Medical Forum / Diseases and Disorders / Epilepsy / September 2005
Symptoms and Seizures
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Skookum - 04 Sep 2005 00:39 GMT Last year at school my 10 year old daughter's teacher mentioned to me that she had occasional lapses, times when she justy didn't seem to "be there". In fact, I had thought something the same but did not really klnow what to make of it and where I live doctors are scarce and tend to focus only on big problems, not what they write off as mere daydreaming.
A week ago for the first time, my daughter had a spell of about 10 minutes where she felt numbness in her right cheek, right arm and had her words both slurring and mixing up (i.e. the wrong word coming out). She was very aware of this and even mildly amused (though frightened) by the mistaken words.
Now she is going to have a full neuro examiniation but that is a few weeks away and in my reading on the Internet I came across some information about absence or petit mal seizures as well as other materials on simple partial seizures that involve localized numbness. I was wondering if folks on this group who have had experience with pediatric epilepsy have noted a combination of such distinct types of seizures. I am not clear whether one would expect different kinds of events or not.
Thanks
G.Ross - 04 Sep 2005 01:39 GMT I did a post about 2? weeks ago where I listed some websites I'd found along my travels. One of them is Howdy Dave's site, if you have some of his posts. He's the only one currently 'from my list' who's active this week. If you'd like, you can either reply here or direct to me, and I can locate the older post and forward it Direct to you, or look it up for you and re-post it here, if you'd rather. They include some websites and 'first aid links' etc. that are handy to have in a folder, or on a bookmark for reference (that's why I don't have them with me here at the moment).
From my recall of the seizure types and symptoms on some of those sites, the 3 names of the seizure type you've used below, at **s (absence, petit mal, and simple partial) are all similar or the same seizure, but with names used by various practices or medical and treating people. Several of us have had absences, where 'the lights are on but there's no one home', and those can happen within more than just the seizure types above (mine do). Mine, I used to temporarily tune out, and only when someone asked if I was listening or alright, did I 'come back', and I couldn't recall what they had said for a period of time. Only about 20-30% of the time did I have any type of Numbness, but 100% of my times, I lost awareness of where I was, what I was doing, and many of the times, I was potentially in danger or completely lost consciousness. (Complex Partial type, I have, often end in loss of consciousness at end, until they're controlled.)
For safety, it's probably wise to get those checked, as you plan, since if they got worse there could be side effects she might not like. (Some of mine included disorientation while crossing a busy street, losing awareness in Shopping Malls and wandering off unaware of Traffic or objects in my way, or getting onto buses I didn't need. Not all those need happen with that type of seizure, but some could unless it's treated, or diagnosed. And depending on her Peer Group, she may not want that to start happening, if they can be controlled after the Doctor has done some diagnosis work. ) If it's happening with a fair consistency, it will often show up on an EEG (Electro-encephalogram) test, where they wire up parts on the outside of the head, then flash lights, trigger sounds and other stimulii, that produce waves on paper for the Dr. to interpret. Mine were very obvious (I even knew as the technician was circling places on the paper as the test was running). *Some people here have had EEGs that didn't show their seizure type as easily or the first time they had it run. But I think it's *worth running the test if your Doctor agrees. As I suggested above, if she's having absences when there may be no one around who knows that, there could be some safety issues that I'd be happier if you were able to get those treated. Some people might have those as result of some types of allergies, but most of us have either some type of Brain Wave irregularity or condition that can be treated with medication, but *after it's identified by tests like above. It's good that her Teacher noticed those and let you know, since they are with our kids some days longer than we might be, so in a better position to notice things like that. Others here will voice their opinions over next day or two --we're an International Group and get posts from about 8 of the main timezones, but we're not all online at the same time. And some of the posters may not read the group each day (this is a Holiday weekend in Canada for one).
Please, keep us posted about what's going on and how you make out with the Doctors. And if you have more questions before the Dr. appointment or after it, add them to the posts too. All of us around here started out as First Time posters and stayed on. Well, except for Howdy Dave who's olde and wisened.. I don't know when he started--he said something once about some guy named Galileo... G./
> Last year at school my 10 year old daughter's teacher mentioned to me > that she had occasional lapses, times when she justy didn't seem to "be [quoted text clipped - 19 lines] > > Thanks G.Ross - 04 Sep 2005 04:05 GMT > I did a post about 2? weeks ago where I listed some websites I'd found > along my travels. One of them is Howdy Dave's site, if you have some of > his posts **(His site address is listed below now). This is one older post I did with some websites mentioned on this earlier site. -->
The main Idaho Epilepsy News site is at http://www.epilepsyidaho.org . Within that are links that also go through an Education area called Learn about Epilepsy -- at http://www.epilepsyidaho.org/learn.htm.
Often some *symptoms people **exhibit give clues to *type of seizures they're having and best described on a First Aid for Seizures Chart. These are my favorites -- also from Epilepsy Idaho. One is http://www.epilepsyidaho.org/seizure2.htm and that links to http://www.epilepsyidaho.org/seizure.htm . One of those is easier to print, although both display well for information or reference.
There is also a separate page for First Aid in Water I didn't include, although those sites might link to it. What to do when someone in swimming is somewhat different that if they were to collapse 'on land'.
Howdy Dave has a site he put together ~10? years ago and he regularly updates. He was also one of the oldest :-< members of this group and someone told me he was one of the Founders too. Most people don't know that, so he doesn't get a swelled head or anything.. :-> His site is at http://www.howdydave.com . G2R2/
> I have a few sites I used to post but they're not handy at the moment > and I'll be offline shortly. The main U.S. Ep. Foundation website is at > http://efa.org . THIS SITE Has a Medication Glossary, although I found > my own pharmacist a useful source of information if I had Side Effects or > Questions about using a particular prescribed pill. // G./
Dave ©¿©¬ - 04 Sep 2005 17:05 GMT Howdy Skookum!
My epilepsy went undiagnosed for quite a few years.
Looking back, I have a clear indication of when it started. There were comments on my report card stating that I "Daydreamed during class."
I vigorously denied these statements and it was a mystery to me until I knew about my epilepsy.
 Signature Dave ©¿© "Ego sum quis Ego sum quod ut est quicumque Ego sum"
http://www.howdydave.com
> Last year at school my 10 year old daughter's teacher mentioned to me > that she had occasional lapses, times when she justy didn't seem to "be [quoted text clipped - 19 lines] > > Thanks Julie - 06 Sep 2005 07:35 GMT Hi Skookum, welcome to our ng. It is let your daughter know that there are many people who experience seizure disorders and it is very good that she will be seeing a specialist. Thank goodness your teacher's pointed out the problem and you listened to them.
I had full blown grand mal seizures in high school and the teachers told us to pay attention, but even though I remember my mother taking me to the local doctor, nothing was done. Of course this was in a little town in Alaska and I'm really old, so hopefully things have changed around there.
Hope your daughter gets the help she needs. Take care, Julie, Volunteer Webmaster http://www.epilepsyidaho.org
> Last year at school my 10 year old daughter's teacher mentioned to me > that she had occasional lapses, times when she justy didn't seem to "be [quoted text clipped - 19 lines] > > Thanks Sofia - 08 Sep 2005 22:33 GMT > A week ago for the first time, my daughter had a spell of about 10 > minutes where she felt numbness in her right cheek, right arm and had > her words both slurring and mixing up (i.e. the wrong word coming out). > She was very aware of this and even mildly amused (though frightened) > by the mistaken words. It can be very frightening for children can't it, but as you seem to have reminded me, my mother always seemed to have been much more frightened about it than I ever was. Even today it's hubby that seems to worry about me all day, while like your daughter, I'm just mildly amused by it all.
Back to Kris's original question about keppra side-effects though, I don't particularly think this problem is unique to the drug keppra, as they seem to affect quite a lot of us whatever drug we're prescribed.
Ever since the mid 70's, when I was at school, I seemed to have been getting these twitches that Kris seems to get, and the worst part of it is that they always seem to move at their own volition. They have a mind of their own, and always seem to pounce at the wrong time.
These side-effects have probably been experience by many others on the newsgroup other than just ourselves, so I certainly sympathise with you and all the others, who have gotten into trouble in the past for thumping or kicking strangers who haven't got a clue about your condition. I have to say though that the most embarrassing twitch for me has to be the eye twitch, as winking at boys on the bus to and from school was always a problem for me. Nowadays I end up winking at people in Sainsbury's whilst I'm pushing my trolley around at no fault of my own, but if I didn't have hubby with me to explain why I was winking at somebody's partner, I probably wouldn't even be here today.
My best advice to Kris is to always make sure she has somebody with her at all times. Whether it's a relative, friend, partner doesn't matter, just so long as they know about your condition, and can defend you if you get into any little misunderstandings.
All the best
Sofie
 Signature Please visit my deviantART page: http://sofen.deviantart.com/
Skookum - 22 Sep 2005 18:11 GMT "Skookum" here again with an update. My daughter had an EEG (she was supposed to be also scheduled for a CAT scan but it turns out our family doctor forgot to fill out the required forms and so we waited and waited...etc). Here's what it said verbatim by the "neuro consultant" (an MD) :
________________ Technical Summary:
The awake resting portion of the recording shows a well regulated 40-50 microvolt 10 cycles per alpha rhythm. Low amplitude beta activity was the dominant frequency in the anterior leads.
In the awake state there are frequent brief bursts of up to 1 or 1.5 seconds assessed spike activity in occipital derivations. This is bilateral but a little bit more on the right side.
Photic Stimulation:
Symmetrical recruitment between hemispheres.
Hyperventilation:
The occipital fast spikes were quite a bit more prominent during over breathing and there were two slight bursts of episodic and frontal dominat spike and poly-spike and 3 cycles per second slow wave activity. One lasted one second and other two seconds.
Impression:
This is an abnormal EEG. Brief runs of spike activity is(sic) recorded in occipital derivations and generalized spike slow wave activity is present during hyperventilation. The finidngs would be consistent with a diagnosis of generalized epilepsy. ________________________
Our daughter says she has had no further episodes to her knowledge other than that previously described 10 minute period of tingling in arm, face and speech slurring. We have to have the foolishly forgotten-about CAT first to eliminate non-epilepsy possibilities but assuming that comes back consistent with an epilepsy diagnosis, we'll start looking here and further afield for a good place where some comprehensive knowledge of pediatric epilepsy exists. Given that he major apaprent symptom to date has been those absence seizures her teacher her noticed, I am especially interested in therapies that not so much eliminate these but help the kid to adjust so that her learning does not suffer.
Regards.
G.Ross - 24 Sep 2005 20:43 GMT > "Skookum" here again with an update. My daughter had an EEG (she was > supposed to be also scheduled for a CAT scan but it turns out our [quoted text clipped - 17 lines] > and put them into a form you can understand without needing a medical > licence. She is having short spikes of electric activity in an area of her brain called the 'occipital lobe'. If you want to read up on what that controls and how damage or misfiring might affect that area, while you wait for them to complete their tests, you could search on that area just to see the sorts of things they control -- (I think there are *2 occipital lobes? If there are, you'll later need to know if it's one or both, and *Which one, if it's only one. You *might be able to tell by reading the symptoms of either side in the literature or at efa. Treatments and symptoms can vary depending which side a spike was occurring on. ) Various areas of our brain control various functions and abilities, and either damage or deficit in a particular area can produce different symptoms that, so far, *you've done a better job of analyzing than the Medical help you have. Any therapies or things you or the school could do to help, would depend on whether any damage was minor or more severe, and the extent to which it could get worse as she matures. *Some kids these things just clear up while the med. staff search for solutions. Not always, but enough that it is something encouraging to hope for. Alternatively there might be a milder (than adult) medication that might help her suppress those 'spikes' it mentions, and that might be enough to help with her learning and schoolwork until she is older and either outgrows the condition or moves to an adult dose medication. (As she had spikes during the test, it could be possible she also has them at night, so could be getting less rest than if they were controlled.)
(I recognize the name [occipital lobe], but am not familiar with the Area and what it controls, or I'd have given it here when you first posted. Perhaps some of the others around *now, who have **Occipital Lobe-based seizures, can tell us about them and GIVE US A Name for the seizure type, or some www addresses....
The 'Generalized Epilepsy' stuff above is junk. There are about *5 main seizure types and they haven't used Any of the standard *names you could do a search on, unless you just want to use Generalized. There are Simple Partial, Complex Partial (mine-> usually end in loss of consciousness), Grand Mal, or Petit Mal seizure types. Younger kids can have 'myoclonic' or one other type, depending on age. I'm not a Doctor. But usually, when they refer to a seizure 'generalizing' (you might encounter yet) it means electrical waves spread across the rest of the brain, and can result in loss of consciousness, and possibly kidney control.
** Generalized Seizures do not exist on the Ep. Foundation Charts? (I think) It's like saying your car has a loose strut somewhere, without completing the diagnosis of exactly what the H** is wrong with it and what's causing it.... There's not enough information on that report to do anything with. Hopefully the 2nd test will give something useful. My opinion (non-medical)-- the only useful info. we have so far is about the Doctor/ staff ordering the tests.
The advantage of having these is if you also get the Other Test results, including the one he 'forgot to do' ?? you could carry them to a Doctor who might be able to analyze them if you decided to.. *I wouldn't let this Dr. do any kind of surgery or work that requires *attention... Just my opinion. ********* In the meantime, wrt. seizure types, you could look at http://efa.org under Absence Seizures, possibly Petit Mal and Simple Partial to see if any of the symptoms fit into what she already had experienced. Although some types of seizures can be outgrown, it would be to her advantage to start without assuming that, and looking under those descriptions for information. If she is Prescribed anything, the efa site has a Medications Glossary you could look at for additional information beyond what your pharmacy provides with the first prescription. (If they don't provide information on what to avoid or use with it, *ask them for the Manufacturer's Website so you can get that information for yourself to print. ) /
> Our daughter says she has had no further episodes to her knowledge > other than that previously described 10 minute period of tingling in > arm, face and speech slurring. *** That could be the case. The trouble with an Absence (I've had) is she can be 'away' for periods of seconds to minutes, and unless she's doing something that required attention -- riding a bike or skateboard -- she might not be aware she *had them. That's why it was *good that the Teacher noticed those and let you know about them. If you can see any posts still up from Julie, at the end she usually includes the www of the Idaho website -- there are 2 excellent First Aid charts there (land and water), that also help identifying the szr. type based on behaviours the patient exhibits. The main site (and likely 1st Aid) should be on bookmarks for easy reference too. You can look through the whole site when you have time, as there's a lot of useful information there, that will save you having to learn this stuff from scratch and might help with questions for a doctor as you supervise her treatment to a successful control and outcome. Keep us posted, as some people only read the group 2-3x a week, and may not respond for a few days after your original posting went up. /
We have to have the foolishly
> forgotten-about CAT first to eliminate non-epilepsy possibilities but > assuming that comes back consistent with an epilepsy diagnosis, we'll > start looking here and further afield for a good place where some > comprehensive knowledge of pediatric epilepsy exists. **** The Computer Assisted Tomography is a 3D Heat senser, that then produces a 3D map of what's inside. It's often more accurate (down to millimetres) if there was any damage or blood blockages than an EEG, which detects Electric waves and spikes (above), but doesn't always show where it's *from. It's from an Occipital Lobe but that didn't tell us much so far... What we want is to know if there's any lump, blood blockage or what? that might be interfering with its operation. Possibly there's a small glitch that predates her being born or when she was really young, that the Dr. can treat either with therapies or medications. (We use Occupational Therapists for the former in Canada, who help school kids/adults develop workarounds if they had learning problems, or to catch up to where other kids might be, then she could carry on with the rest of the class from there.) /G.
Given that he
> major apaprent symptom to date has been those absence seizures her > teacher her noticed, I am especially interested in therapies that not > so much eliminate these but help the kid to adjust so that her learning > does not suffer. > > Regards. G.Ross - 24 Sep 2005 23:35 GMT I posted this list of websites about 3 weeks ago. You probably hadn't registered here then. Here it is again. --> "G.Ross" <> wrote in message news:aeadnVOOPufE34feRVn-vw@rogers.com...
> I did a post about 2? weeks ago where I listed some websites I'd found > along my travels. One of them is Howdy Dave's site, if you have some of > his posts **(His site address is listed below now). This is one older post I did with some websites mentioned on this earlier site. -->
The main Idaho Epilepsy News site is at http://www.epilepsyidaho.org . Within that are links that also go through an Education area called Learn about Epilepsy -- at http://www.epilepsyidaho.org/learn.htm.
Often some *symptoms people **exhibit give clues to *type of seizures they're having and best described on a First Aid for Seizures Chart. These are my favorites -- also from Epilepsy Idaho. One is http://www.epilepsyidaho.org/seizure2.htm and that links to http://www.epilepsyidaho.org/seizure.htm . One of those is easier to print, although both display well for information or reference.
There is also a separate page for First Aid in Water I didn't include, although those sites might link to it. What to do when someone in swimming is somewhat different that if they were to collapse 'on land'.
Howdy Dave has a site he put together ~10? years ago and he regularly updates. He was also one of the oldest :-< members of this group and someone told me he was one of the Founders too. Most people don't know that, so he doesn't get a swelled head or anything.. :-> His site is at http://www.howdydave.com . G2R2/
> I have a few sites I used to post but they're not handy at the moment > and I'll be offline shortly. The main U.S. Ep. Foundation website is at > http://efa.org . THIS SITE Has a Medication Glossary, although I found > my own pharmacist a useful source of information if I had Side Effects or > Questions about using a particular prescribed pill. // G./
>> "Skookum" here again with an update. My daughter had an EEG (she was >> supposed to be also scheduled for a CAT scan but it turns out our [quoted text clipped - 9 lines] >> does not suffer. >> Regards. Dave ©¿©¬ - 25 Sep 2005 04:17 GMT > "Skookum" here again with an update. <snip>
> Given that he > major apaprent symptom to date has been those absence seizures her [quoted text clipped - 3 lines] > > Regards. Howdy!
That's a toughie...
The problem is:
How do you get someone to adjust to something that they don't even know is happening in the firstplace?
The only evidence we had (in my case) of absance seizures was the fact that I got some "Daydreams during class." Comments on my report card.
I fiercely denied the accusation... I never even knew that I had missed a chunk of the lesson.
Unless somebody is specifically looking for absance seizures they will probably either be missed altogether, or misinterprited as daydreaming or something else.
 Signature Dave ©¿© "Ego sum quis Ego sum quod ut est quicumque Ego sum"
http://www.howdydave.com
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