seizure disorder

[LMReggcellent]

Speaking of the 'epileptic' thread...

At our recent association board meeting I learned that UT law is very close to turning the words 'seizure disorder' into 'epilepsy' (unless it's a different diagnosis), which will help with insurance benefits, financial help, statistics and stuff like that. So who here would rather have epilepsy than a seizure disorder? Personally, I'm very happy about this change.

 

[arnie]

The term epilepsy is just fine with me. As I said in the other thread I really don't like "epileptic". Too many negative connotations, especially for those of us who are a little older. I'm not sure if there is a true diagnostic difference between "seizure disorder" and "epilepsy", but if having epilepsy is the term that doctors and hospitals and insurance companies can use to code it for best coverage, that's fine with me. Epilepsy is confusing enough without having ambiguous terminology thrown into the mix. As I think I said in the other thread. I would never say "I am epileptic" but I have no problem saying I have epilepsy. It might be more accurate to say that epilepsy has me, but there are only certain times when I feel that way. I'm sure most of you can relate!

 

[Cint]

IMO, a seizure disorder and epilepsy are one in the same. As Kirsten said in the other post, it is just a matter of semantics. I've always told others that I have epilepsy.
It is what it is.

~ -: Prefix taken from the Greek that means "on, upon, at, by, near, over, on top of, toward, against, among." (I am not saying epi, but the prefix of this word, it just comes out this way when I type it.)

~lepsy
a combining form meaning “seizure,” used in the formation of compound words: epilepsy.

 

[LMReggcellent]

I meant to say a different diagnosis of a form of epilepsy, such as Dravet syndrome or Aicardi syndrome.

*edit: so the others would not be called 'seizure disorder', either.

 

[Belinda5000]

I know a seizure disorder and epilepsy are the same thing.I just don't care for the word epileptic.When a lot of people use the word epileptic I prefer seizure disorder.
If someone says I have epilepsy that's fine with me also.I've had epilepsy 50 yrs and I've seen a lot of changes over the years.I could've been put in a mental hospital by my parents in the 60's.There were only 6 drugs out when I was a kid.

 

[kirsten]

In SA, they already use the term 'epilepsy' and since it's a prescribed minimum benefits condition (in other words, one that medical insurance absolutely has to cover) it's useful. Medical insurers use technicalities and differential coding as excuses not to pay.

Let me paraphrase a recent conversation with my insurer:

Me: Does my medical aid cover VNS surgery?
Medical Aid: There are several codes for that procedure. We pay for some codes but not others.
Me: So what's the right code?
Medical Aid: We can't tell you that. Your doctor will have to make the right guess.

 

[chmmr]

I personally prefer the term seizure disorder when it comes to my daughter That's what i had printed on her medic alert bracelet too. Now truth be told i do prefer the term seizure disorder to epilepsy (not sure why, just a gut reaction i guess, much like how Belinda described her not liking the term "epileptic' i feel much the same) However that said i think i also prefer the term because to me it encompasses a wider range in the public perception and allows me to explain about the different seizure types (my daughter is 4 and has complex partials). For the people we have crossed paths with and had to discuss it with, we have found that "epilepsy" for the general public only covers a person dropping to the ground and having a tonic clonic and no matter how many times i explain it people seem to hold on to that image. Seizure disorder seems to me to imply a wider array and therefore they seem to understand a bit better. Or maybe everyone i meet is just weird.......

 

[kirsten]

Nah, your people aren't weird. I no longer bother to try to explain that there are different kinds of seizures.

As far as terms are concerned, it's one thing to choose the terms we prefer in our social interactions and quite another to get the medical profession to come to an agreement about codes. The more complicated their codes are, the more loopholes there are for insurers to use to decline coverage. Also, if our pharmacists, GPS, specialists and insurers are all using the same word and code, there will be far less confusion. For example, with my country using epilepsy when referring to...er...epilepsy, when I go to the dentist, the pharmacy, the GP or the neuro, everyone is on the same page. They access my records via tablet, and they all know what my diagnosis is off hand. I don't have to answer questions and I'm not at risk of having anyone confused about the cause of my seizures.

 

[chmmr]

I think the "code" thing may be more exclusive and applicable to the US as here in Canada we don't have insurers to worry about turning down payments etc. Epilepsy, seizure disorder etc have all been used interchangably on medical reports depending on the doc because it doesn't matter. I know after she had a couple of seizures, we were in the hospital for something else and a ped i have never seen before came in and said "oh your daughter has epilepsy?" Well my head spun around on my shoulders and i said no and he looked confused and clairified that she had in fact had a couple of seizures and moved on. It wasn't until after when i looked it up and realized that the "definition" of epilepsy is two or more unprovoked seizures that i realized he was right and probably thought i was nuts lol. But no one had used the term with us to that point so i had no clue and just the idea of the word epilepsy at that point struck fear in me i guess.

 

[kirsten]

Well, that's pretty shocking. No wonder you were scared. He should have stopped and spoken to you properly, explained all the ins and outs. Just plain 'epilepsy' is scary enough as it is. The first time I was told I had epilepsy I was terrified, too, but at least my doctor took care of me on several levels and made me feel as comfortable as was possible emotionally speaking.

 

[marika853]

I agree with some of the others here. When I was first diagnosed with EPILEPSY I was freaked out because I also only knew of the falling down, convulsing, foaming at the mouth, type. It was later that I realized that having 2 or more seizures makes it Epilepsy. I would rather call it "seizure disorder" Maybe it's a generational thing. I'm 60.
M

 

[chmmr]

Well, that's pretty shocking. No wonder you were scared. He should have stopped and spoken to you properly, explained all the ins and outs. Just plain 'epilepsy' is scary enough as it is. The first time I was told I had epilepsy I was terrified, too, but at least my doctor took care of me on several levels and made me feel as comfortable as was possible emotionally speaking.

He didn't mean anything by it-to him she had 2 seizures so she had E. To me, i was still trying to figure out why my 4 month old had a couple of seizures (she had had a number of tests that were all normal except for her EEG), and he was treating her for a fever so it was more of an incidental "ok she has epilepsy" when he quickly reviewed her chart.

 

[giveasmile]

I'm 47 and also thought that "epilepsy" meant tonic clonic only, until I found this website.

I also remember when my parents used the word "epileptic" in a hushed and patronizing tone. I think older generations (they are mid 70's now) associated the word "epileptic" with children who had physical and mental challenges that also happened to have seizures.

I am fine with any/all of the words. I just wish people knew that there are all different kinds of seizures and that having them doesn't mean you automatically have other issues.

 

[Nakamova]

I am fine with any/all of the words. I just wish people knew that there are all different kinds of seizures and that having them doesn't mean you automatically have other issues.

:agree: