November is National Epilepsy Awareness Month and for as much as epilepsy has impacted our family, you’d think I could easily write about it. Yet I’m sitting here with a blank screen. I wouldn’t really call it writer’s block since I only show up on this blog every now and then. I think it’s because I try so hard to go on as if epilepsy isn’t part of our life. Like if I don’t acknowledge its presence that maybe it will simply go away. But that’s not fair to Lola and it’s not fair to the readers of this blog. So lets talk about epilepsy and what it means to my family.
Today Lola is one month seizure free. This is exciting yet I’m hesitant to share this news with you because of fear that I might somehow jinx Lola. Since August, Lola has been battling seizures again. And every time we think she’s on the right dose of Keppra (an anticonvulsant) and Trileptal (another anticonvulsant), a seizure makes its way to the surface. So I haven’t talked about it much. In my head and on occasion to Rob I’ll say, “Lola’s been seizure free for a week now”. I’m always counting the days, but I’m also aware that at any given moment one can reappear and diminish any type of absent stretch she may have had. But for today, she’s made it to one month — the longest period of time since she began having them in August.
For almost as long as Lola has been in our life, so has epilepsy. Lola began having seizures when she was just under four months of age. We were living in Costa Rica at the time when she began to do this bizarre jerking motion. Rob and I instinctually felt as if something was wrong, but most people told us we were just worrying over nothing. Yet after almost 10 days of these “jerks”, I frantically started searching the internet. I happened upon a You Tube video of a little boy exhibiting the same weird movements. The commentary said the boy had something called Infantile Spasms or West Syndrome. I knew those movements were what Lola was having and so I curiously looked up “West Syndrome” and that was the first time I had ever associated epilepsy with our daughter. West Syndrome is also called Infantile Spasms. They are seizures that generally take place in the first couple years of life and diagnosis is confirmed with a hypsarrhythmia (chaotic brain waves) on an EEG. I read the description of West Syndrome and everything else went blurry except the sentence “rare and catastrophic form of epilepsy”. It was one of the scariest moments I’ve ever had as a mother because I knew my little girl had this awful condition. You can read my very first blog post about it here.
Lola would be put on a steroid treatment for one month to try to get the seizures under control. At that time her seizures came in clusters of anywhere between 5 – 40 seizures per cluster. It was horrifying to watch. She was quarantined within our home and no one but immediate family was allowed to visit. We were to record the seizures and report back to her neurologist. It was an excruciatingly difficult period of time because there was nothing we could do but wait.
I documented the 30 days of her treatment on our old blog called Live Love Travel Souls so that family and friends could keep tabs on her progress or lack of. Here are some snippets from that frightening time:
Day 1 – April 28th, 2011
“We have no picture from yesterday. I brought my camera to all of the appointments, but it seemed insignificant to take photos of my kid with machines hooked up to her. The mental image I have is one that will never go away.
Yesterday Lola began her Prelone treatment. Because it was so late in the day, she only received 7 ml of the medication. Her treatment program will be 14 days of 14 ml a day. On the 15th day we will gradually reduce the amount she ingests.
Lola was so exhausted from the day, she fell asleep at 5:30 pm. I don’t know if she had any seizures last night because she is the one that gets me up when she is ready to eat. Generally Lola will awake because of a seizure, but it is hard to say if she awoke because she was hungry or because she seized.”
Day 5 – May 2nd, 2011
“Lola was doing awesome yesterday. She hadn’t seized since 7:30 am and then at 10 minutes before midnight she began to have a cluster. This was the strongest that I’ve seem them. They will get worse before they get better. Usually she gets a little break between each seizure, but last night they were continuous. They made her little arms shake and while it was dark, I could see the strain in her face. It broke my heart. I know that these seizures don’t cause her pain, but it is incredibly hard to watch. “
Day 10 – May 7th, 2011
“…Lola’s seizure clusters are not subsiding yet. Today she has had four clusters ranging from 5 – 20 seizures. Rob thinks she is now grunting because she is fighting them. I woke up to these grunts at 3:00 am last night. I’m grateful that we have the co-sleeper because I wouldn’t want her to be alone when she seizes. I know she’s OK, but it at least makes me feel better to be there for her.
Three more weeks of treatment… I hope the seizures start going away soon.”
Day 19 – May 16th, 2011
“She had one seizure cluster at 3:00 am last night, but that is all we’ve witnessed thus far. I am still concerned about her eye contact. It’s as if she can see, but she just can’t focus on what she’s looking at. She looks at toys and was even following her focus on the dogs today, but she has a hard time looking straight ahead. I have yet to hear back from the doctor, but I’m trying not to over think any of this. I know we have a long road ahead of us, so all we can do is take this a day at a time.” **Our first suspicions of cortical visual impairment**
Day 26 – May 23rd, 2011
“If Lola makes it until 3:00 am without a seizure then that means she will be seizure free for one full week. This is a remarkable milestone as just four short weeks ago Lola was having up to six – eight clusters a day containing up to 40 seizures.”
If you want to read more excerpts, please follow this link and type in “seizures”. You’ll see Lola’s journey with epilepsy from the very beginning. You can read about all of the neurologist appointments, navigating the healthcare system in Costa Rica, the beginning of physical therapy with the amazing Moises, my neurotic fear-filled rants and much more.
While we try to go on as if epilepsy doesn’t have as much of a stronghold on our family, it really does. It is always here. It may not be front and center, but its presence never fades. Just last night I heard Rob say, “Lola are you OK?”. That sentence would mean so little to most of you, but it can be such a loaded question in our home. “Lola are you OK?” is generally said when we are unsure if she is having a seizure or not. We are trying to get her to acknowledge us so that we can put that momentary worry to rest. And usually she quickly responds, but too often over the last few months she hasn’t responded and that meant only one thing — she was having a seizure.
Most of her seizures took place at night. So when we would hear her cry, Rob and I would jump out of bed to find her coming in and out of a seizure. The crying always hurt my heart. Why was she crying? Was she frightened? Some epileptic patients speak of an aura that they feel prior to having a seizure. It’s almost as a way to let the individual know that something is coming. Not all epileptic patients report this, but some do. I often wonder if Lola feels an aura prior to her seizures. Can she tell that something is about to happen? Is she scared? Does it worry her? Is that why she cries because she knows she’ll need our help? Someday she’ll be able to tell us with words, but for now we’re left to wonder. Because of the frequency of night wakings, Rob began to sleep either with Lola or on the living room couch so he could quickly get to her. It becomes part of our normal, but now sharing it with all of you makes it not seem so normal after all. It is actually quite heartbreaking.
Remember Lola went almost three years without any clinical seizures (seizures that can be seen). She was having sub-clinical seizures in her slumber, but they weren’t detectable by the human eye. During those three years she remained on Trileptal. And just when we were getting ready to talk about weaning her off of it one day she seized. We were always told by countless neurologists that children who have had infantile spasms as a baby most likely would go on to have epilepsy. So we weren’t necessarily surprised by the onset of seizures, but it was still disheartening nonetheless. But for those that are close to me know that my phone is always on because of Lola’s risk for seizures. Up until recently, I never received those frightening phone calls. So the very first time ISBVI (Indiana School for the Blind and Visually Impaired) showed up on my phone in late August, I instinctually knew why they were calling. The nurse wanted me to know that Lola had a seizure. And the nurse called the next day, the day after, the day after that and so on. It is a parent’s worst nightmare to have the school call for medically related issues. My stomach sank every single time I saw ISBVI displayed as an incoming call, but I knew there was nothing I could do except listen and offer support. You see Lola comes out of her seizures and just goes on with her busy little life. Sometimes she will stay in a dazed state called postictal, but most of the time you’d never even know she had had a seizure. So while the nurse would call to tell me about Lola’s seizure activity, there really wasn’t anything that I could do except worry for my child. Thankfully those phone calls have begun to fade, but just like anything related to epilepsy — they can begin again in a moment’s notice.
Again, I’m sitting here writing this out and these are worries that parents of young children shouldn’t have to go through. These are just snippets of epilepsy in our lives. And sadly enough, there are children who have it much worse than Lola. There are children who have to be on cocktails of anticonvulsants to get seizures down to the double digits as in 40 a day rather than 200. There are children who have to have parts of their brain removed because all other avenues of treatment have been exacerbated. Our daughter is among the lucky — for now. That’s the horrible thing about epilepsy. You have no idea what it will morph into or when. I’m now a firm believer of taking life one day at a time because we just don’t know what tomorrow will hold. I wish I could be that advocate that says epilepsy has brought good to our lives, but that’s a lie. It’s a horrible neurological condition and I truly hope that someday, in our daughter’s lifetime, there will be a cure.
But let me be clear, just because Lola has epilepsy doesn’t mean she isn’t living an amazingly normal life. It’s just her version of what normal should be. She has taken an anticonvulsant medication every single day since August 28th, 2011, but she doesn’t mind it. She has had to go to countless neurology appointments, but it doesn’t bother her. She has had to be hooked up for numerous EEGs, but she still smiles (OK the last one she was rather pissed). Epilepsy is just part of Lola’s life just as some people have diabetes and others have high blood pressure. We can’t explain why Lola has epilepsy, but she does. Our job is to make sure she goes on living life to the fullest. And right now that means being happy going to school, terrorizing her brother, making new friends (new post to come) and being ridiculously loved by everyone who encounters her. So while I wish epilepsy would leave my daughter alone, I’m also prepared to spend my life raising awareness, advocating and hopefully helping another family realize that yes it sucks, but you know what — life does go on.