Medical Forum / Diseases and Disorders / Epilepsy / September 2003
Advice please.
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Steve Thomas - 10 Sep 2003 08:56 GMT Hi, I'm looking for a bit of advice please on behalf of my 22 yr old daughter. Ever since she was a young girl, (we first noticed when she was around 8 or 9 I think), she has be suffering from what appear to be extremely mild seizures. They ONLY happen when she is asleep/falling asleep, and last for only a minute or two. Over the years they have been quite infrequent...as far as we can tell, mainly fewer than once a year. On the occasions when we have been able to 'catch' her in one of these (we were called by our other kids), I have held her in my arms and the only symptoms seem to be a slight mumbling/flickering of her lips, whilst her eyes were still open. Although she seemed unable to see anything or hear either. Nevertheless immediately afterwards she would begin to respond to her surroundings in a garbled/confused way, and would react to communication by becoming upset and sometimes crying. For all of the following day, she would be very tired and confused and would experience difficulty in concentrating. On every occasion, she has been totally unable to recall the incidents by the following morning, although she is able to recognise the fact that she is tired/confused. Our family GP, and several neurologists/specialists have been unable to exactly pinpoint what it is, a scan showed no abnormality and in fact her last specialist discharged her a few months ago (I suggested she went to see him in case anything should happen while she was taking her final exams in university, so that she would have professional backup should she need to explain to the uni). Her specialist also said that due to the infrequent occurrence of the seizures, he himself would probable opt for not taking drugs. When I called round to visit her a couple of months ago, she came to the door, and I immediately knew by her demeanor that she must have had one the night before. When I asked her, she replied that she thought she felt a bit funny and started sobbing. By the following day she was as right as rain again. Normally, she would not expect to have another for at least several months, even years. However two nights ago and for the first time EVER, she actually remembers one taking place, she even fell out of bed for the first time! As a result we are all wondering if the fact that she is becoming more aware of the situation means that they are becoming even milder, or the fact that two happened so close together means that they are getting more severe? We would very much appreciate hearing from anyone who has had similar experiences, or any general advice regarding what might cause/bring them on. We have both been looking at dozens of sites on the internet, but you simply can't beat talking directly to someone who knows! Thanks very much for reading this, and thank you for any help you may offer.
Cheers, Steve.
 Signature Regards, Steve Thomas
Kim Haines - 10 Sep 2003 17:19 GMT I've been meaning to ask somebody about this for a while now, but I forget until it happens again. Sometimes when my son wakes up (he's almost 4), he has what seems to be a type of seizure. His hand or arm is trembling, his eyes are wide open and still, and he makes strange noises. Then it stops, and he becomes very upset and starts crying and sometimes pees the bed. Then he cries and cries. I used to think it was just a bad dream, but I've had a strange feeling about it since the last couple times it's happened. It only happens every few months, and hasn't happened for about 4 months.
It sounds similar to your daughter's experience in a way. I'm curious to hear what other people think about it.
Kim
gaross - 10 Sep 2003 19:26 GMT Your husband had it (on an earlier thread just posted today), and now your son is diagnosed? A Doctor should likely do any proper assessment. Are there any other changes that might affect what's happening (I'm not trained in child psychology, so I don't know if there'd be any chance of his emulating his Father.)
What I *Did think of though, when I saw the *2 posts, was My initial Complex Partial seizures were caused by (1) Encephalitis in 1979, followed by (2) Monoxide Gas from a Defective Gas Furnace in early 1993. The LATTER was when my Seizures started.
Luckily my daughter had 2 Budgies at the time and they'd wake us all up 3-4x between 3 and 6AM, as the Furnace started up -- pumping Monoxide gas into the basement. If you use a Gas furnace or water heater like that would you consider getting a 'store-bought Monoxide detector? (We had the Gas Maintenance people out about 8 times --> by the time they came to the house, the Chimney was Hot and the furnace would operate properly. It Only backed up the Monoxide when the chimney had cooled down during the night.) I was hospitalized in January 1993 and February/March same year. Furnace was replaced in March with a Sealed unit that takes Combustion Air from outdoors and returns exhaust there. The Water heater has a Motor-Assisted exhaust fan now. (Both original equipment are Lamp Posts somewhere now. :-< )
That may appear to be a Longshot for your case, but I wouldn't be here if my Daughter didn't have those Budgies in 1992. And the more I read your Post then the Second one with your son also having some symptoms, well --- I'd rather be able to sleep tonight, if it had been something you might not have thought of.... G.R./
> I've been meaning to ask somebody about this for a while now, but I forget > until it happens again. Sometimes when my son wakes up (he's almost 4), he [quoted text clipped - 8 lines] > hear what other people think about it. > Kim Dave ???? - 10 Sep 2003 21:15 GMT Howdy Steve!
If she is still going to school find out if the university has an Office of Special Support (or words to that effect) for assisting students with special needs.
I know that I would have never made it without them. I was not able to focus enough to finish a test within the standard alloted time. The OSS provided me with a way to to take proctored tests and take as long as I needed.
There were many other issues that popped up because of my epilepsy. The OSS office has dealt with them all before and are able to assist a student who is attempting to find a way to resolve an issue. (Sort of like a specialized ombudsman.)
 Signature Dave ???? "Noli illigitemi carborundum decendus!"
http://www.howdydave.com
> Hi, > I'm looking for a bit of advice please on behalf of my 22 yr old daughter. [quoted text clipped - 43 lines] > Cheers, > Steve. Pablo - 10 Sep 2003 21:26 GMT G'day Steve, when we're asleep our seizure threshold is lowered so it's more likely to have a seizure at this time. if your daughter was aware during the seizure it would possibly have been only a simple partial seizure which may stand on it's own or be the prelude to something a little stronger like a complex partial or a tonic clonic (grand mal) seizure. by the sound of it your daughter seems to have these seizures so infrequently that they are only a worrying nuisance. the best advice would be to tell the doctor/neurologist about this occurrence and find out his reaction. it's a good idea to keep a diary of any of these occurrences as it may help the doctor and write down any questions you may have for the doctor as it's easy to forget when you get into his office. this site www.epilepsyidaho.org-seizure has some good descriptions of types of seizures, maybe it can help you identify what daughter has. pablo
> Hi, > I'm looking for a bit of advice please on behalf of my 22 yr old daughter. [quoted text clipped - 43 lines] > Cheers, > Steve. Steve Thomas - 11 Sep 2003 14:28 GMT Thank you all for your help and advice, I appreciate it. Regards, Steve
Steve Thomas - 11 Sep 2003 14:32 GMT Hi pablo, Is the link you posted correct please? I can't get it to work. Cheers, Steve.
Julie - 19 Sep 2003 01:04 GMT Hi Steve, I haven't been checking in with the group for quite some time, but I see the others are taking care of your needs and even sending you to my link. Thank guys.
I will share with you what those of us who have tonic clonic (grand mal) seizures feel like when we are coming out of a seizure.
First we start to become aware, some of our senses come alive before others. I can hear before I can see. And forget about talking for awhile. I think that is where the panic and crying may come in. It is a terrible feeling to feel like you are not in control, and that you can't communicate when people are yelling at you.
And of course there is the exhausted feeling like you've been run over by a train or a mac truck. This is because your body's muscles have worked so hard (a good reason not to hold a person down during a seizure). So I am very tired for a couple days, it may take 2 weeks to recover. On the positive side, my seizures have been under control for over 8 years now. :-)
Hope you are able to understand your daughter's needs and get her the help she needs.
Take care, Julie, Volunteer Webmaster Epilepsy Foundation of Idaho http://www.epilepsyidaho.org
> Hi pablo, > Is the link you posted correct please? > I can't get it to work. > Cheers, > Steve. Bob - 19 Sep 2003 02:08 GMT > Hi Steve, I haven't been checking in with the group for quite some time, > but I see the others are taking care of your needs and even sending you [quoted text clipped - 5 lines] > Epilepsy Foundation of Idaho > http://www.epilepsyidaho.org Hi Julie
Welcome back!
Pehaps my eyesight is going? but I'd like to offer a suggestion for the website. In the blue box in the upper left of the homepage, there is far too little contrast between the print & the background. It's simply very difficult to make out what the various typed selections are. Might I suggest that the blue background be lightened somewhat so that the type stands out better?
Bob
Julie - 19 Sep 2003 04:41 GMT Thanks for the suggestion, Bob. These graphics were created many years ago by my son and I have been meaning to make some changes. Now I just need to find the time. I believe the problem is the colors are not "web safe". They look fine on my computer, but on some computers they do not look the way intended.
Take care, Julie
> > Hi Steve, I haven't been checking in with the group for quite some time, > > but I see the others are taking care of your needs and even sending you [quoted text clipped - 18 lines] > > Bob
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