Monday, May 20, 2013
On January 23, 2007 he took his last Zonegran. We had already weaned the Topomax. Bryce has been completely off all of his seizure meds since then. He is still seizure free and AED free to this day.
As he has gotten older, we have seen new problems develop. The ADHD, anxiety, and PDD are all recent diagnoses. Bryce has worked incredibly hard to do things that most other kids just take for granted, like learning to read and write. Things still aren't perfect, but he's making progress, and doing better than anyone ever expected him to. That's all we can ask for.
Wednesday, May 15, 2013
FOR IMMEDIATE RELEASE
It’s What Fun Is!
Lagoon Day for the Epilepsy Association of Utah
SALT LAKE CITY, Utah May 15, 2013 – Keep your arms and legs inside the ride at all times, hang on tight, and have fun!
If you haven’t heard that phrase since you were a kid, maybe it’s time to get you back to Lagoon!
On Tuesday, June 11th, 2013 Lagoon Amusement Park in Farmington is recognizing the people of Utah touched by epilepsy and offering us a special “Lagoon Day”. From 10am to 10pm, anyone that comes to the ticket booth and says: I am with the Epilepsy Association of Utah will get their all day Passport for $28.00! Taxes Included. That’s a savings of $18.00 a Passport!
But wait, there’s more: One person who accompanies someone with epilepsy and is designated their ‘chaperone’ will receive their Passport for $10.68! There is one catch: chaperone’s need to be designated by this Friday, May 17th, to ensure they get this deal. Send your chaperon’s name to Jenn@epilepsyut.org to ensure we get the proper headcount.
The EAU will also have the Big Horn Terrace for the day and there will be extra personnel and EMT’s on hand to assist with any extra medical needs that may arise.
So get the platforms out because you must be at least this tall to ride! Hope to see you there!
Date: Tuesday June 11th, 2013
Time: 10:00am- 10:00pm
Place: Lagoon Amusement Park
375 Lagoon Drive
Farmington, Utah 84025
ABOUT THE EPILEPSY ASSOCIATION OF UTAH
Founded in 1973, The Epilepsy Association of Utah is a 501(c)(3) charity dedicated to enhancing the quality of life for all individuals living with Epilepsy and seizure disorders. 1 in 26 people will develop Epilepsy at some time in their lives leading to over 100,000 people in Utah alone. Epilepsy is the 4th most common neurological disorder in the US after migraine, stroke and Alzheimer’s. The Epilepsy Association of Utah offers a public education program, statewide support groups, personal and professional advocacy, college scholarships, art exhibits, educational conferences, summer camp and more. Visit http://epilepsyut.org for additional information.
Press Contact: Lindsey Palmer
Monday, May 13, 2013
I recall waking up out of unconsciousness, blinking dazedly, seeing the ceiling of the living room and thinking how odd that there’s a mask of some kind on my face. Then, I noticed there were men encircled around me. I felt intimidated and scared, what was going on? The fear must have been apparent upon my facial expression because next came murmurings of what I now assume were comfort and reassurance, but it wasn’t clear to me at the time. Then they were talking pointedly with my parents. What is going to happen to me? After that, I was assisted out to the red Ford Explorer and put into the back seat to lay down for the ride up to Primary Children’s Medical Center.
It was December 31, 2000. I had just turned 12 days earlier, and it had been six years since I had been diagnosed with epilepsy. Six years since the last noticeable seizure, and the first time I had ever had a neurological event severe enough to go to the hospital.
It was a long time at the ER and it has never been clear what happened. Ironically all I do remember is sitting in an examination room in what I didn’t know was my new silk nightgown I received for Christmas. This medical person was asking me all these questions that I didn’t know the answers to. How was I supposed to know the date? How was I supposed to know what I had gotten for Christmas? Had Christmas already happened? Then I saw the scared look on my mother’s face and I knew this was going to be a long journey.
Interestingly enough, I also remember was that about one month prior to what we call the “breakthrough-seizure,” I hit puberty and my period began. In retrospect we believe it was the fluctuation of hormones in my pubescent year(s) that triggered it.
It really hadn’t occurred to me that my diagnosis made me different from everyone else until that day. I hadn’t ever had a seizure severe enough to disorient and disable me like that one did. Initially, back in 1994, the neurologists thought my absence seizures were of a juvenile form of epilepsy – take the medication, control the seizures, and I would presumably grow out of it. It was obvious as I sat in the ER at PCMC that this wasn’t the case.
So a new round of neurological tests an EEG and MRI, and a new regimen of medication was the decision. It would later be presumed, after the tests, that because I had no brain-damage of any kind or any malformations in my brain to give some sort of cause to the seizures, that I have a genetic form of epilepsy. My brain is just more vulnerable to the triggers of seizures than others. The updated diagnosis? A generalized form of epilepsy – which meant that I no longer was expected to just have absence seizures, but a slew of other seizure types due to the genetic nature of it. I wouldn’t grow out of it. This was devastating.
In retrospect, I don’t know what has negatively affected me more throughout the years, the seizures or the medication for the seizures. Seizures just suck. But the medication, the dreadful Depakote, really affected me, and sometimes does still. I was feeling so down. I was so tired – so dulled in my mind. I gained weight fast. I was loosing hair just as fast. My gums became inflamed and sensitive. In my mind, I wasn’t who I thought was “me” anymore. The transition was terrible, but it would prove to keep the seizures away, for the most part.
School kept me distracted from how I felt and kept me focused on my goals. I got back to the “normal” schedule. I got super involved with extra-curricular activities to ensure maximum academic and social retentions, despite the depressed sense of self I had as a result of not really understanding what the heck was going on inside me. Middle school was, indeed, a struggle but, academically speaking, I did really well. I stuck with the smart kids and tried to be friends with the popular kids. I aimed for acceptance despite what made me different and I was prepared to please.
The same can be said of high school, until socialized messages regarding physical image really began to get me down. Even though the seizures were well controlled, I pleaded with my parents to change the medication, I hated the way I felt and I hated what it did to me – particularly the weight and hair issues. So during the summer between sophomore and junior year we consulted with my neurologist and she suggested Zonegran. It would be a near-tragic experience.
During the medication transitions I was sick and I wasn’t getting well very fast. I would try to do the normal summer stuff – go to girls camp, EFY, etc, etc, etc. It just wasn’t fun anymore. If I wasn’t feeling down about myself before, I was then. Nothing was appealing or appetizing. I was apathetic. I didn’t eat much – which on the one hand was great because I was shedding pounds fast, but on the other hand it was too fast and seemed almost like anorexia. I had no idea why I was acting this way. I was lonesome. I was depressed. I wanted to hurt myself. How much of all of this was a result of being sick? How much was the new medication? It was difficult to differentiate. When the summer homework for my upcoming honors English course arrived and I couldn’t comprehend the reading, it was time to call the neuros at PCMC again.
So, we chose the “safe” medication. The one we knew would work and the one whose side effects we knew how to cope with. I was back to square one with Depakote, but I was more myself than I was with Zonegran. This time I was told something by the neurologist (as I was a teenager in high school) that while on Depakote I shouldn’t become pregnant and have children, but that wasn’t what I heard.
What I thought I heard was that as a result of taking the medication I wouldn’t be able to have children at all – that I wouldn’t be able to conceive. A new level of devastation had come into play with my medication. I would silently try to come to terms with this for several months – almost years before I realized what she meant. It was a warning to not have un-protective sex while on Depakote. In retrospect, I understand why I was told this, as Depakote has horrendous track record for birth defects. I just wish, instead of side-stepping a short talk about sex, that the neurologist had just been blatantly honest with me about it – doing so would have saved me so much misunderstanding and grief.
During my high school experience I was living this “normal,” life where I seemed like a typical, goal-oriented, high school girl - who, although not happy with her image, just wanted a successful academic and extracurricular experience so she could get into the college of her choosing. The whole time, I hated what I saw inside this typical girl who happened to be me. Physically, I didn’t look “pretty,” and I hated myself for it. I hated that it took me three times as long to do homework than the average student in my classes. I hated that I needed help to get through the homework and get it turned in on time. I hated that because of my slower processing (due to seizures or medication, it wasn’t clear) I did poorly on standardized tests, such as the ACT. I was depressed, and no one seemed to know it.
In spite of my inner-sadness, all of the time I spent trying to be a smart kid, a popular kid, and a leader actually paid off. I graduated from Woods Cross High School with high honors and scholarships awaiting me. I was a Deseret News Sterling Scholar in the department of Family and Consumer Sciences; a Utah Scholar; and I would later become a Youth Ambassador for Midvale City.
With a generous invitation from Utah Valley State College (now UVU) I chose to bleed green as a
UVU Wolverine. After six years there, I graduated this past April with my Bachelors Degree! The areas that I felt inclined to study were American Sign Language (ASL) and music so I chose “Deaf Studies” (with Interpreting as an elective emphasis) as my Major, and “Music” as my minor.
First few years at college were fine, with the help of UVU Accessibility Services, I was able to receive the academic accommodations I needed and succeed as a college student. As I started to get into my upper-level classes the slowness in cognitive processing became more evident and Professors sometimes noticed this during class. I did my best to remedy it and be open in communicating with my professors about it. It was this, being open with my professors that enabled me to see what it was that I needed. I didn’t realize what I needed until I really got involved with Deaf Studies.
There were several severely influential professors I have had the privilege of interacting with, but one in particular who changed my life, and my perception of epilepsy was Professor William Garrow. No matter what class I had from him, in the Deaf Studies department, a few frequent topics of discussion were “oppression,” “stigma,” and “disability” – and how they were all related. The main point of his lectures (I found) was to allow us to think critically about why the world, as a majority population in society perceives people with disabilities the way they [the majority] do and how we [as prospective advocates] can influence and change that oppressive perspective for good.
Another main point of his was to talk about the issues – talk about the perception of “disability.”
Talk about how the legality of the label, “disability” can both help and hinder a person. Talk about how the media portrays this so-called “disability.” Talk about how the typical mainstream (public) education system don’t encourage real growth or challenges and just maintains disabled students. Talk about how all of this talk of the “disability” as a label is actually quite oppressive and stigmatizing in many realms – particularly socially. So, I applied these discussions and lectures to what I knew of epilepsy and seizures – and to me.
It was just a year or so before meeting Professor Garrow that I found out about the Epilepsy Association of Utah (EAU). Between my collegiate studies and the information and support I have gained from the EAU, I was able to finally be ok with saying, “I have epilepsy – I have a seizure disorder.”
A few months later, I would write several papers for Professor Garrow in a Disability Theory class, and I came to a new conclusion. To reference a passage from my final paper in that class, I wrote, “Yes, it does seem easier to be ‘normal’ rather than ‘disabled,’ but such convenience does not, in fact, lead to an increased value of one’s life. Presumptions about the horrors of disabilities are usually made by those not living life in a disabled body .” This realization was the beginning of acting on what would be my new perspective and passion. This new outlook on life would enable me to begin celebrating that I was different from others that not being “normal,” was ok and I was ok with it.
Another part of what helped me open up about my epilepsy was volunteering as a helper to one of the campers who needed more attention at Camp Spike and Wave (now Camp Neuro Revolution). I was able to bond with youth who were going through a lot of the same things I had been through. All of the hindrances youth with epilepsy experience in academic and social realms– issues with driving, dating, self-confidence – as well as all the other issues where seizures impacted our lives. I was 21 years old then – I had the diagnosis for 15 years and I had been living with it my whole life. I was finally willing to wear a medical bracelet so I could stay safe if I were to have a seizure. I was finally comfortable with saying, “I take the bus because I choose not to endanger others if I were to have a seizure.” I was finally willing to talk about it.
Once I was open about it, “epilepsy,” as a scary and stigmatized word, no longer had power over me. Because I am comfortable talking about it, I can guide those around me on how they can be comfortable with me and know what to do if I have a seizure. Sure I might have a seizure – it could happen anytime. And sure the meds may suck, but I can still live my life and I can still have an amazing time. To quote Nelson Mandela, “There is no passion to be found in settling for a life that is less than the one you are capable of living. ” I have found that I cannot and will not settle for a life of limitations and lowered expectations, I have found my passion and I expect myself to live it! I wouldn’t have been able to get through college, have a job, and be a leader like I am today without that perspective. It is such an exciting thing to realize that I don’t have to let epilepsy get in the way of what I want to do in life.
I don’t see epilepsy as limiting, I see it as an opportunity to understand myself better and take better care of myself. It was that change of perspective within myself that changed everything about my epilepsy - the change of perspective changed me from the inside out. As many have said to me, in light of my recent graduation, this isn’t an ending – it’s a new beginning, a new adventure and I am going to embrace it. The same can be said of my change of perspective on life. I am still working on bettering myself everyday as a person. I am taking on the issues I still have with few minor seizures that pop-up, and the negative side effects of the medication I still deal with. I figure, I’ve made it this far, I can keep going with this new perspective on my life, and I will.
Monday, May 6, 2013
Erik had his first seizure after a fever at 3 years old. According to his family there is some discrepancies on when his seizures started frequently. The one thing that we know is that it was in his early teen years. He started having seizures quite frequently despite medications. He gave up playing football and started managing football because coaches and doctors told him it was too dangerous to be on the field. Despite that he had to rearrange his plans it didn't stop him from working with the team. He had a really hard time with controlling his seizures in his late teens and early twenties. Erik went to college and worked with the football team for Ricks College for 3 years.
Erik met Kris when he went out with her roommate. Seven months after they stopped dating Erik asked Kris out. It was only a few weeks later they were engaged and married just 4 short months later. Minus a few bad days Erik's seizures were fairly controlled, one seizure every two to three years.
Kimmie was born in May 1998. She was a beautiful healthy baby. Despite mom's wishes she came exactly on her due date. From the beginning Kimmie had a mind of her own. Two and a half short weeks later Kimmie had her first seizure. Six months later she started having seizures regularly. Her seizures started with tonic clonic (grand mal) seizures and they lasted an abnormally amount of time (5 minutes to 90 minutes). Between hospital trips we spent a lot of our time relearning basic developmental skills. At five years old Kimmie had what some call a catastrophic seizure. She started seizing and we took her to the hospital. She ended up seizing for 6 hours straight. We are very blessed that Kimmie came back to us and that despite all of her setbacks we have our beautiful girl.
These prolonged seizure started our out of state doctor journey. We at first traveled to the Mayo Clinic in Minnesota. With some answers on some recommendations of some friends and the doctors going along with what we wanted to try we started a treatment of Stiripentol from France. It was our heaven sent medication. At the time that we started it than it hadn't been medically approved anywhere so the price was fairly low. When Stiripentol was European medically approved the price jumped 350%. We sold our home to afford this amazing medication. It gave us almost 3 years completely seizure free. We traveled to a Dravet Conference in Chicago. We still did not have an official diagnosis although Kris knew with the reaction to the Stiripentol that Kimmie had Dravet Syndrome was the cause of the seizures. Diagnosis came at that amazing conference. Two years later again by the help of some amazing friends, we found ourselves at the next Dravet conference in Connecticut. Our friendships there helped provide the relationships that Kris made to help make the Dravet Conference last August in Utah happen.
A little over two years ago Erik went from having one seizure a year to a seizure in the bathroom that changed our lives. Erik started struggling for over 9 months to return to "normal" life. Although he is still having seizures every few months he is encouraged by the possibilities of adding a VNS. He has not let his seizures from having a family, a job and doing his best to better the lives of others with epilepsy.
Kimmie was just granted her Make A Wish through the MAW Utah Foundation to go met Buddy the Cake Boss. She is currently having quite a few seizures a day (mainly myoclonic, complex partial and absence seizures). Despite having a lot of seizures (teenage life will cause that in Dravet Syndrome) she continues to educate about epilepsy. She has spoken to Governor Herbert, Senator Hatch, Representative Chaffetz, and many others about the importance of epilepsy.