Epileptiphobia : \ˈe-pə-ˌlep-sē-ˈti-ˈfō-bē-ə\

Epileptiphobia: an exaggerated usually inexplicable and illogical fear of seizures, typically those occurring in a loved one

Pearlsky’s first neurologist was (not) affectionately known around here as Dr. Doom (seriously). We did a nationwide search for the best neurologist for microcephaly and found the editor of some fancy shmancy medical journal, and he happened to be five miles away. He was (is?) a real puke, but did get two things absolutely dead nuts right. First, her eyesight would improve and second, she would have seizures by about eight months of age.

Starting around eight months, Pearlsky would wake up in the middle of the night in distress. She would be crying, her cries turning into screams. I would hold her, rock her in our chair, try to find the source of pain. Tylenol did nothing. Her cry would change pitch, go from a normal cry to a sound imitating a cat fight (the small furry animal, not the two hot bikini-clad women in a pit of mud). Night after night, two or three in the morning, holding Pearlsky as she screamed in pain (seemingly). Need I explain what this was doing to me?

The doctors had nothing. I would describe it, and … nothing.

Then one night, an epiphany (Archimedes has nothing on Single Dad). I gave her a bolus of diazepam (Valium). Within thirty seconds, literally, thirty seconds, she was quiet and smiling at me.

Diazepam does not eliminate pain. It can relax muscles and eliminate cramps, but those are obvious and were not the case with Pearlsky. It does, however, stop seizures in their tracks.

We now had a reason.

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Seizures were originally thought to be religious experiences or demonic possession. Although I still feel that way sometimes, we now know better. It was in 400 BCE that the Greek physician Hippocrates got it right in his book On the Sacred Disease. Refuting the idea that epilepsy was a curse or a prophetic power, Hippocrates proved the truth: It’s a brain disorder. “It is thus with regard to the disease called Sacred: it appears to me to be nowise more divine nor more sacred than other diseases, but has a natural cause like other affections …”

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Epilepsy is a brain disorder that causes people to have recurring seizures. The seizures happen when clusters of nerve cells, or neurons, in the brain send out the wrong signals. People may have strange sensations and emotions or behave strangely. They may have violent muscle spasms or lose consciousness.

Epilepsy has many possible causes, including illness, brain injury and abnormal brain development. In many cases, the cause is unknown.

Doctors use brain scans and other tests to diagnose epilepsy. It is important to start treatment right away. There is no cure for epilepsy, but medicines can control seizures for most people. When medicines are not working well, surgery or implanted devices such as vagus nerve stimulators may help. Special diets can help some children with epilepsy.  ~National Institute of Neurological Disorders and Stroke (from the US National Institutes of Health, NIH)

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There are a gazillion types of seizures, leading to a gazillion “epilepsy syndromes” … all meaningless classifications for this discussion. Just having one seizure often will result in a diagnosis of “epilepsy.” As for what causes the seizure, that may matter for the ultimate treatment, but not for the meaningless diagnosis. To give you an idea, here is a PARTIAL list of types or category of seizures:

Absence seizures, atonic seizures, benign Rolandic epilepsy, childhood absence, clonic seizures, complex partial seizures, frontal lobe epilepsy, Febrile seizures, Infantile spasms, Juvenile Myoclonic Epilepsy, Juvenile Absence Epilepsy, Hot Water Epilepsy, lennox-gastaut syndrome, Landau-Kleffner Syndrome , myoclonic seizures, Mitochondrial Disorders, Progressive Myoclonic Epilepsies, Psychogenic Seizures , Reflex Epilepsy, Rasmussen’s Syndrome, Simple Partial seizures, Secondarily Generalized Seizures, Temporal Lobe Epilepsy, Tonic-clonic seizures, Tonic seizures, Psychomotor Seizures, Limbic Epilepsy, Partial-Onset Seizures, generalised-onset seizures, Status Epilepticus, Abdominal Epilepsy, Akinetic Seizures, Auto-nomic seizures, Massive Bilateral Myoclonus, Catamenial Epilepsy, Drop seizures, Emotional seizures, Focal seizures, Gelastic seizures, Jacksonian March, Lafora Disease, Motor seizures, Multifocal seizures, Neonatal seizures, Nocturnal seizures, Photosensitive seizure, Pseudo seizures, Sensory seizures, Subtle seizures, Sylvan Seizures, Withdrawal seizures, Visual Reflex Seizures …

It is not like in the movies or on TV. Your kid probably won’t start shaking and going crazy (although s/he may). You won’t need to (and don’t ever) put anything in their mouth, etc. They may just be laughing uncontrollably and inappropriately. They may appear in pain. They may just “zone out.” They may shake. Or a million other things. Or maybe nothing visible, you may not realize it. But trust me, soon you will know.

Scary? No.

Scary as shit? You bet.

And remember, “epilepsy” is NOT a diagnosis.

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The vast majority of medical literature states that seizures themselves are not harmful to the brain, that is, they do not cause (more) damage. There are some recent studies that question this, but overall, the agreement is that a seizure is not harmful. If the seizure causes physical movements, those may be harmful in that the person may fall, hit something, etc. Also, (in the category of “duh”), having a seizure while driving may in fact prove to be harmful. But bringing it to our kids, if s/he gets through the seizure, generally they are fine. Some seizures may cause breathing issues, Pearlsky has been known to throw up during a seizure, etc. so there are secondary issues to be concerned with.

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Contrary to popular beliefs, seizures are not always easy to diagnose. Seizures can happen deeper in the brain than an EEG will measure. Pearlsky has had seizures while being recorded on an EEG and they have not shown themselves.

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We all have a seizure threshold. Most people will have seizures if their body temperature exceeds a certain level. When she was younger, Pearlsky’s seizure threshold was 102.8. Yes, exactly. And you can bet your sweet ass I did everything I could to keep her below that magic number, and learned many ways to do it. She would also have a seizure everyday upon waking up from an afternoon nap. Everyday, for years. It turns out that our bodies are more susceptible to seizures when we are hungry, tired, or during sleep state changes (for years Pearlsky would often have a seizure about 45 minutes after falling asleep at night, at her first sleep state change … entering REM). The concept of a seizure threshold goes further, there is a point where a given amount of a given medicine will keep most seizures away, thus a threshold. There will always be some “breakthrough” seizures, but in general, a threshold exists. These breakthrough seizures are the ones we generally need to deal with, they are the ones that “break through” the meds, that just happen anyway. For what it’s worth, Pearlsky appears to have outgrown something that caused many of the breakthrough seizures. We are down to at most one or two in a week. The change appears to have come along with her last stages of puberty.

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We try to prevent seizures with medication. Almost universally, we can medicate a person so that they won’t have seizures, but the issue is what is their quality of life? Enough seizure med will make one very dopey, drowsy, unresponsive, etc. It is an art (remember, medicine is NOT a science, it is an art). There are many seizure medications that work different ways and infinite levels of doses and combinations.

An individual seizure can generally be stopped. That brings us back to “mother’s little helper,” diazepam (i.e.: Valium). There are three generally accepted methods of administering diazepam … orally, intravenously, and rectally. For those that don’t know, any medicine can actually be given rectally (liquid ones in particular), and they are absorbed very quickly. (Far be it from me to link to coffee enemas or death by wine enema at this point). Intravenously (injection) is the fastest, and oral is the slowest. Diazepam will stop just about any seizure, it is very inexpensive, extremely well known, actually very difficult to overdose, and easily administered.

Diazepam and plastic do not mix, it loses its effectiveness (potency) very quickly. You cannot keep a syringe of diazepam around, you cannot even add it to the top of an IV drip, by the time it goes through the tube it is useless. In the 1990’s some company decided to mix diazepam with carboxymethylcellulose (a really cool thick gel) and put it in a glass ampule in a plastic delivery system. With a pre-measured amount, you now have an always ready rectal syringe of diazepam. Around here we call it “tushy medicine.” The only drawback is the $90 price point. With lifetime limits on insurance (still?), there needs to be a better way.

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Over the years, I hear from parents who are told that their child will have seizures. Basically, any severely disabled kid is assumed to be a candidate! The brain and entire neuro system is delicate and when something goes wrong, genetically or otherwise, seizures can happen.

What follows is Single Dad’s philosophy, thoughts, warnings, and support when it comes to said crapola.

There are lots of things worse than seizures. Liver failure and strokes come to mind. They are silent. Seizures are in your face. It may take a while to be able to identify a seizure your kid is having, but once you do, you know them. Pearlsky’s major seizures are easy, close your eyes and if it sounds like two cats fighting, SEIZURE! Smaller ones, we think of them as “neurological events” show in her eyes, her eyelids flutter and her eyes are “vacant.” No, I can’t describe that, but you know it when you see it.

Seizures can usually be managed. It may take lots of experimenting with different meds and doses, but it can be done. Some families lean towards non-traditional meds, and if that works, great. Because of various reasons (another post), we keep Pearlsky’s med level at such a point where she is always right on that threshold. Missing one dose can, and does, put her over the edge. Usually, you can miss a dose since the drugs have a respectable half-life. We dance around several issues, one being that too much of a certain med that works great for her does effect her liver (and that can never be “in a good way”). Pearlsky is actually on two seizure meds (not unusual) with diazepam as the back up. As a generalization, an individual seizure can be stopped. Yes, I am sure there are instances where this is not true, but for most of us, an individual seizure can be stopped and no internal harm will come of it.

Stopping a seizure disorder is tougher. As mentioned before, you can medicate to the point of no seizures, but in some that means being completely sedated, not usually an option. But for those of you just starting out in this club of ours, there should not be a great fear of seizures starting. Fear won’t stop them. To some extent, education and preparation will help.

Find a good neurologist. This is an area where bedside manner is not as necessary, and to tell you the truth, I have yet to meet a neurologist I would be friends with. Somehow it seems the good ones are … well … different. But I trust them. With Pearlsky’s life. So, if you think your kid may have seizures, now or in the future, find the doctor. Get a consult before, they may want an EEG, for a baseline or to see if you are missing some seizures now. Sometimes you just don’t know (Erika’s post on the Bean).

Talk to said neurologist and INSIST on a plan of action if in fact you recognize a seizure and it is a big one. Personally, I would demand a prescription for Diastat. Period.

Don’t read too much. As some in our club will tell you, not all kids have seizures that in fact can be controlled. I know some of my readers have children with major daily breakthrough seizures. Other have kids where they basically ignore the little daily seizures intentionally. Every child is different, every plan is different, every reaction is different. Reading too much will just freak you out and not help, unless you have a SPECIFIC diagnosis (of which “epilepsy” is NOT). If you know the SPECIFIC brain abnormality that does / will cause seizures, or the specific genetic defect, or whatever, then research may help, but only if your kid is “textbook,” and you know that just never is the case. Every kid is different, it’s an art, not a science.

In almost all cases, seizures can be dealt with, they are visible, and usually, not caused by Satan. Around here, we blame Sarah Palin.

I have lots of seizure stories, some funny, some scary. Let me know if there is interest and I’ll share …