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Medical Forum / Diseases and Disorders / Epilepsy / September 2003

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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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