• Changing lives one seizure response dog at a time

  • International Epilepsy Awareness – Day Twenty-One

    Tyler

    1) What is your connection to epilepsy/seizures? Unfortunately, our story goes way back to when I was a child. I had my first seizure when I was two, was lucky enough to outgrow it by the time I was 10. Fast forward 17 years, and my son had his first seizure. He has Doose Syndrome, which is a rare, catastrophic form of epilepsy that is medication resistant, and hard to control. The cause is unknown. He has failed 18 pharmaceuticals, the keto diet, VNS and Charlotte’s Web. He has many seizure types including tonic clonic, atonic, tonic, myoclonic, absence, atypical absence, just to name a few. He is nowhere close to being under control although he is much better from where we started 8 years ago.

    2) Tell us a little bit about your journey. 2007 was Tyler’s first tonic clonic seizure. A year later after his seizures increased to 1000’s a day and two neurologists later, he was diagnosed with Doose Syndrome. My “normal developing” boy disappeared before our eyes. The only thing he could do safely was sit on the couch. Someone had to be right next to him at all times to keep him safe. 2009 we started the keto diet. He was on it for 2.5 yrs. We took him off because the seizures came back and he stopped growing. 2010 he had the VNS implanted. The VNS has helped some but only if you catch the seizure in the right moment, it will sometimes stop it completely or lower the duration and strength. 2013 we tried Charlotte’s Web. It worked originally, but they made changes to it and it stopped working for him.

    3) What is a typical day like for you? Typical day for Tyler starts out by waking up around 5:00 am because of having a seizure and not going back to sleep. We give him Haleigh’s Hope at 7:30 in the morning and an hour later give him the rest of his meds…a total of 9 pills. He heads to school at 8:30 and needs a break/nap around 9:30 or so. Again, he will have a seizure or two while he is at school. He amazes his teachers and us by getting up and still be smiling and trying his best, even though you know he is absolutely miserable. Another dose of Haleigh’s Hope at 6:00 p.m., with another 11 pills at 7:30p.m. He is in bed by 9:00pm with another seizure an hour later. Next seizure starts around 2:00am.

    My day consists of giving medicine, always worrying that he is safe and when the next seizure is going to hit, and “sleeping” with a baby monitor and Sami monitor within ears shot. Tyler makes a slight noise and I am up checking on him. Now, all of this is on a good day, on a bad day, he can have 7 seizures at night (tonic clonic), and absence and myoclonics all day long, to where we say he is either “here” or “not here”.

    4) What support do you have?? I have amazing friends that are always there to listen to me, whether it is a hug, lending ear, or bringing dinner over on our bad days. My family is also very supportive. Tyler’s teachers are also amazing to us. And of course, there is Penny. Penny is Tyler’s seizure response service dog.

    5) What would you like others to know? I want others to know so much about epilepsy. Just because you can’t see it, doesn’t mean that it isn’t there. The co-morbidities that come along with having epilepsy. Like everyone else, we need so much research done for epilepsy but yet there is no money in the research for it. THAT THERE IS NO CURE. That epilepsy doesn’t affect just the person that has it, it affects everyone around that person.

    6) What has or would make a difference for you? The best thing that has happened to me as a parent with a child with epilepsy is Facebook. I realize I am not alone and have others to go to that understand what we go through on a daily basis. The Chelsea Hutchison Foundation is part of that. I love the fact that we can go to the foundation’s page, and post anything, knowing we will not get judged. What do I want in the future? What everyone else wants…seizure freedom for my son and others. And someday, a cure.