Grodo

I realize now that I may have come in here with a very unfair characterization of my student, but I feel like this one is even more unfair. She is not the type of person who milks her disability and/or illness for all that it is worth. I would say, on the contrary. In the two and a half years that I've known her (training is spread over three, here, for working students), she's told me a few times that her medication had been changed because it was affecting her in some way that had an impact on her functioning in class. It seems they were experimenting? I think it might very well be true that her seizures do not respond to medication as well as expected. I do know that before she came to us, she used to have more than two seizures a month, so perhaps the medication is helping a little, but not enough. In any case, when I thought she was faking, I thought she might be doing it due to some kind of psychological need (i.e., getting the nurturing and attention that she seems unable to obtain for herself any other way, seeing as she has no family nearby, and her social network appears to be thin). I never thought it was because she wants to cast herself in the sick role. She is, in many ways, more independent (and fiercely defends her right to be seen and treated as such) than many perfectly healthy people I know.

At this point, neither do I. That is pretty much exactly what the student said to me, the first time I asked her why she prefers not to have EMS involved. Sarcasm included. The truth is, in many situations it would just be easier for *us* to be able to call an ambulance and be done with it. This woman has no family nearby. She has a few emergency contacts, but there's no telling as to whether those people will be available at any given time. She's explained *that* to me, too. She can't expect anyone to stay home all the time, waiting for that one phone call that may or may not happen. Otherwise, what would be the point of her leading an independent life? She might as well have someone come with her everywhere, then. And two seizures a month is a lot, I guess, but not enough to entirely give up your independence over. I get that. That, I will not disagree with. Thank you for your suggestion. And tank you for your story!

No doubt. But I mean things like how spasticity affects movement, and that it can cause muscle and bone contractures in the long run. That is something I only discovered yesterday, after someone here had told me to go read about CP and related conditions. But I'm an educator, not a medic. And the medic who loaded my student into the ambulance on Wednesday seemed incredulous when she said she couldn't stretch her knees out all the way. He asked her three times. Now, it is perfectly possible that most doctors do know that kind of stuff. But I'll tell you, I have long QT syndrome, for which I have regular follow-up appointments with a cardiologist. When I asked that person if my husband could get an appointment with him too, seeing as our PCP thinks there might be serious arteriosclerosis, he referred us to a different person. I'm not saying he's not competent at what he does with me. He may even be perfectly competent to tackle both my and my husband's conditions, and there may be an entirely logical medical or practical reason for him not to take us both. I'm just saying that in a system where one cardiologist doesn't always fully grasp what the other is doing (or one neurologist, or one orthopedist, or ...) ... well, it may not be so hard to gather better knowledge of a specific condition, which you happen to be suffering from, than most doctors out there ... I imagine, for instance, that cerebral palsy is one of those things that requires an interdisciplinary approach not available in very many places. Given that, I'd find it unsurprising if most of the bright people with CP knew more about their own condition than your average ED doctor. The same might be true for epilepsy. Which still doesn't mean that patients can be trusted to treat themselves all on their own, of course. Just that, when they are adults and of average or above-average intelligence, they are probably an invaluable resource in making decisions about what to do, when a doctor who specializes in this stuff is not immediately available.

To be fair, I don't think she really believes this. I think it's become a running joke between her and some of her friends/confidants. It's pretty clear that she hates hospitals, and she's willing to avoid them at all costs. But when the ambulance actually showed up Wednesday, she was cordial with the people manning it, even when they at first refused to take her wheelchair with them. I do believe, however, that she knows more about herself and her own medical conditions than most first-year residents do. In line with your colleague's comment on paramedics who don't really know how to treat complex pediatric patients, it wouldn't surprise me if beginning doctors aren't nearly as well-informed about the exact effects and consequences of certain conditions as the people who are actually living with them.

I don't for a minute believe that she would ever go to court trying to blame us for the consequences of one of her seizures. if she'd been the type to do that, I'm sure she would have found a reason and a victim already. That said, I don't know her parents or brother or sister. If it went really, really wrong, they might pull the trigger on legal action. I will look into your suggestion of having an MD put down some bright-line rules for when we do and do not call EMS.

@ixchel: I believe, going by my newly gained knowledge of different types of seizure activity, that your description of walking into an ER while having an active seizure, means your seizures are (sometimes?) simple partials. My student has generalized seizure activity (tonic-clonic attacks): something I had seen before in my grandson. That previous experience predisposed me towards expecting the same thing in someone else. This student's seizures seem different, though, not so much during, but definitely after. As I've said before, that threw me off. I can see now, though, that as you say, it is not my place to judge. Moreover, I've had responses here from people who have experience with clients who have both CP and epilepsy, making me see that the two conditions can influence each other and create something "weird", which even the EMT may never have seen before. I no longer think this person is faking her seizures. But to be honest, that doesn't put my mind at ease. It makes me more scared for her than I've ever been. My apologies to you, Ixchel, if my initial post, and maybe some of the ones after, have offended you.

Oh, no. She is without question one of the brightest people I've ever met. She joked once that she probably knows more about medicine than many first-year residents do. I believe her. She basically never takes notes in class (apparently writing is slow, and painful in the long run), but she remembers everything. We are night school (teacher education), but she went to university too. I believe she even has two degrees. She currently works as a computer programmer. I just wonder how she's ever going to be a teacher, if all these seizures are real ...

I *have* asked the student why she doesn't want EMS involved. Basically, her story is that every time someone calls an ambulance, it means a doctor in the ED (she calls them student-sorcerers) will tell her that (a) they can't do anything about this right now, and (b) she should go see her neurologist ASAP. And then, she has to wait two-three hours for someone to get around to discharging her. That's unless the "student-sorcerer" in question is particularly inexperienced, in which case he'll want to cover his behind by admitting her. She has also told me that every time an ambulance is called, it costs her more than a day's wages. And so her rule of thumb is: do not call an ambulance unless it's obvious that I am severely hurt, my seizure has lasted longer than five minutes, or I've had multiples on the same day, while you were watching. The question, for me, remains. You are all now saying that this situation is too complex for a non-medical person to adequately judge. Does that mean I go against her wishes every time? Does it mean I call an ambulance no matter what? Or is the rule of thumb that she has given me a solid one? And if it is, then how do I know what "severely hurt" means? Once, after she'd had one of her seizures at our school, she was home for two weeks because she had aggravated her ruptured spinal disk and couldn't walk on crutches, nor push the wheelchair by herself. She told me that her back had gotten worse, but not how it had happened. Thinking back, though, I remembered how she'd held her breath while we put her back in her chair that last day at school, and how she couldn't pick up her backpack when she was ready to go home, because she couldn't bend that far (something she otherwise has not trouble with). If I'd asked her, then, whether she needed to go to the hospital, I'm pretty sure she would have said no. But she's the type to tough it out in silence; not scream bloody murder for a hangnail, like some other people I've had in my class over the years. In the end, even when she's awake and alert, it seems difficult to know when to pull the alarm, in her case. So I'm left asking you guys: do you think her "rule of thumb" for when to involve EMS is a good one? Should I follow it, in the name of respecting her wishes? Or should I just call 911 every time, like some people have already suggested?

We do have one. It states, literally: "Emergency Medical Services should be contacted in all situations that are deemed, by any member of the staff, to be a genuine emergency." That still leaves me trying to assess what a genuine emergency is, in the case of a student with known epilepsy and various other medical issues.

Well, if I should respect her wishes *not* to be confronted with EMS in most cases, then I would like to know when I *do* call EMS. If I ask the student, she'll give me some variation on "when I'm dead, running on half my normal blood supply, or blue in the face from not breathing." To be fair, she did once tell me that medical intervention is warranted when a seizure lasts longer than five minutes -- a piece of wisdom I have found on various "how to deal with epilepsy" videos, too. But according to her, she's never had a seizure that lasted longer than five minutes, and I've never witnessed her having one that lasted that long, either. So what, then? Should I be concerned when her post-ictal period lasts longer than normal, too? If so, how much longer? I also read that EMS should be called when a person has multiple consecutive tonic-clonic seizures without waking up in-between. I suppose that means being post-ictal, and then going straight into another seizure. No jokes about us being too fussy, in-between. OK, I can do that. But what about when she does wake up in-between, but still has multiple seizures within, say, the span of one hour? Is that cause for concern, too? Based on what I've read so far, it doesn't actually happen that often. Does that mean these seizures might be psychogenic, after all? And can the ED do anything about psychogenic seizures, or do I just give her what she seems to crave (i.e., attention)? Gosh, I have so many questions now.

I appreciate the comments from people who have experience with clients who have both CP and epilepsy. I am just a teacher, not a medical professional. But knowing these things puts what I've seen in perspective. I consulted the Wikipedia page on cerebral palsy, and after reading that, I remembered that my student once told me she has spastic diplegia. So if elevated muscle tone is a normal post-ictal thing for someone with spasticity, I suppose that's another "weird" element I can discard as potentially indicating a fake seizure disorder. The thing is, the EMT who picked her up Wednesday also said it was weird. But I suppose, as per JustBeachy's comment, that not all EMT's know how epilepsy affects spasticity, and vice versa.

@dishes: That could be true. But her elevated muscle tone gets much, much worse after she's had a seizure. Under normal circumstances, she has almost no impairment in her upper limbs. Not that I notice, anyway. And she herself has said that most of the time, she's able to use her hands and arms normally. She can do things like write in longhand for an hour, if she needs to. But after she's had a seizure, suddenly she's no longer even able to pick up her own coffee mug. That just seems ... well, weird, to me.

Hi enuf, Actually, the person I am talking about is an adult, and she seems to have no family. Of course everyone has family, but you know what I mean: estranged from her parents, no partner, no children, and even her brother and sister live far away and aren't consistently in the picture. That's one of the things that made me suspect attention-seeking behavior in the first place. It does not seem like she has a great support system in place. She needs to be getting the love from somewhere, right? We are as good a source as any. After doing some more due diligence (I admit that my first search was mostly limited to fake seizures, but now I've been looking at real ones too), I know that the spectrum of seizure disorders is pretty wide, and it includes many types of "strange behavior" that I wouldn't have seen as any kind of seizure before I posted this topic here. This particular student told me her seizures are tonic-clonic epilepsy, though. And because my grandson has the same type of seizures, I expected the same, or at least a similar presentation. Her quick mental recovery, coupled with protracted physical impairment (trembling, stiff limbs) threw me off. I suppose you were trying to say that what I'm seeing in this person could very well be legitimate epilepsy? If so, thank you for letting me know. It has changed my outlook, and I'm sure it will change the way I handle the next seizure I witness, even if only subconsciously.

I imagine, then, that anyone can also say they are having a "pseudo-seizure" instead of faking it. Mind you, after hearing all of your opinions, I no longer think that this student is faking it. I'm just saying, "pseudo-seizure" seems like a cop-out to me. Thing is, the person herself has told me, and colleagues at the school, that not a lot can be done about her seizures. I've only seen five, including the one on Wednesday. But all of them have lasted under a minute, followed by ten to fifteen minutes of unresponsiveness, and then she's back. She's been incontinent for urine exactly once, and has never bitten her tongue in my presence. Speaking seems tiring for her when she's first coming out of a seizure, but she's invariably making jokes and telling us we're being way too fussy within twenty minutes of having had a seizure. It looks pretty strange to me, but I guess it's possible even for a true epileptic ... In any case, if she's faking, she's probably not doing it for the Ativan. On Wednesday, I heard her refuse to let the EMT's hook up an actual IV to the needle they put in her arm, "because I know you'll want access, but I'd like to avoid all medication that's not strictly necessary." What's even stranger is that fifteen minutes after a seizure, she can usually talk, but not do much of anything else. She has heightened muscle tone and, like I said, has a tendency to shiver after a seizure, which I had never seen or heard of before this girl (well, at 28 I suppose she's not really a girl anymore, but you get the picture). But then again, I'm not a medical professional, which is part of the reason I came here with this story. I suppose, as I'm finding out, anything goes with seizures.

@blondy: No. As per privacy law, we can only ask about medical history before taking people on an overnight trip, which happens sometimes in compulsory education, but never (or almost never) with us. And even then, we are obligated to discard the forms as soon as the trip is over. There's a separate entity that does regular (bi-annual) medical check-ups on schoolchildren. They will inform the school if there's something they really need to know. But that does not apply to adult education, either. Also, there's no guarantee of accuracy, unless the form has been filled out by a GP or something. When I was a scout leader, I once had a thirteen-year-old at summer camp who had filled out her medical history form herself, then had it signed by her parents, and finally added some more stuff that her parents never saw. It's how she made us believe she was deathly allergic to a long list of foods that she just didn't like. But OK. Medical professionals have told me she could in fact be suffering from all these things at once. I will act upon her seizures accordingly. Thank you all.