Monday, March 15, 2010

Niki's Story

I am a cardigan addict. If I had an extra hour in the day, I would spend it reading. I have a thing for shiny shoes. I wish I could run a marathon. One of my dreams is to live on the beach, with the mountains nearby. I will have the improper use of an almost every post. My grammar on this blog would probably make my Honor's English teacher, Mr Fagg (yes, that is his real name) shudder and I totally overdo the bold and italics. However, that is the great thing about blogging, there are not many rules. I use emoticons, way too many explanation points and no one really cares, or at least do not make it known that they care. It's great! I am known to be really competitive and have sustained a Wii-related injury.

I am also a mother, wife, friend, advocate, social worker and a bunch of other things. I like to cook, have a thing for organization, and I have epilepsy. My first seizure was when I was 7 months old. It lasted over 45 minutes. The doctors told my frightened parents that I would either be severely retarded or dead by morning. Neither of those things happened.I have my strong family to thank because I never felt like I had a serious disability. I knew I was different, but they instilled in me (with help from a stubborn streak) the feeling that I could do anything I wanted to. I have always had a defiance when it comes to someone telling me I can't accomplish something because of my limited body. 'They' said I would be severely delayed and wouldn't be able to learn...I got straight A's. 'They' said I would never be able to go to college...I started three days after I graduated from high school. 'They' said I would never be able to move away from home...I have lived in Israel, Hawaii, and multiple other towns away from the farm where I grew up. 'They' said I couldn't attend my high school graduation...I was doped up with Valium, but I was there. I have been a director for several companies, my professional resume is quite stacked for someone so young. The list goes on and on. Hard work and being more than a little independent has gotten me to where I am today. Not every one is this way, but I feel grateful that I have lived a semi-mainstream life. It was all about the attitude that nothing could keep me away from something that I really wanted to achieve.

Life was never easy. Everyone around me had to struggle to make sure I was safe and taken care of. "They" whoever "they" are including doctors, well-meaning friends and associates, etc. never knew they were just bringing out the fighter in me. Now I have to be a warrior for my son. I want others to know that epilepsy and seizures affect 3 million Americans, with 200,000 new cases each year. That is more people diagnosed with epilepsy, than with breast cancer each year. I have felt embarrassed, judged, hurt, ostracized and a host of other feelings because my brain doesn't function properly. I have had to accept that it isn't my fault, it's not my parents fault, or a doctor's fault. It's just something that happened and has made me a stronger person. I went through a lot of guilt when my son was diagnosed because I had lived through the struggles and pain that comes with a disability that no one really knows a lot about. It's taken some time and some real self-examination to realize that it is not my fault. I have started to turn my guilt into passion. I hope that others out there who know someone who has seizures, recognizes that it is a disability. Also, with hard work, most people with epilepsy can be just as successful as "normal" people. If any of us are really normal!I have had three different types of seizures. When I was younger I had staring (absence) seizures. I also had petit mal (Complex partial) seizures, most affecting only one side of my face. I continue to have grand mal (tonic clonic) seizures, but not to the extent of those in my childhood or adolescence. I do not have an aura, and there were no specific triggers for my seizures when I was younger. My seizures started out like most stories, with febrile seizures. They progressed and by the time I was two years old I was having seizures with and without fevers. There were a couple of occasions that I had up to ten major seizures in one day. I was so drugged that I was either so hyper or so sleepy that I had no quality of life. My parents made the decision to take me off of medication before I entered school. There was no rhyme or reason to my seizures. I could have them when I was sick, or jumping on the trampoline, or for no specific reason at all. I went back on medication in high school, but there was a two year period in junior high where I had no recorded seizures. I also had a period in college where I was 15 months seizure-free and another where I had 19 months without one. The longest period of time is three years, where I had no recorded seizures. It is especially devastating when I have gone a really long time without a seizure and the beast rears its ugly head again. I find it is the same with Cole's tonic clonics.
After hundreds and hundreds of seizures, my epilepsy is fairly controlled. I am not on any medication. Through finding out about Dravet Syndrome and diagnosing Cole, we have discovered that I also have an SCN1A mutation. This does not mean that I have Dravet, but most likely fall on the spectrum of GEFS+ (Generalized Epilepsy with Febrile Seizures Plus). It was a wonderful/heart breaking moment to realize after almost 30 years that my epilepsy is connected to a genetic mutation. At this time, I am rarely having seizures. One of my last was in June 2009. Someone found me in a parking lot, where I was going back to my car after picking up food for my extended family. They called the ambulance and found my Dad's phone number in my cell-phone. They were gone by the time I was coherent. Unfortunately, I have a lot of stories like this. This particular seizure was in the aftermath of a lot of emotional and physical stress, as all of my seizures in adulthood, since 2003 have been. So all I have to do is never be stressed, get plenty of sleep, eat right and everything is okay...yeah, right! My world is full of stress, but I have to take care of myself or I can't take care of or be of any use to anyone else. I am so glad that my husband understands this, because he is the one who pushes me to rest. I would just run around on 'empty' if it were not for him. It seems that a surgery to close a PFO in my heart has made a difference for my seizures. Taking care of Cole on a daily basis makes me realize how important it is to have a strong support system when you have a crisis. Cole's epilepsy is already worse than mine and there are new symptoms appearing all of the time.
I would define myself as eclectic. I love a lot of different food, activities, styles, types of music and so on. I love to try new things. One thing that constantly stays the same though, is how I feel about getting the word out about Dravet Syndrome and epilepsy. I want to make this blog a safe space where people who are struggling with this condition can connect and realize that there are other people out there that are going through the same thing. It is also to help keep all of our wonderful friends and family updated on Cole's progress and treatments. I am sure that my super educated friends with Harvard degrees wince when reading all of the grammatical errors on Warriors, but that is in between their smiles. We use this site as a place to connect with other people. It has brought a lot of good into a lot of people's lives. We hope that it does the same thing for you, whether or not you have seizures. Feel free to e-mail us. We need to spread the word and do something about epilepsy. This condition, just like a bunch of others, needs warriors!


  1. Nik, you've done an amazing job on this blog! I'm certainly proud to have you as a friend!

  2. You're an awesome mommy warrior for sure! I read your son's story on KSL and just wanted to let you know you can set up your own group on this site and let your friends and family know via email or facebook and when people pick your charity to support you get the proceeds. We currently support autism since we have a family member with that disability. Just an idea for you to maybe get the dog funds quicker! I wish your family and your little Cole the best!

  3. What a beautiful little boy!! And you should be congratulated on fighting your own battle with this disease so that you can now help your son deal with it. A close friend of mine began having grand mal seizures but she could not stand the way the seizure medication made her feel. They came during a very stressful period in her life. We realized her blood sugar (which she had not had problems with before this, but it can drop during stess) was triggering her seizures. So she went off both sugar & dairy which can produce sugar imbalances. I had also just attended a conference at NIH with doctors from around the world reporting their successes in using Omega 3 oils for seizures, mania, PMS, ADHD, psychosis or schizophrenia so she started using flax seed oil.

    And besides resetting her circadium rythum by going to bed earlier & earlier each night she also went to bed the minute she began feeling tired. In doing this she was able to wean down very slowly & never have another seizure. That was 18 years ago.

    Also I had someone tell me recently that he has many times seen someone take high doses of Vit B6 (20-50mg) & that will help stop seizures. He said in some instances it has stopped seizures permanently. I wondered if you have ever heard that or ever tried it for your seizures? That would be wonderful if it worked because that would mean it could also help with Bipolar Disorder since Bipolar is a continuous series of mild seizures. Oh & another thing I have seen stop Bipolar faster than anything I know of is Noni juice. Have you ever tried that?

  4. Hi Niki - I was glad to find your site. My daughter Natalie is 10, was on the Ketogenic diet for 2 1/2 years, and are currently evaluating for surgery at PCMC. We are planning a Purple Day 5K for Epilepsy on March 26th - you can find out more about the event at

  5. Hi Niki,
    I write a blog about my daughter's epilepsy
    I have never met another parent or talked to anyone who knows what this battle is like except doctors. They understand in therory but.... My daughter is on the MCT diet. Her seizures are rarely controlled. Though she's doing better now than when she was on drugs.I hope the ketogenic diet helps your boy.
    Thank you for your story.

  6. Are you thinking about buying something for the kids? Why not give them the one thing that will not only provide happiness and enjoyment but will also provide health benefits? Have you heard about trampolines?


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