Epilepsy

[pluckyduck]

I am flabbergasted to report that I'm 99.9% sure that my Dan has Epilepsy.



I had no flippin' idea what Epilepsy really is. The school nurse called Don on Thursday to say that she thought Dan might be having what is called "absent seizures". Don tells me when I get in the door from work, and my reaction was more or less that I wished people would mind their own damn business. I'd certainly know if Dan had Epilepsy, for crying out loud...Dan has learning issues. He's somewhere in the autism spectrum, though impossible to classify as one thing.

So, little Miss Smarty Pants (that would be me), went to the Epilepsy Foundation website on Friday morning, and got a real education.

There are absent seizures, simple partial seizures, and complex partial seizures that look nothing like what I thought of as an Epileptic seizure.

Not only do the things I know about some of what Dan goes through fit complex partial seizures, but, get this.... I just put a huge puzzle piece about my own childhood together. I had simple partial seizures all throughout my childhood.

http://epilepsyfoundation.org/answer...es/simple.html

I outgrew them by the time I got to my late teens...last episodes I can remember were one or two in my early twenties.

I am flabbergasted. I am usually "up" on everything. Can't believe I was so ignorant about Epilepsy.

I've got a 9am Monday morning doctor's appointment for Dan in order to get a referral to a neurologist. (Tried to go directly to a neurologist, but they wanted a pediatrician referral.) Dan will need an EEG at the neurologist, and then we can start trying meds to get the seizures under control. (I suspect that Dan falls into the group that has many small seizures a day....he "zones" out at least a couple of times an hour.)

Epilepsy is often misdiagnosed as ADD or much worse. (I thought I was crazy when I was a kid....I told my mother a few things that were happening to me, but held a lot of it back.)

I thought this was what Epilepsy is:

Generalized seizures happen when massive bursts of electrical energy sweep through the whole brain at once, causing loss of consciousness, falls, convulsions (also called tonic clonic seizures) or massive muscle spasms.

That's just the most dramatic presentation of Epilepsy, you know where you call 9-1-1 and try to keep the person from swallowing their tounge or something. Partial seizures involve just part of the brain and are by far the most common. Electrical surge in a part of the brain can cause all kinds of distortions in the senses...and the person can be fully concious and remember everything. I went through a year where I heard music playing (same tune, marching band).... I was eight and I thought I was nuts. (I didn't hear it for the whole year, I would just have a spell come upon me where I heard it.)

Dan seems to have complex partial seizures. He zones out and into his brain. Poor kid has been trying to tell me about this for years. He's said to me "I wish I could pull my brain out so you could see it."

Now, I understand.

http://epilepsyfoundation.org/answer...s/complex.html

So many questions!

Does he really have a language disorder????

During a complex partial seizure, a person cannot interact normally with other people, is not in control of his movements, speech, or actions; doesn't know what he's doing; and cannot remember afterwards what happened during the seizure.

Although someone may appear to be conscious because he stays on his feet, his eyes are open and he can move about, it will be an altered consciousness, a dreamlike, almost trancelike state.

A person may even be able to speak, but the words are unlikely to make sense and he or she will not be able to respond to others in an appropriate way.

http://epilepsyfoundation.org/answer...s/complex.html

The Epilepsy Foundation website says that some children can have hundreds of seizures a day.

I am dumbfounded.

What did you know about Epilepsy?

Andrea

[CurtisEdmonds]

Where I come in contact with epilepsy most often in my line of work is with computer displays or TV shows (Pokemon, etc.) that have flashing displays that can cause seizures. Something to watch out for, possibly, if the seizures are linked to photosensitivity.

[mtbat]

Andrea-wow-if that's what is going on, wow-there have been so many huge changes in how they treat epilepsy in the last few years, there are meds that can really help, other things too-I know a little-I had a roomate who had grand mal seizures, she would wake up in the middle of the night screaming out my name, I'd have to run in and grab her, hold her and prevent her from hurting herself or biting her tongue-when they switched her meds-she stopped having seizures.

one of our old girlscout leaders had horrible seizures for years, they did something(and forgive me I cannot remember what) and she's been seizure free for 5 years.

(((HUGS)))

[drmomentum[$]]

Amazing! I wasn't aware of any of that.

-JP

[lyagushka]

Well, I have an epileptic aunt. She controls her grand mals with phenobarbitol, and has for years. She was hit over the head with a baseball bat as an adolescent. (Accidentally - kids messing around.) I've never seen her have a seizure, but I was told in detail what they look like and what to do if one happened when I was with her.

Also, it turns out my cat has epilepsy. Apparently, this is extremely rare. It's pretty weird when he has seizures, luckily it doesn't happen often. But when it does, he might have 3-5 seizures in a day. They seem to be along the lines of the milder seizures you describe. He walks backwards, arches, his pupils dilate, sometimes he looks like he's trying to step over obstacles, or just twists around. The seizure lasts for a minute or two and when he comes out of it he's a bit disoriented and freaked out. I decided not to medicate because the vet said once I start him on pheno, I can't ever stop. We travel too much to make this a practical treatment.

Good luck with your child. Maybe now that you know this his treatment can make life better for you all.

[jgibson2[$]]

Andrea,
Don't feel too bad. A friend's mom was FINALLY diagnosed with epilepsy well into her 60's. She'd been hospitalized for "psychosis" repeatedly throughout her life. She's appropriately medicated now, and hasn't been hospitalized for "psychosis" in 8 years.

[magenta321]

Andrea, I don't know too much about seizures, but I was tested for them. Hopefully things aren't this barbaric any more, but when I was tested (thirteen years ago), I was strapped to a table, hooked to an EKG, and had a strobe light over my head. The strobelight was meant to invoke a seizure if I was having one.

I also had to have an MRI to make sure there weren't any abnormalities in my brain.

I was lucky. I just had migraines, and nothing worse. But, the seizure test, unforunately, was one of the worst medical tests I ever had. I always hated strobe lights anyway. Ug. That test was torture.

[pluckyduck]

Originally posted by drmomentum
Amazing! I wasn't aware of any of that.

-JP

JP -

Now that makes me feel better. You're aware of virtually everything.

Don't feel too bad. A friend's mom was FINALLY diagnosed with epilepsy well into her 60's. She'd been hospitalized for "psychosis" repeatedly throughout her life. She's appropriately medicated now, and hasn't been hospitalized for "psychosis" in 8 years.

Judy, from what I've been reading, that's way too common. The electrical surge in partial seizures can affect the sense part of the brain. For a brief period your brain can hear, see, smell, feel and even taste things that aren't there....depending on their symptoms, epileptics can easily be misdiagnosed as schizophrenics. (I heard music, the same damn tune, a couple of times a day for a period in my childhood....if that kept up, at what point would they have carted me off? )

I had another year in my childhood where I was plagued with de je vu'...I'd be flooded with an unshakeable feeling this had all happened before and then time and space would feel distorted. I remember thinking this was what Alice must have felt like when she went down the hole.

I started this thread in the kids and family forum, rather than health, because I'm stunned that I wasn't armed with this info as a parent. What I've read about learning issues could fill a small public library, and I never ever read one thing in any of those books, articles or websites about the possibility of epileptic seizures.

I'd think that anybody who has any kid who is presents any kind of learning issues at all would want to familiarize themselves with the symptoms of absent, partial and complex seizures and just be aware. How many kids are misdiagnosed with ADD, especially since (don't get me started) many pediatricians and schools are ready to hand out Ritilan like candy?

In an absence seizure, epileptic activity occurs throughout the entire brain. It is a milder type of activity which causes unconsciousness without causing convulsions. After the seizure, there is no memory of it.

An absence seizure begins abruptly and without warning, consists of a period of unconsciousness with a blank stare, and ends abruptly. There is no confusion after the seizure, and the person can usually resume full activity immediately. An absence seizure may be accompanied by chewing movements, rapid breathing, or rhythmic blinking.


Absence seizures are short, usually lasting only 2-10 seconds. They are very mild, and may go unnoticed by parents and teachers. Because absence seizures may recur frequently during the day, a child who experiences them may have difficulty learning if they are not recognized and treated.

Absence seizures may be treated with acetazolamide, clonazepam, ethosuximide, lamotrigine, or valproic acid (for children prone to tonic-clonic seizures)

From what I've read, success in treatment is mixed. There's no one magic pill. Some meds work better than others, depending on the person...many children outgrow their seizures altogether. There are things to do, though, a path to take.

Andrea

edit -

Quote is from:
http://epilepsyontario.org/faqs/seizures/absence.html

All of the different seizure types are discussed here:
http://epilepsyontario.org/faqs/seizures/index.html

[magenta321]

I had another year in my childhood where I was plagued with de je vu'...I'd be flooded with an unshakeable feeling this had all happened before and then time and space would feel distorted. I remember thinking this was what Alice must have felt like when she went down the hole.

Oy! If you figure that one out, let me know. I had that -- big time -- as a kid. It was awful.

There's also another thing I can't really put a name to that happened as a kid and still happens sometimes now. I can feel something travel from my brain to my spinal cord sometimes. And it makes a noise too. It's an ooky feeling.

I don't think I have seizures (since all this stuff happened when I was a kid, and I was tested when I was 11), there's no mass in my brain, and I don't have psychosis, so I'd love to find out what these things mean.

[pluckyduck]

Originally posted by magenta321


Oy! If you figure that one out, let me know. I had that -- big time -- as a kid. It was awful.

There's also another thing I can't really put a name to that happened as a kid and still happens sometimes now. I can feel something travel from my brain to my spinal cord sometimes. And it makes a noise too. It's an ooky feeling.

I don't think I have seizures (since all this stuff happened when I was a kid, and I was tested when I was 11), there's no mass in my brain, and I don't have psychosis, so I'd love to find out what these things mean.

I am not a doctor. I am not a doctor. I knew nothing about Epilepsy until Friday morning. I am not a doctor.

Those disclaimers out of the way, .... one negative EEG doesn't rule out Epilepsy, it just means there were no seizures during the EEG.

Here's info on simple partial seizures from the UK. I like the way they explain it:

http://www.epilepsy.org.uk/info/simplfrm.html

If the seizure takes place in the temporal lobe:

If a simple seizure originates in the temporal lobe, quite a wide variety of symptoms can occur. This is because the functions of the temporal lobe are quite varied. As with all types of epilepsy, each person is different and straightforward comparisons are not always possible.

Usually, someone having a simple partial seizure originating in the temporal lobe will experience an intense feeling, for example, sudden fear or happiness. They may have an extremely vivid memory flashback or strong sense of déja vu. Unpleasant smells or tastes and an unpleasant sensation in the stomach are also possible symptoms.

If the seizure takes place in the parietal lobe:

The parietal lobe deals with our bodily sensations and simple partial seizures beginning in this part of the brain cause strange physical sensations. A tingling or warmth down one side of the body is typical. Because the parietal lobe is closely associated with the frontal lobe, people sometimes experience movement too. Known as ‘sensory seizures’ the after effect can be a period of numbness which wears off after a while.

I am not a doctor. I am not a doctor. I am not a doctor. I didn't know anything about Epilepsy until Friday morning.

(I wouldn't worry about this at all, by the way, unless you have a problem you want to solve. )



Andrea

[magenta321]

Very interesting stuff Duck. I get the visual thing too, but that's an aura that is a precursor to my migraines. And that's what we determined I have when I was 11. It's good info to know though, and very interesting. If I have more trouble in this area (as this is something that effects me infrequently) I think I would explore this further. If it ever worsens, it would be an interesting avenue to explore. Thanks for the info, for myself, as well as for all people dealing with kids.

[pluckyduck]

LOL!

Remember the part where I said my episodes in my childhood made me think of Alice in Wonderland? Carroll had Epilepsy!

Lewis Carroll, in his famous stories Alice's Adventures in Wonderland and Through the Looking-Glass, was probably writing about his own temporal lobe seizures. The very sensation initiating Alice' adventures- that of falling down a hole- is a familiar one to many people with seizures. Alice often feels that her own body (or the objects around her) is shrinking or growing before her eyes, another seizure symptom. Carroll recorded his seizures, which were followed by prolonged headaches and feeling not his usual self, in his journal.

http://www.epilepsytoronto.org/peopl...date/vol9.html

Andrea
who is getting quite an education

[kurt_messick]

Julius Caesar and Alexander the Great had epilepsy.

[rich2003dm]

Here's hoping this whole thing turns out to be a blessing in disguise for you and your family.

From all you've written about him, he sounds like a really sweet kid.

God bless,

Rich

[emeleel]

Wow, I didn't know all that stuff about epilepsy, either!

I had a friend in elementary school who probably had what would now be called the "absent" seizures, although at the time I think they were just called petit mal seizures. He would just totally zone out of everything and pretty much shut down. If I remember right, he could track a finger with his eyes, but the rest of his voluntary functions stopped working. He would have to be carried out of class sometimes, to kind of "sleep" it off on a couch in the office. (Although his eyes were wide open - no sleeping going on there!)

It sounds like find this out COULD be a good thing to me, too! If it is seizures causing the language problems, and meds can fix the seizures, you may have a whole new Dan on your hands. Optimistically speaking, of course - I realize you're far from any diagnosis or real help with this. But one can always hope!

Good luck with the appointment and getting to all the roots of this!

[pluckyduck]

Pant, pant, pant!

Well, I've spent the last 72 hours consuming every bit of everything I can find online about Epilepsy. (No, I'm not obsessive. )

I'm now the official EA R.E.E. (Resident Epilepsy Expert)

Wow. What I didn't know would fill Rhode Island, possibly Delaware. Coincidentally, what medical science doesn't know about seizures, causes and treatment would fill Texas, possibly Alaska.

It's all trial and error. A good doctor who specializes in epilepsy seems to be key. I was trying to get Dan in with a South Jersey neuro a friend recommended, but, I think I'm going to get him into the Epilepsy Center at either St Christophers or Children's Hospital. Very, very lucky to live in the Philly area with some of the best hospitals in the country....

I'm clueless, as I suspect the doctors will be, to know how much of what goes on with Dan might be related to the seizures and how much is independent issues. The only way to find out is to start playing with meds (after an EEG and MRI).

Might take a few EEGs. My tolerance for doctors proding and poking and hemming and hawing is minimal....this could be a long road.

BTW, found another seizure issue from my past. In my early teens, I had this annoying spot that would appear in my peripheral vision. Drove me nuts...lasted well over a year. It would come and hang out with me for 20 minutes or so before it left. Turns out that's a seizure (or possibly pre-seizure) symptom of a simple partial seizure that is affecting the visual part of your brain.

I can't help but think I'll be signing up for an EEG myself. I have a panic disorder, and I have to wonder if I really do have a panic disorder, or if it is all connected to this somehow.

Wow. Heavy dude. (Watched Back to the Future with the kids last night...Michael J Fox said "heavy" alot. )

Andrea

[nicholmere]

Wow.

I was not aware of the different types of epilepsy. Fascinating.

I do hope this provides some answers and treatment (?!) for Dan.

[cristina1]

Oh, Andrea! This is truly amazing information! I will be praying that this comes as a major breakthrough for Dan (and you, too.)

[frazzledspice]

My brother has taken seizure medication for many years. The downside of seizure medication is that eventually it will affect your internal organs. His liver doesn't process sodium very well anymore, and the low sodium levels can make him even more susceptible to seizures. Because of this (after a five day hospitalization) they reduced his seizure meds and gave him a medication to help him retain and process sodium.

I have two friends who take seizure medication. I do know that if a woman takes Tegretol she can't breastfeed. Other than that, they have led normal, active lives.

My brother, on the other hand, also has MS (his seizures began when his first MS attack occurred in an area of the brain that controlled seizure activity.) He is doing very well for someone who has had MS and seizures for many years--he's still working, still walking (with difficulty), still driving. He has a wonderful attitude and is a great inspiration to all of us.

Sometimes if a person takes medication for two illnesses or neurological problems the medications interact badly with one another.

My good friend in NY's son (now 27) had epilepsy and Tourette's Syndrome. The doctors said that it was impossible to use medications for both at the same time--they chose to treat the epilepsy. The boy had trouble holding down jobs and occasionally got hauled into jail for being disruptive (when they learned of his disability, they always released him without arresting him.)

He now does pretty well--works F/T, completed community college, has a girlfriend, owns a small home. But she had many heartaches when she was raising him, because the Tourette's couldn't be treated, and his behavior created so many problems.

[theeye]

Andrea, this is actually wonderful news, I think. Because now that you know what's going on, you can treat it effectively. As I know you will. All the best to you and the whole family, Duckie; you're all going to be fine.