Our Epilepsy Journey
1) What is your connection to epilepsy/seizures? My son started having seizures at age 2. He’s now 6, and we’re still on our journey trying to figure out why he has them.
2) Tell us a little bit about your journey. My son’s medical complications actually started at 14 days old with an infection that caused sepsis. He was sick often and had some minor delays through his first 2 years. Right after his second birthday he had his first seizure. He’s had several since that time. We are waiting for results from genetic testing looking at metabolic conditions, but right now there’s no absolutes. He tends to get his seizures when he’s coming down with an infection, but he’s had them other times as well. Many of his doctors have told us he needs more specialized doctors out of state, but we’ve been battling with insurance for a year now to get him where he needs to be. In a few months he will have to be moved 5 hours away to receive medical treatment. I will have to stay to finish my doctorate degree. The only thing that could change this is his insurance appeal going through.
3) What is a typical day like for you? His dad works nights, so I wake up with both of our kids around 6am if everyone slept that long, and get us ready for school on our own. I am a doctorate student and very often have to stay up late doing homework, plus my son has a lot of difficulty sleeping so typically if we get 4 hours of sleep during the week, that’s a good night. My son has to be woken to eat at night, so that can cause a lot of problems with our sleep too.
We run through a typical morning routine with the addition of medications, and it takes us about 1.5 hours to get out the door. We have a 30 minute commute to school and daycare and then I start classes. I am typically in class until 3pm. At that time I either go to work (I have 2 jobs) or pick up the kids on my days off. I also have late class some days. Dad picks up the boys if I cannot get them.
We have a strict routine in the evenings involving homework, dinner, meds and bed. We throw a little play in too of course. My son has to go to bed early since he can’t sleep well throughout the night, so we don’t have a lot of time. After he goes to bed we typically pick up the house and I start homework about the same time his dad leaves for work again. The hope is I get to bed with at least 4 hours of sleep time, but some nights I have to stay awake the whole night.
My son has a lot of appointments too, including PT weekly and psych every couple of weeks. We are constantly seeing different specialists, and when he’s not at one of those appointments we typically have to see our pediatrician for something. In the last year he’s seen 2 neurologists, an epileptologist, a cardiologist, a psychologist, a neuropsychologist, sleep medicine, ENT, and we see genetics/metabolics very soon. He’s also seen PT, OT, and ST this year.
4) What support do you have?? We have the support of distant family and friends, but do not have any family in the area right now because we moved for myself to finish school. It is tough being away from them, but we feel my schooling is important to provide for our son’s future. We have a couple close friends in the area, including our daycare provider who is amazingly flexible with us. My son’s pediatrician is amazing. He answers all of our questions and never makes us feel rushed. I always know I can send him a message about anything and as long as he’s working that day he gets pack typically within an hour. He’s seen us in the ER, and held my son through an IV start. My son loves him, and dressed up like him for hero day. We also have a great advocate and lawyer who are both truly invested in my son’s care and help us through our insurance battle. My school instructors and class have been very supportive as well.
5) What would you like others to know? The superficial layer that everyone can see is only a part of the effects of seizures and epilepsy. They don’t always see the days where we spend 5 or more hours on the phone only to realize at the end of the day we know no more about our son than we did at the beginning of the day. They don’t see the faded marks from falling asleep on yet another hospital bed rail while holding my son’s hand. They don’t see me crying in the hospital bathroom after the doctors tell us we’re too complex for them, but there’s nothing more they can do to help him get the care they know he needs. They don’t know that the only one on one time myself and his dad get together is in hospital cafeterias while the nurses watch our son, because very few other people are comfortable watching him. Mostly though, I wish others could feel the extreme happiness we have when our son accomplishes something he’s been working months or even years to accomplish. There is nothing to describe how happy that feeling is, and I don’t think anyone can really feel that until they’ve been lower than they thought they could ever go and then suddenly higher than twice what they ever imagined possible.
6) What has or would make a difference for you? Our online support family has helped us SO much. In Epilepsy, everything changes faster than anyone can possibly keep up with. One day everything is perfect, the next day you’re in a hospital with doctors asking if you approve of medications, treatments, and tests you’ve never heard of. Sometimes you’re being transferred by ambulance to a town 3 hours away with nothing but a cell phone and charger. Our online family is always there to tell us their experiences, offer advice, and pick us up on our down days.