It's a day that I will never forget, and each year I remember a new detail. Little Miss M convulsed for about 10 minutes. A Generalized Tonic-Clonic Seizure they told me. A new term for Grand Mal. There were nine paramedics standing over her when I flew into the daycare, driven by a friend. There were scared daycare staff; there were fire trucks and ambulances. There was my baby, who recently turned one, lying motionless on the floor. There was an ambulance ride, phone calls, and doctors in and out. They assured me it was a febrile seizure and nothing more, very common in childhood; although hers was much longer then is typical. I nodded my head, but insisted I was not ready to take my baby home. Call it mother's instinct or parent's intuition, whichever rings true for you. All I know is that, just two hours after her first seizure, Little Miss M went into another GTC, lasting half an hour with multiple doses of rescue medications. That's when the mood in the room changed from routine care to a true emergency; more bloodwork, a spinal tap and a hospital admission. I was again told that this would probably never happen again; it was just complex febrile seizures. That was until they did her EEG, pasting electrodes all over her head and asking me to hold her as still as possible. The test was 24 hours after her last seizure, while the meds were still in her system. In a 45 minute recording, Little Miss M had 15 seizures. The doctors were shocked, and the investigations delved further.
Do you have a similar story?
The truth is epilepsy effects a lot of people. According to www.epilepsyfoundation.org, 65-million people around the world have epilepsy and that doesn't include the people who have had just one seizure.
The textbook definition of epilepsy from (http://www.ncbi.nlm.nih.gov/books/NBK2609/) states:
My question becomes, if so many people have epilepsy and so many more have had a seizure, why is it so scary? As a caregiver, my heart stops every time Little Miss M has a seizure or an event that resembles seizure activity. I worry about her neurological well-being and her physical safety.
We have dear friends whose daughter has Dravet syndrome. We met when Little Miss M was tested for Dravet and we've formed a life-long bond, as the girls are close in age and development abilities. Through the years we've also found that Little Miss M's disorder, though still unnamed, is close to Dravet in many aspects. Our little friend seizes frequently, and it's scary every time. It's scary because you just don't know if it's going to stop.
I find that the longer we walk the road paved with seizures, the less I am able to sugar coat it. If your child has had a seizure, they will most likely be absolutely fine. They may suffer no cognitive impairments, and they may never have another seizure again. For whatever reason, the day they had their seizure, their brain was unable to handle the stress and sent out the seizure signal to the body (yes, those are layman's terms!). To the same point, if your child has multiple seizures and is diagnosed with epilepsy, it is extremely likely they will respond favorably to medication therapy. From Epilepsy Foundation: It has been estimated that at least fifty percent of all patients with epilepsy gain complete control of their seizures for a substantial period of time. Another twenty percent enjoy a significant reduction in their seizures. Then, there is the other thirty percent, whose seizures are considered intractable. This is the population who undergo multiple trials of different medications, who try diets and surgeries, all in an effort to control their seizures.
I had three febrile seizures when I was a baby. I experienced no cognitive impairments that I know of and did not need to be put on anti-epileptic medication. Little Miss M, however, has had multiple seizures of varying types. She has been on seven different anti-epileptic drugs and is currently on the Modified Atkins Diet, in addition to drug therapy. Whether it's the seizures, the autism, or something else that has caused her developmental struggles -- I really don't know. However, it's hard to look past the fact that I had a typically developing infant until the seizures started.
Yes, seizures are scary. Whether the big convulsive type you see in the movies, more commonly known as Generalized Tonic-Clonic or Grand Mal, or a partial seizure where the person seems frozen in place, it doesn't matter. As the bystander or the caregiver, it's scary when you are unable to stop a seizure. It is very easy to feel helpless, because you cannot see what is happening. As the person who is seizing, it is scary because you cannot control what is happening. Many times, you may not even know what is going on, and you may just wake-up feeling like something happened. There is protocol for handling seizures, and there is training that every person should go through.
K-Bear watched a seizure, and asked me what was happening. I tried to explain that the brain is like a computer, and like her computer, sometimes the brain freezes or reboots. I told her that sometimes our brain needs medicine and special doctors to help it stop rebooting and that sometimes it doesn't work. I tried to assure her that the person was okay and they just needed to rest and reboot their brain. She's four; this will not be the last time she asks the question, but I want her to know it's okay to talk about it.
Just because seizures are scary or they make you uncomfortable, does not mean it's acceptable to pretend they don't exist. In order to make any changes or to improve anyone's quality of life, we need to have open and honest conversations about what seizures are. I've been around enough seizures these days to know that other kids are not half as bothered as adults. My message: It's okay to be scared by a seizure. It's okay to be unsure of what's happening because even those of us in the trenches feel that way at times. However, it's not okay to pretend that seizures don't exist at all, and it's definitely not okay to shun a person from activities because they have seizures. Educate yourselves and those around you on how to handle a seizure and what is the appropriate response. I thank you in advance for taking time to do this.
Amanda has seen too many seizures and in addition to writing here, volunteers full-time as a founding board member for Dravet Syndrome Foundation. www.dravetfoundation.org