Today I’m sitting here on the couch with Lola sprawled out across me. She’s home sick for the second day in a row due to the annual ‘flumageddon’ virus. She gets it every year and this year is clearly no different. While I’m sad she isn’t feeling good, I’m elated with one important aspect of her illness — she hasn’t had any seizures.
For most epilepsy sufferers there are underlying causes that can trigger seizures. For Lola they are generally illness (fever or not), physical or cognitive developmental leaps, overexcitement, weight gain, and excessive tiredness. Yesterday marked one week since Lola has had a seizure. While I celebrate this one week seizure free milestone, I am especially hopeful the medicine increase is working because little lady is pretty darn sick right now and thankfully, she is showing no signs of seizures. This is good news.
Today I’d like to show videos of Lola’s seizures in an effort to continue to raise epilepsy awareness.
The first three videos are when Lola was just under four months of age. She was diagnosed with a rare form of epilepsy called Infantile Spasms or West Syndrome. These seizures came in clusters of anywhere from 5 – 40 seizures per cluster. They almost always took place when Lola was falling asleep, when she was asleep or when she was waking up. We took videos as proof to show the neurologist and if you suspect your child is having something similar, I would recommend doing the same. It is CRUCIAL that the child is treated right away.
You’ll notice how minimal the movements are which made Rob and me question if we were worrying over nothing. Thankfully we listened to our parental instincts that were telling us something was wrong with our little girl. Lola was diagnosed within 10 days of the onset of these seizures. The diagnosis of infantile spasms was confirmed with an EEG where a hypsarrhythmia (chaotic brain waves) was found. Lola was put on a steroid for one month and has remained on the anticonvulsant Trileptal ever since.
Lola’s epilepsy has morphed into something new and she is currently having partial complex seizures. Again they are almost unnoticeable, but you’ll see that her fists clench up, her eyes are sporadically moving and she is completely unresponsiveness to my verbal cues.
In addition to the Trileptal, Lola was put on Keppra and B6 in an effort to get the seizures under control.
While I hope and I pray that Lola will ‘outgrow’ her epilepsy, the truth is she may very well battle seizures for the rest of her life. And unfortunately there’s no way to predict what her seizures will look like. Epilepsy is one of those silent conditions that can morph into various forms without warning. As her parents, we will continuously be aware of Lola’s epilepsy. We will always look closer at odd movements, we will always be on high alert when Lola is fatigued or under the weather and we will always be diligent advocates for her health when we feel that something is off. I always have to remember that we know Lola best and more often than not, we have been spot on when something is wrong with our daughter.
A couple of years ago, I wrote an article for www.specialneeds.com called “Do You Know What an Infant Seizure Looks Like?” The piece outlined more specifics about infantile spasms and our experience with it. You can find it here.
My Elle Belle is still resting, but I’m going to sign off and cautiously snuggle with her (only thing worse than a sick kid is a sick mom). Please share this post to help others become aware of what seizures can look like. If we can help even just one family identify their child’s seizures, then we are doing our job as epilepsy advocates.