• Changing lives one seizure response dog at a time

  • International Epilepsy Awareness – Day Eight

    Kayce Tilman

    Meet Kaycee.

    Our epilepsy story began shortly after Kaycee turned 5, just after Thanksgiving 2014 and we had no idea of the journey we were about to begin. As with many epilepsy diagnoses it took time and persistence on our part to figure out what was going on with Kaycee. Our journey of diagnosis started with absence seizures, quickly changing to complex partial seizures, all the way to currently being labeled with intractable epilepsy.

    Once we were able to start Kaycee on medication, I thought to myself, “Great, quick fix right? It’s just seizures; a lot of people have them.” Wow, was I wrong – there was no quick fix. We began adding medication after medication, taking one away, adding one to the mix hoping to get the right formula.
    Mid-March 2015 brought another hurdle, when Kaycee started having her first, full convulsive (tonic clonic) seizure. This was our worst nightmare… we were helplessly watching our baby girl seizing in a hospital bed thinking, “we’re going to lose her and there is nothing we can do”. After close to an hour and what seemed like a crazy amount of emergency mediation being administered to her by the ER staff the seizure finally began to subside and we were quickly ushered into a helicopter on our way to Nationwide Children’s Hospital. She didn’t let this dull her shine at all – her biggest issue with this entire episode was that she didn’t remember riding in the helicopter and didn’t think it was fair that she had to ride home in a car – yes, the struggles of a 5 year old are real.

    The following weeks brought with them changes in Kaycee’s “typical seizure activity”… she began having different types of seizures several times per day –we didn’t know there were so many kinds of seizures, but when we finally admitted to ourselves that these were not going away we began researching. It’s amazing what you can learn in such a short period of time when you are thrown into something so abruptly. I’m sure Kaycee’s Neurologist was thrilled when she learned we were now internet experts on all things seizure related, but she remained very supportive and answered all our questions never making us feel like we were bothering her. Our research brought us to a term we had never heard before “SUDEP” or sudden unexplained death in epilepsy. That’s where that pit in the stomach comes from – the fear of her slipping away from us while we’re sleeping. We wake up several times a night and wait to hear her breath sometimes panicking and shaking her to see if she is OK. She usually just mumbles and rolls over – just crazy mom or dad again.

    Fast forward to now, after many emergency room visits, doctor appointments, tests, and having been on various medications, we still have no answers and while the seizures are not as severe we can count on them showing up just about every day. Kaycee takes it all in stride and most of the time with a sweet smile –attempting to pull herself around the house to get where she wants to go after the seizure that temporarily takes her ability to move the right side of her body; trying to communicate to us that she’s OK after the seizure that temporarily makes her unable to form words and verbalize thoughts; still trying to be as independent as we will let her be. For our own peace of mind and through the generosity of the Chelsea Hutchinson Foundation, we have recently obtained a movement monitor, which we’re hoping puts us a little at ease while Kaycee is asleep.

    As much as we would like to say this has been a completely horrible experience, that statement would not be entirely true. Yes, the fact that our baby has to deal with these health issues is horrible, however, this path has put us in contact with wonderful individuals and organizations and has really shined a light on the good in people.

    – In August, even with the uncontrollable seizures Kaycee started kindergarten and her teacher, bus driver and everyone else at the school have been wonderful.

    – In November, through the generosity of the Chelsea Hutchinson Foundation, Kaycee was granted a trip for our family to attend Epilepsy Awareness Day at Disneyland. This allowed us to meet wonderful families with common concerns and gain valuable knowledge at the Epilepsy Expo. It was a truly wonderful experience especially watching Kaycee’s face light up with joy. We don’t get to see that as much as we used to before epilepsy.

    – Also, through the generosity of so many of our family, friends and strangers we have been able to begin the process of getting a seizure response dog for Kaycee. Sven, her service dog in training, is now 11 weeks old and while he’s still little, he is already in the midst of learning to be “Kaycee’s Keeper”. He still has a lot of growing to do and extensive training to complete but we can’t wait for him to be ready to be with Kaycee in late 2017.

    To sum it all up… if we were able to choose, we would obviously choose to not have to deal with the health and emotional issues epilepsy has brought to our lives. However, since, as with many things in life, this is out of anyone’s control, we choose to look at all the good that has come out of this experience. We will continue to be Kaycee’s biggest fans and advocate and fight for whatever she needs, no matter how bizarre we may sound to others; all while continuing to follow Kaycee’s lead… be positive, be happy and don’t let anyone or anything stop you from living your life.