drive a car?  Did he tell you the horrible side effects that he endures from his medicine?  No, he told you he has epilepsy and he plays football and he's not letting epilesy have him.  yadda yadda yadda...

Can we be honest?  Can we just let the world know that seizures suck?  That seizures kill?  That seizures don't just affect the person who has them, but affects every person living in the household?  That parents of kids with epilepsy live each day with worry, apprehension, fear, anxiety?  That the side effects of seizure medicines are often worse than the seizures themselves?  That you DO change the way you live when epilepsy comes knocking? That parents are absolutely terrified at night because they know SUDEP is real?

Can we just be honest?  Do you think people will listen then?


Written by Kim- mom to Kaitlin.

Susan's Story...

How Epilepsy Entered My Life

Let me tell you my story. In September 2002, I remained in intensive care for 8 days due to meningitis. I came home to a very difficult recovery. I battled daily for three months. Every day was a struggle, even a shower made me tired. I was first diagnosed with epilepsy in May of 2003, after my friends noticed me zoning out while teaching and talking! I was determined to keep going after my diagnosis. I continued to work as a technologist in a school, one hour from home, thanks to an amazing group of friends (coworkers). They drove me back and forth daily. My principal was very understanding. I was blessed. After a year of various drugs, I worked my way up to 28 pills a day and was told I needed to consider brain surgery. Yikes , me, a mother of two young boys, brain surgery? I had to have many tests to see if I was a surgical candidate. I needed to have depth electrodes implanted surgically first to make sure they were coming from the right temporal lobe. On November 11, 2004, I had surgery and initially, all went smoothly. The bad news was that during surgery, they pierced a vein in my brain and it formed a clot. So they hauled me back into my second surgery, immediately. When I came out of surgery, I remained hospitalized for 14 days. I was told I’d have to go back into surgery for a third time for the lobectomy AND ONLY when the clot was gone. This time I was knocked down, but I went home to recover with my mother and that’s how I learned to be a “patient patient.” For two months I recuperated and waited for the clot to dissipate. I COULDN'T EVEN LIFT A GALLON OF MILK! But finally in January 2005, I got the green light for the lobectomy and had the surgery. My recovery seemed like a long time—about 4 months and it included three rounds of steroids to help me recover. And…I have to say, it wasn’t exactly pleasant—my brain was so swollen I would hear swooshing. Can you imagine? It was really weird. Looking back, it was a long recovery but I have no regrets. After all, brain surgery had its privileges. I got out of chores for a long time and my brother gave me a beautiful ring the day before I had my lobectomy. He had the word PEACE engraved inside. Being the chop buster that I am, I sent my friends and family an email that had phrases no longer politically correct to say to me, like: Do you have half of a brain? Did you lose your mind? Are you in the right frame of mind (I have no right brain), I want to give you a piece of my mind… and of course the ever-popular question --Do you have a screw loose? I still don't think they know if I was kidding or not. On January 10th , 2011 I will be 6 years seizure free!! I still take meds , I always will but it is what it is. I am able to drive. I have met the most amazing people because of everything that has happened to me and I am a very strong person. The blood clot and a brain surgery caused a personality change. That was very tough to deal with. I lost some memory but I continue to make new ones and I learn how to compensate for the short term memory loss.

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!

Purple Day!!!!!!

If you want to know about young people who are involved in the movement to raise epilepsy awareness... Meet Cassidy. Cassidy started a now global event called Purple Day. You can read about this extraordinary young lady who is doing extraordinary things for epilepsy awareness. GO PURPLE DAY !



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.

Ssshhhh!!!! Be Very, Very Quiet...

Shhhhh. Listen. Do you hear that? Do you hear that soft buzzing sound? There! There it is again! Did you hear it that time?

THAT my friend is the sound of epilepsy awareness on the move. It's the sound of voices gathering momentum and picking up supporters along the way. It's the excitement as our epilepsy community grows. It's the sound of HOPE and FAITH. It's the sound of thousands of people coming together for the common good of one specific cause. I believe there is a word that describes this: SYNERGY!

We ask you to join our cause. Be a voice and help us spread epilepsy awareness. Help us get more funding for research so our loved ones can someday have a seizure free life!

By the way, did you know that epilepsy is one of the leading neurological disorders yet still remains the least funded??! AND... the majority of the funds that are raised goes toward the research and development of new and improved anti-seizure drugs with side effects that are STILL often worse than the seizures themselves?!!

All I'm asking is that if you are taking the time to read this post that you take 2 seconds to click on the link and "like" the page.  We need all the supporters we can get to make this happen, and to bring epilepsy to the forefront of research.

Follow this link and show your support!!!!! Turn the White House Purple (March 26th)



Kaitlin & Kim

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

Four Legged Heroes

We cannot possibly do a blog-a-thon for epilepsy awareness month without giving mention to some four legged animals who, amazingly, are able to alert their owners of impending seizures.

Did you know that even though most seizure alert/response animals are DOGS, there are quite a few other furry friends that are able to alert their owner to in impending seizure? I have a facebook friend who let her daughter adopt a cat from the SPCA. Turns out, this cat has thanked this family in a way you would never imagine.

When her daughter is going to have a seizure, the cat will sit next to her and start meowing rather loudly. Even after the seizure is over, the cat has been known to curl up next to her with his paw on her, and just lay there.

According to my friend, the cat and her daughter seem to have this special bond which is pretty evident in some of the pictures I've browsed through. I've seen this cat "stuffed" into a doll stroller just hanging out and puurrfectly content to be with his owner. I've also seen pictures of this big, orange tabby colored in blue and pink. When I asked what that picture was about, my friend told me how her daughter "got bored" and colored the cat. I inquired if the cat put up a fight, and my friend said no, he was actually purring. :)

Just goes to show that sometimes man's best friend isn't always a dog...

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?

DETERMINATION, the key to life...

Today's post  is a little late being written and posted for reasons that you will learn about once you read further.

I was originally going to blog about an individual from the Trans Siberian Orchestra, but things didn't work out as I hoped, through nobody's fault.  But after last night's events I thought I would change today's blog...

I have been going to see the Trans Siberian Orchestra concert since I was 5 years old.  It was a family tradition that we looked forward to each year.  (mostly my mom:)  After I was diagnosed with epilepsy in 2008 I haven't been back to a concert.  We weren't sure if the flashing lights and lazers would be a trigger for me or not.

This year I was DETERMINED to go to their concert.  I was DETERMINED to prove that I could live life and do the things I enjoy, even if there is a risk of having a seizure.  I was DETERMINED to prove to myself that I could go to a concert with flashing lights and not be affected.  I was DETERMINED to not let epilepsy have me!

The concert was flabbergasting.  I enjoyed watching Roddy Chong, the violinist.  I don't think he stopped smiling for the entire 3 hours of the concert and dude can rock the violin like nobody's business.  I also enjoyed watching my favorite drummer, Jeff Plate. He's been a source of inspiration to me with wanting to learn to play the drums and keys.  It was amazing watching his technique with the drums- nobody plays better than Jeff.

I did ok during the concert, the flashing lights didn't bother me at all.  Of course, the REEAAALLLY tall guy in front of me did an awesome job at blocking a lot of the spot lights from shining in my face (thanks, tall man!).

Unfortunately, the night did not end on a happy note (no pun intended).  I did end up having a seizure 3 hours after leaving the concert.  But, we found out that 2 of my dogs may have the ability to alert me, as they both started barking right before the seizure.  During the seizure, they were both licking my face, neck, ears, and mouth. :X  My arm was also drenched with doggie spit so I think they were licking my arm or mouthing it during the seizure.  If you know Echo (which many of you have read about), this is pretty awesome because up till now the only things he has ever alerted to were: food, shadows, and squirrels. (and my cat)

This probably will not stop me from attending future concerts or living my life to the fullest.  Seizures Suck and that's a fact but I don't have to let it control my life.

Love,

Kaitlin <3

PS  GO LIVE LIFE LIKE DANNY DID!

Report Card

Normally, I would not post my grades for all the world to see.  Up till now, I wasn't really proud of my grades, nor did I care all that much about them.

I am homeschooled.  Not because I have epilepsy, but because this was a decision my family made.  I have been homeschooled since kindergarten--long before my diagnosis. Every year my mom asks if I want to go to public school and each year I say "no".  I like being homeschooled!

I would describe myself as somewhat forgetful.  Sometimes I have difficulty remembering things that happened recently.  I can remember what I had on my pizza on our vacation to Florida when I was 5 years old, but I can't remember where I just put my phone.  My mom explained that I have a little trouble with my short term memory so I have to work a little harder to switch things over to my long term memory.  This applies with my school work, music, and even my pitching (although a lot of my drumming and pitching is muscle memory, I still need to flip certain aspects of it to my LTM).

My current seizure type is absence seizures.  Mine are so brief that you will miss it even if you're looking at me.  Because they are so brief, we don't know if they are under control or not.

I started a new curriculum this year which is a little more challenging for me.  My mom doesn't believe in making life easier for me just because I have epilepsy.  So, even though I started out this year having trouble with my school work, my mom would not let me give up or change curriculums. (rolling eyes)  Both my parents are always challenging me to be all that I can be, even with epilepsy.

I have to take careful notes- then rewrite them onto notecards and review them often in order to do well on quizzes and tests.  Sometimes it's a pain to have to study so much but seeing my grades makes it all worth it. 

I would like to  erase the stigma that is associated with epilepsy.  People with epilepsy are NOT stupid or unable to learn.  People with epilepsy just may have to work harder and do things differently.  There are more devastating forms of epilepsy in which learning is delayed, thankfully my seizures seem to be controlled, and it's only my memory that seems to be delayed. :P

I also work hard at learning to play the keyboard and drums.  It's easier for me to play by ear than read the music, but my teachers are challenging me (demanding really...) to count out loud and read the music as I play.

What I've learned from my epilepsy is this: I am no different from anyone else, physically or mentally.  I can do anything I put my mind to doing. Chances are, if you tell me I can't do something because it's too difficult, I will figure out a way to prove you wrong. I REFUSE to let epilepsy have me!

Love,
Kaitlin

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!)

Go, Gabby!

GABBY SILVERSTEIN IS A FUN LOVING 6 YEAR OLD GIRL WHO IS ALWAYS SMILING. SHE LOVES LIFE. GABBY LOVES SINGING DANCING, PUTTING ON MAKE-UP, DRESS-UP AND PUTTING ON A SHOW. SHE IS ONE OF A KIND. GABBY WAS DIAGNOSED WITH EPILEPSY ON JUNE 6TH 2010. OUR WHOLE WORLD WAS TURNED UPSIDE DOWN.

A SUMMER OF FUN AT CAMP IS WHAT GABBY THOUGHT SHE HAD IN STORE FOR HER THIS SUMMER, NOT A SUMMER OF HOSPITAL STAYS, HANDFULS OF MEDICATIONS AND  LOADS OF TESTS.

THIS HAS BEEN SO HARD ON THE FAMILY. WE KNEW NOTHING ABOUT EPILEPSY. THIS ILLNESS DOES NOT RUN IN EITHER FAMILY. IT CAME OUT OF NO WHERE. SO SLEEPLESS NIGHTS AND THE RESEARCH BEGAN....

GABBY HAS BEEN SUCH A TROOPER, SHE "IS" GOING TO FIND THE "CURE".

WE HAVE SUCH A BIG FAMILY AND LOTS OF FRIENDS WHO WE CONSIDER FAMILY WHO HAVE BEEN SUCH AN AMAZING SUPPORT, WITH OUT THEM IT WOULD BE HARD TO REMAIN SO STRONG.

GABBY'S TEN YEAR OLD BROTHER WESLEY HAS BEEN SO STRONG AND SUPPORTIVE TO HIS LITTLE SISTER. IT IS VERY SCARY TO WATCH YOUR LITTLE SISTER HAVE TERRIBLE SEIZURES AND FEEL SO HELPLESS. WESLEY WORRIES ABOUT HER ALL THE TIME. HE HAS BEEN SUCH AN AMAZING SON, AND VERY UNDERSTANDING, SINCE ALL ATTENTION HAS BEEN PLACED ON GABBY..

TOGETHER WE CAN BE 'GABBY STRONG" AND FIGHT AND FIND A CURE FOR THE MANY PEOPLE WHO "SUFFER" FROM EPILEPSY.

YOU WILL NEVER BE ALONE TO FIGHT THIS MONSTER.... YOU ARE AN INSPIRATION TO MANY AND TO US YOU ARE A PRICELESS GEM...

GABBY RAISES MONEY BY DOING FUNDRAISERS FOR EPILEPSY. SHE SELLS "GABBY GIVES 4 EPILEPSY" BRACELETS. GABBY'S 1ST ANNUAL BALLOON RELEASE WILL TAKE PLACE ON NOVEMBER 21ST. I WOULD LIKE TO THANK THE FACEBOOK EPILEPSY FAMILY WHO ALWAYS CHECK IN AND OFFER SUPPORT.

KAITLIN IS ONE AMAZING GIRL AND GABBY IS FOLLOWING IN HER FOOTSTEPS ONE VOICE AT A TIME....

Meet the Hutchison Family...

As mentioned yesterday, today's post will be a link allowing you to meet the Hutchison Family of Colorado.

Like the Stantons -the Hutchisons have created their own foundation to honor the memory of a young life taken by SUDEP- their daughter, Chelsea.

Again, we would like to say thank you for the work they are doing to create awareness about SUDEP, sudden unexplained death in epilepsy.

Please click on the link to learn more about Chelsea: the Chelsea Hutchison Foundation

Meet the Stanton Family...

Today’s post isn’t really a post. It’s a LINK that I urge you to visit to learn more about SUDEP.

You will meet two amazing families over the next two days, the Stanton Family and the Hutchison Family. Each has a similar story to share…

In the face of tragic loss, these two families are finding a way to raise awareness of SUDEP, sudden unexplained death in epilepsy.

We would personally like to thank both families for the work they are doing. Thank you for talking about it and for sharing Danny and Chelsea with the world.

To read about Danny Stanton please click on this link: Danny Did

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

Meet Rylynn

On March 3, 2008, Rylynn suffered as grand mal seizure while riding in the back seat of the car. It was a terrifying experience!!! Not being able to get to her right away, made me feel like a horrible mother!! I dialed 911 immediately, and pulled in to a grocery store parking lot.

Her seizure lasted only 2 minutes, but it seemed like a lifetime! Once the paramedics got there (in less than 5 minutes) they tried asking Rylynn questions; "Whats your name?" "How old are you?" My little girl wouldn't answer. She just sat there in her seat, staring, unsure of what was going on.

Rylynn was taken to the hospital where they did an EKG, a CAT scan, blood work, and kept her under observation. All of the tests came back "Normal." We were sent home. I was mortified!! My little girl had just suffered a seizure and there was no explanation why. I was up that whole night, afraid she might have another seizure.

A few days later, Rylynn had an EEG, followed by an MRI. My precious little girl was so brave!! Rylynn's results came back from the EEG and it hit me like a ton of bricks. The neurologist told me Rylynn had really over active brain activity, and that it was epileptic activity. The actual diagnosis, Idiopathic Epilepsy. He told me that this probably wasn't the first seizure Rylynn had had, but possibly the only one I had witnessed.

Rylynn started taking a medication her pediatrician prescribed until we were able to get an actual appointment with the neurologist. When we went to our first appointment with Dr. Ross, I remember leaving still so unsure, helpless. I had so many questions, just completely oblivious on how to ask them. Dr. Ross decided to take Rylynn off the medication and start her on another, Trileptal. Rylynn seemed to do great on the medication, until she hit a growth spurt a few months later. She began to have seizures, only we had no idea she was having them. Rylynn suffers from what they call Absence seizures, it's kind of like she's day dreaming, or in a deep sleep while she is "awake."

Dr. Ross suggested we do a sleep study to see if the seizures were occurring in her sleep. The sleep study gave a lot of insight as to how Rylynn was while she slept. She had always been an active little girl, what I didn't know was she was just as active in her sleep! Dr. Litwan, who is a colleague of Dr, Ross, performed the sleep study. It was determined that Rylynn also had a sleep disorder, her brain was unable to wind down, it was over active even in sleep. So, we decided it best to put her on a second epilepsy medication, one she would take at night before bed to help her sleep and her sleep not be interrupted.

Rylynn did really well over the coarse of 6 months, no seizure activity! This came as somewhat of a relief to me! I could actually sleep, I was still paranoid, but I was finally able to sleep. Then, the seizure activity increased. So, we increased her medications. It got to the point where Rylynn couldn't even function!! She couldn't be a kid, she couldn't go to school, she didn't want to play. The medication was keeping her from having seizures, but it was taking away her ability to be a kid. We tried decreasing, and she would have the seizures. During March and April of this year Rylynn missed 26 days of pre-school. I was heart broken, I felt completely helpless. Because Rylynn wasn't functioning on this medication, I made an appointment with Dr. Litwan to discuss a change. Dr. Litwan decided it better for Rylynn that we switch to Topomax. Knock on wood, Rylynn has only had 1 seizure, that I know of, since switching her medication.

Rylynn's epilepsy diagnosis hit me pretty hard. During that short period of time, she was also diagnosed with a sensory processing disorder, as well as hypothyroidism. It was really too much all at once. I didn't sleep, I ate to help "stop" worrying. I needed help, so I could be strong for her! I was depressed, and it was severe. I began treatment with a psychologist, and began taking medicine to help. I was completely overwhelmed!!!

I don't remember exactly how my search started for a seizure dog. I started looking in to the possibility of finding Rylynn a better way of life. I spent a lot of time on the internet. I emailed 3 non-profit organizations, telling Rylynn's story. They all pretty much said the same thing, Rylynn was too young for a service animal. I became discouraged, what was I going to do?? One evening I was watching 7News and they had a story on about a young woman with epilepsy and her parents struggle to better her way of life. They too had tried to get her a service animal, but they too were told she was too young. So, they decided to train their own dog.

I got on the news website the next morning and looked for the story. On there they had a link to Noelle's Angel Dogs. I filled out an application, and contacted them for help. Tina contacted me just a day later and told me that they would help Rylynn get a dog!! I was so overcome with joy and emotion!! Finally, an answer to my prayers. I had been trying to set up fund raisers, get my family involved, when Tina sent me an email telling me about The Chelsea Hutchison Foundation and how they may be able to help with the deposit.

A week or so later, Julie contacted me via email and said they would like to help. Julie told me about the walk they had coming up on Sept 26. I think from that point on I spoke with Julie a couple times a week. Then it became daily just before the walk. She has helped my family so much!! The morning of the walk it was great to finally meet her. Rylynn was drawn to her! They had never met until that day and Rylynn adopted her into our family. Lot's of hugs were shared, and Rylynn even told Julie she loved her! It just melted my heart!!!! Julie thinks, and I agree, that Chelsea hand picked Rylynn and brought us all together!!!! My family is truly blessed!!!! To be surrounded by such beautiful and kind hearted people, it's absolutely amazing!!!! The overwhelming generosity of strangers, so willing to open up their hearts to help a little girl they have never met!!!!!!!!! I get so emotional, but I am extremely grateful!!!! Rylynn is a very happy, loving, special little girl!!!! I thank God for her every day!! Although she faces many challenges, she has an unbelievable spirit!!!!


Veronica


A NOTE FROM KAITLIN TO RYLYNN:  Enjoy your birthday party, Rylynn.  Make sure your mom takes LOTS of pictures so we can see your special day.  I'll make sure I post pictures of my party today too!  LOVE your new puppy, Daisy!  She is super cute, just like you!!!

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

Kaitlin's Story

December 13, 2008

I woke up that Saturday morning feeling more tired than usual but it didn’t stop me from being excited to go to my cousin’s wedding. I couldn’t wait to see my cousins, aunts, and uncles!

We were running late that morning; my parents wanted to be on the road by 11:00, but we didn’t leave the house until 11:15. We had to stop and pick up my sister, Kensey. Right before we picked her up I remember saying to my parents “I hope we get to THIS wedding, last time we went to a wedding our car broke down”.

Kensey got into the car and we were on our way.

Or so we thought…

I remember looking out the window at a gas station and then closing my eyes to take a nap. (we were only 4 blocks from my house at this time).

The next thing I remember after closing my eyes was waking up in the ambulance with sticky things on my chest (to measure my heart rate) and oxygen tubing in my nose. My mom was with me and my dad, Kensey, and Brandon were right behind us in the car. Things were kind of fuzzy in the ambulance and I don’t remember a whole lot of the ride to the hospital.

The next real memory I have is once I was in the ER- a bunch of nurses immediately came to my bed and started asking me questions, hooking me up to monitors, and starting an IV in my arm. I remember being scared because I didn’t know what was going on. My dad was talking to someone in the hallway and my mom was beside me doing her best to reassure me.

I remember my Aunt Jen came down to the hospital and my sisters and brother being there. I remember asking my mom if we could still go the wedding and she said “probably not” which made me sad.

I don’t remember anything else about the hospital.

I was sent home that same day. I was relieved to be back home but annoyed by the constant attention from everyone: “are you ok?” “do you need anything?” They (my parents) wouldn’t let me be alone at all that day and that got really annoying. Even my brother kept checking on me.

I remember my parents explaining to me what had happened. I felt very scared but I didn’t show my parents that I was afraid. I didn’t want them to be more worried about me.

Flash forward to November 2010- I am still kind of scared with my epilepsy even though I don’t let people see it. (I suspect after my parents read this they’ll be sitting down with me though). I’m scared that I’ll have it for the rest of my life. I’m scared that when I’m older and do things on my own I’ll have a seizure and get hurt and nobody will know. I’m scared to go biking alone, or swimming alone. I’m scared I’ll still be having seizures when I’m old enough to drive and that I’ll have one while driving.

But as scared as I am, I try not to dwell on the “what if’s” and I focus on the present instead. I’ve gone 23 months without a tonic clonic seizure and 17 months without a complex partial seizure. I have some pretty awesome friends who don’t treat me differently just because I have seizures (although they do watch over me). I have an awesome family who support me, no matter what.

Hopefully, my story will help someone else know they aren’t alone and that it’s ok to be afraid but not to let your fears control how you live each day.

We’re in this together!

Love,
Kaitlin

EMFIT

Admittedly, when it comes to advancement in technology, I am one who drags my feet kicking and screaming at the changes that are coming about. I LIKE things the way they are, thank you very much! I don't want to have to take a course to learn how to operate my camera, laptop, cell phone, and controls to the TV, stereo, and gaming units.

However, there are times when even I have to admit, that advancement in technology is good...

One of the advancements in technology that I am a HUGE advocate for is the movement monitor by EMFIT.

I've never heard of such a device until I read about Danny Stanton and the Danny Did Foundation. I quickly checked out the webpage and was IMPRESSED that there is such a device on the market.

I sent a message to Christine at EMFIT and within hours received a reply. At this time my husband and I were discussing whether or not to pursue this for Kaitlin. We hesitated for many reasons, most of which centered around her need for normalcy in spite of having epilepsy.

We decided it would be well worth the investement for peace of mind. We were stressing at night, waking up frequently to check on Kaitlin, always concerned that she would have a seizure during her sleep that we would not know about....

Although Kaitlin hasn't had any nocturnal seizures since having the alarm we do KNOW it works. We've had a few false alarms where Kaitlin was moving too much in her sleep, after 20 seconds of continued movement (the setting we have hers set on), the alarm sounded alerting us of a potential problem. Fortunately it was not a seizure, and thankfully we know this unit is doing the job it was designed to do, therefore we sleep much better at night.

Feel free to visit their web site and check out the movement monitor. If you have any questions regarding the movement monitor they won't mind you sending an email or giving them a call. They are truly eager to help.

And... In honor of Epilepsy Awareness Month, Emfit will offer 15% off the retail price of the Movement Monitor through November 30th. Contact their office at (877)32-EMFIT for more details.

Kim (Kaitlin's mom)

Best Friends...

Don't walk in front of me,
I may not follow.
Don't walk behind me,
I may not lead.
Just walk beside me
and be my friend...

Kaitlin decided to do a balloon release to kick off epilepsy awareness month, so she gathered her 3 "besties" to help her get the job done. 48 purple helium balloons, each with a fact card attached, filled our living room... and then the sky...

Of course, it was a windy day in PA. And of course, all those balloons got somewhat tangled while waiting to be released, and of course Kaitlin accidentally let go of her balloons a little early... But it was still a FUN event filled with laughter, silliness, balloons, french fries, and pizza.

Riley, Kaitlin, Ally, and Erin (pictured left to right) are perhaps the funniest group of girls I could ever imagine hanging out with. Each girl brings to the mix their own unique personality, which when combined with the other 3 leaves you guessing what they are going to do next.

Riley, Ally, and Erin have Kait's back, no matter what. They keep an eye on her and know how to respond should a seizure occur. They don't treat her differently because of her epilepsy and accept her for who she is. That's a sign of true friendship and amazing girls!

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...