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.
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 …”
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)
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 as shit? You bet.
And remember, “epilepsy” is NOT a diagnosis.
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.
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.
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.
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.
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 …
Very good post on seizures, I like it (much better than reading official medical info).
I didn’t click on the link about wine enema’s, I would rather not know…
Sarah Palin – interesting!
Like you say, every kid is different. We have found that some of Sophie’s seizures can be stopped dead in their tracks by positioning her head properly…that is, if she is cranking backwards, move her head forward and the damn thing stops. This may have something to do with her scoliosis and/or the fact that the damage to her brain was on the brain stem, so neck position is important. I find so-called “partial” seizures to be the worst because the poor kid goes through all the crap and is aware of it…blech. If seizures aren’t caused by Satan, are they caused by any demonic sort from Single Dadism?
What prompted this particular post, the scope and the breadth of it? I’m fascinated to know the answer, cause it came a little out of left field with what you usually write about.
Oh,my,oh my … where to weigh in here.Well,I suppose with the fact that I do fear seizures.A lot. And don’t mind saying it.And with that said we do have the “lots worse” .. stroke for one, which when you go around in circles, seems to be the root of the seizures.In Zoey’s case, Infantile Spasms.Scary to look at outwardly ..not necessarily.Hard to watch outwardly … absolutely.EEG reading … terrifying.I have written this next thing,a number of times over the course of the last 20 months and it is this …Zoey also has leukemia to add to her resume and I do have to say that the dark days of seizures and the inability to find the tools to bring her back to us,was,in many,many ways far more frightening than cancer.Weird to some,probably, but here in this house the word seizures evokes a profound epileptiphobia state of existence.
I write too much about seizures, and when I first read this post, I raised my eyebrows at its simplicity. I think the relentlessness of the seizures and the fact that they have gone on in my daughter for over fifteen years with little relief is what fills me, often, with rage. I have studied, a bit, the affects of epilepsy on the psychology of families — and it isn’t pretty. Epilepsy is profoundly unique in the realm of “special needs” and I’m not sure anyone has ever really articulated why —
Oscar has 1-3, sometimes more, tonic seizures a day at present. They are relatively short lasting – between 1-2mins (sometimes a little longer)- but he stops breathing and loses consciousness every time and they are very intense. Afterwards he is filled with gas which needs to be vented through his gastrostomy. He is exhausted and usually falls asleep immediately after. Often he cries out in fear and there is a terrified look on his face. If he has 3 or more of these fits a day he gets really unhappy and agitated ,not able to relax, to sleep or rest. He is so tense and wired he needs really strong sleeping med (chloral hydrate) to sleep. Also throughout the day he seems to have lots of subclinical activity and an uncountable number of myoclonic jerks.
He also has terrible bowel problems as a result of the kind of cancer he had which affected the nerves in his bowels and possibly the bowel resection he had. There may be a lnk between his bowel problems and his intractable epilepsy but it seems it is impossible to know for sure. The obvious cause of his epilepsy is the brain damage he suffered at the age of 3yrs, but still the bowel problems may be adding to this.
When epilepsy is this bad it has a massive impact on all the families lives. I found Elizabeth’s last comments interesting. In some ways I feel like epilepsy is an invisible illness especially when it comes to asking for more support, and when it is available it is very difficult to organise due to the unpredictability of our daily routine.
We have had the same neurologist since Oscar was diagnosed. He is a great guy and I have lots of faith in him. The thing is, when you get a kid with intractable epilepsy, none of them have any answers, apart from trying more drugs( and if the child doesn’t respnd well to the first few drugs it is unlikely they are ever going to find a drug that will completely control the seizures) they just don’t know.
You haven’t mentioned epilepsy surgery in your post. Currently we have been given a slither of hope in that there is a chance that radical surgery may improve my son’s epilepsy. After everything he’s been through I never thought I’d be able to even contemplate putting him through brain surgery. And just so you get a picture of how radical this surgery is, in the past it would have involved removing an entire half of the brain. However the advances in brain surgery over the last 5-10 yrs mean that they now leave the brain in and ‘simply’ sever all connections between the two halves. Since one side of Oscar’s brain is so badly damaged and he is hemiplegic, we have been told the operation will not mean he will lose more skills. Nothing’s definite yet more tests need to be done, more questions asked etc but at this stage it is looking like a possibility.
Oh dear I hope I haven’t depressed anyone. Is this too much of a rant? Remember I think my son is an extreme example. Apparently 75% of people with epilepsy have their seizures controlled with drugs. Thanks for giving me an opportunity to share.
Ken: The primary reason for the post was that on one day last week two parents told me of their fear of seizures starting, while a close friend was dealing with her daughter’s silent TIA (mini stroke like thing). I felt the need to get some basic information from my point of view out there. Hopefully it will help some people such as Zoey’s mom.
Elizabeth: I understand everything you are saying. Yes, you have written much more than I have on the topic, and yes, I approached it in a simplistic way, purposely. I did not go into the terrifying fear nor horrific rage that, at times, I too have felt over the 17 years of seizures. Nor did I talk about my friend’s son who died from a complication of a seizure nor the time I not only needed to call an ambulance for one of Pearlsky’s episodes (and, being a macho paramedic myself, it took a lot to call for help) but I put the C-collar on her and had to back board her first. The reason for the post was to try and convey that an unhealthy fear of seizures is not necessary, that they very well may be more manageable and less of a nightmare than one envisions. In my (warped) mind, there are greater fears, such as silent TIA’s and strokes, that you do not necessarily know are occurring and that you cannot manage at home.
As for your last line … “Epilepsy is profoundly unique in the realm of “special needs” and I’m not sure anyone has ever really articulated why – ” that is great food for thought and I hope one of us works on that idea.
Lynn: You are always welcome to share. I know there are many among us that keep you in our thoughts and wish only the best for you and Oscar. Please keep us informed.
“Epilepsy is profoundly unique in the realm of “special needs” and I’m not sure anyone has ever really articulated why”
Epilepsy isn’t “sexy”. Epilepsy isn’t something you can put on television with our kids and unless there’s a seizure in progress, you often don’t say “man, there’s something wrong with that kid, I’d love to help.” Before you went down this rabbit hole, did you ever even hear of SUDEP which kills more people than MS and MD per year, combined?
Epilepsy, like our particular brand we’ve got here, Infantile Spasms is a bucket diagnosis. Buckets aren’t sexy, and don’t get the research dollars, nor the publicity, nor the attention.
I found this post very interesting for personal reasons this time (usually I find your posts very interesting even though they have nothing to do with anything I face in daily life).
My grandma (age 83 or so) has recently been “diagnosed” with epilepsy after having had 2 seizures a couple of weeks apart.
Ofcourse they immediately started her in various meds and within no time my grandma was even more of a vegetable than she already was the past 1-2 years (the pig-valve in her heart is over 20 years old now and starting to give up).
They changed her meds and now she’s on her normal activity level again. But your post makes me wonder if she even should be on meds, instead of just having a syringe around for the occasional seizure…
A friends mom also said that getting epilepsy at a later age can often be a symptom of a brain tumour….
It can be. My son had a brain tumor that was causing his. Curious…when your grandmother had her seizures, they just put her on medication? They did no EEG of any kind? No MRI of any kind? Generally, and I am by no means an expert, a Neurologist would try to figure out the cause of the seizure in addition to prescribing a medication to try to treat the seizures.
Googled at random “single dad with disabled kids” and this post came up. My wife moved out before Xmas and I am sitting in bed next to my youngest (11) son that was diagnosed Lennox Gastaut syndrome. Born healthy then triggered by his second vaccine @ 6 months of age.
It was like a bomb going off that continues to deliver pain every day since. Not just for our family, but our extended families and friends as well. I say friends though I have precious few that have remained intact or in touch over the years. We were virtually left alone to deal with this for the last 10+ years. The stress has taken it’s toll on everyone.
I tried to find a “fix” my son for the first year, intensely searching the web for answers. Traveled to Rochester (Mayo), Homeopaths in Calgary/Winnipeg/Ottawa, ketogenic teams here in Saskatoon and later Hopkins trained team in Edmonton. I had just accepted a new job when his seizures started and after 6 months I ran out of gas.
The employers had no empathy and I struggled to work and run back and forth to hospitals etc. Our older son was “along for the ride”. I succumbed to anxiety disorder and had to take anti-depressants for awhile. Never quite been the same since ie panic attacks. I continued to work but my job seemed unimportant now..no one new what was going on at home. My wife and I were at first joined together in our fight to make things right. Slowly we turned on each other – to the point where I’d routinely come home from work exhausted and be greeted with Kirk in a full on seizure – then begin yelling at my wife. I had run out of patience, energy, ideas…and yes a more times than I want to admit…want to go on. I have felt so alone.
We never went out. 1 movie and 4 meals out in 10 years for us. Events like weddings came and went with the two of us always visiting quickly then retreating to tag the other with Kirk off for an equally quick visit. 6 years ago my mother died and I barely took time to mourn – I am convinced her cancer was fueled by the loss she felt for our son.
5 years ago I lost my job of 20 years..no fanfare – the employer seemed relieved. We sold our retirement revenue home and coasted for a year. Eventually my wife got tired of waiting and watching our savings disappear and went to work. I stayed home to regroup, taking the time to get to know my sons and in particular deal with the fear of being left alone with Kirk. He slept with my wife since it happened in December 1999..and has spent 1 night overnight away from us in all that time. We were/are petrified to loose him in a seizure through the night…he routinely has several as you’d pointed out. Going to sleep, middle of the night (very subtle but stops breathing or breaths into pillow face down). We get government paid respite 3 mornings a week and couldn’t afford any more. How can a person work let alone have a life.
4 years ago my wife and I agreed to separate and I moved in our suite downstairs. I took a $13/hour job cleaning out donated clothing bins to pay for my share of the rent because I couldn’t face working as a creative director anymore. 3 years ago my brother was diagnosed (44) stage 4 colon cancer and had 7 major surgeries in three years to try to save him.he died last month. My wife lost her brother to esophageal cancer in May 2009 (47 family of four) and her father 2 months later in July when his truck rolled after massive heart attack.
My wife stayed with her job for several months afterward then took an extended leave of absence from the Health District..after 3 months of leave they abolished her position in Feb of 2010. I was working at home freelancing by this time and had moved to bedroom upstairs as we needed to rent the basement suite for income.
In April I took my oldest soon (just turned 13) to Mexico while Sheri was off work to try to give us some badly needed time away. We returned to find he was up in the night peeing..lots..and then a quick to the all to familiar ER delivered a diagnosis of Type 1 diabetes – triggered by a bug we picked up in Mexico.
That seems to have been the straw that sealed the deal for our divorce…my wife wanted out in August. I was/am numb and so haven’t fought her..my brother was dying and needed my attention in Calgary 600 miles away. As I said he died last month and now my wife has a new house a few miles away and we are attempting to co-parent the kids each alternating weeks.
I do enjoy my bittersweet time alone on each week I get to have a life again..but I know the kids are paying yet again for something that isn’t there fault. So here it is New Years day and I hardly saw it come and go…can’t imagine what lies ahead and still very much numb. Starting to realize my family is gone…along with the dream I should have buried years ago. It’s hard to live without hope..that your child will get better – that this nightmare will end some day. One day at a time doesn’t really get you planning for the future..but it’s keeping me alive.
Thanks for sharing ..it helps a little knowing I’m not completely alone. Love you all.
Wow Scott. No, you’re not alone. Unfortunately you carry a membership card in a club that far too many parents have to carry. Yours is made of lead though, brother. Holy shit.
Thanks for sharing your story. Hate to hear yet another vaccine-related seizure event that devastates the life of another child. Makes my skin crawl. Did you file a claim with the U.S. Government? You can, you know, and I do not believe there is any statute of limitations on it. I’d have to check.
Thanks Kenneth. We live in Canada and there is no compensation or way to persue legally. The injury reporting system here is a joke – Kirk’s and others I know were never included in clinical trial data. Did write/talk to your FDA though to warn them of the potential problems with the vaccine that was trialed here then licensed for use there in 2006..I tried 🙂 I’ve come to realize both of my son’s have immuno-related problems that predisposed them to injury. Tried to get gov here to entertain epidemiological screening to help reduce injury via reaction to components..but no one wants to entertain vaccines injure. Take care Ken.
Good God, Scott. What Ken says, your membership card is made of lead. Best I can offer you atm is *hugs*.
Scott, I’m very sorry to hear about your son and the fallout of his condition; it’s a whole lot of weight to carry for anybody. My daughter’s seizures are not caused by a vaccine injury, rather they are the results of some messy chromosomes. Nonetheless, they suck just as bad. I wish I could offer you some word of wisdom, something helpful that would make you feel better, but all I can say is that we can relate, we understand and you are definitely not alone.
Thanks for all your supportive and encouraging words. Want to clarify that my intention by sharing was to shed light on a dark part of many families worlds. What is paramount to me is that the children with disabilities and their families get the needed support from the community at large. Either through funding or respite – regardless of the circumstances which lead to their disadvantaged conditions. That was/is a separate concern – love ya.