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Medical Forum / Diseases and Disorders / Epilepsy / December 2004

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my3sons845 - 20 Dec 2004 00:51 GMT
Hello
I hope this e-mail finds everyone healthy and happy tonight!
I am searching for any information regarding my 18 month old sons'
seizures.
Nov. 22nd...the monring they occured, first off, he had swollen glands for
months, told ear infection, cold etc, was not himself at all.  Started a
temp on a friday morning, was sent to er, to rule out pneumonia, the dr.
told me he has a cold ( yeah, and this is my youngest of 3!) anyway, all
that weekend, fever and not himself at all.
Monday comes and i am holding him, he just awoke from a nap, i thought he
was arching his back, but he was stiff and went uncons. on me, I called
911, then he had a series of 3 or so full body seizures, stop breathing,
then have another etc.. well, once i finally agreed to lay him on the
phone ( the dispatcher told me to), he had a partial one, right sided and
then another one after that.
he was un responsive when the paramedics came and we were rushed to the
hospital.  There we were told, they were probably febrile, and that he
also had some obstructed airway, they did some tests, ct..normal, x-rays
normal, eeg...abnormal ( the night after his seizures, and he was
complately out, sleeping, never moved, nothing)..I brought the eeg to a
very well known neuro in NY, where he told me that the left and right side
of the brain waves were not matching up and since the baby had "isolated"
seizures also, he is concerned.  Also, my son had a very difficult time
walking for a few days (2) and was shaky.  So we are repeating the eeg in
a week w/ sedation.
I am so scared and alone here.  My husband understands, but was not here
when it all occured.  When my son wakes up he is extremely cranky and
"dazed" a little. Which frightens me, now that I know he could have
partials.
Does anyone know why else his eeg could come back abnormal, there was no
movement at all, he laid there while they placed all the electrodes on his
head and did not awaken till a few hours later, his seizures were on a
monday morning about 10 am and eeg was done the following day, late
afternoon.
I am afraid that maybe he could have epilepsy .  I don't know where to
turn, since my family ( how supportive they are), keep saying, it must
just be febrile, but then why would his eeg be abnormal??????
Thank you for reading this, I know it is lengthy, i just do not know where
else i can find any in put!!
:)
James Pauls' scared mommy:)
Julie - 20 Dec 2004 06:32 GMT
Welcome to our ng, Jame's mommy.  I know you are very frightened, but try to
realize that you and your family will get through this.  If your child does
have epilepsy, he and you will learn to cope with everyday life and he can
grow up to lead a very productive and happy life.

I volunteer to design and maintain a website for the Epilepsy Foundation of
Idaho.  I recently added information about what they call winning kids
(children who have epilepsy) and scholarship recipients (for college
education).  I think you may find the information about these bright young
people who happen to have epilepsy very encouraging.

http://www.epilepsyidaho.org/winkid.htm  "Winning Kids"
http://www.epilepsyidaho.org/scholar.htm  Scholarship Recipients

Keep in touch with the ng and we will be happy to share our experience and
encourage your participation.

Take care,
Julie Walton, Volunteer Webmaster
Epilepsy Foundation of Idaho
http://www.epilepsyidaho.org

> Hello
> I hope this e-mail finds everyone healthy and happy tonight!
[quoted text clipped - 37 lines]
> :)
> James Pauls' scared mommy:)
my3sons845 - 20 Dec 2004 11:50 GMT
Thank you so much, Julie and Marco,
It actually makes me feel slightly relieved already, knowing that there
are others out there who understand.
Marco....The only med. I was given was Diastat, in case the seizures
happened again, but truthfully, it was so frightening, that I am unsure if
I could handle administering it to Jamie.
So, yes, the eeg was abnormal, and I am still unsure of what that means,
other then the left and right sides do not measure up the same, and I
believe that has something to do with the fact that the "isolated"
seizures he had were on the right side only.
The neuroligist, also said that once this eeg report is in ( we are having
it done on jan 5th or 7th), then we will discuss medications, which makes
me believe that the dr. feels there may be something other then the
"febrile seizures" that we are dealing with.
I am also to videotape him sleeping at night, which i need to set up.
Again, thank you so very much for all the advice and support, I truly
appreciate it, since I have never been at a place like this in my life.

Laryssa
Satch - 20 Dec 2004 13:06 GMT
Hello,

> Marco....The only med. I was given was Diastat, in case the seizures
> happened again, but truthfully, it was so frightening, that I am unsure if
> I could handle administering it to Jamie.

Well, that sounds pretty normal as a first aid for these kind of seizures.
When there is a real need to, you can climb the mount everest! So, don't
worry about Diastat. If necessary, have a look at:
http://www.diastat.com/about/faq.shtml

So, actually there is nothing usefull we can say because the EEG report is
not yet analysed / not yet done. Videotaping is an excellent way of
monitoring seizures as the neurologist with all his/her experiences can then
more easily see / analys what is going on with your child. However, the EEG
report is at this point the most important test.

All of luck and let's know how you go.

Signature

Thanks.

Marco
The Netherlands

my3sons845 - 20 Dec 2004 15:18 GMT
Marco,

thank you for the link so that I can be that much more familar with the
diastat.
Are you familar with the eeg's??
The one he did have was abnormal, the left and right sides did not match
up, sort of speak.  Would that be due to the fact that he had the episodes
the previous day?? Or do the eeg results usually show normal activity,
regardless of the seizures?? This is where i am worried and scared.  I can
not seem to find too much information about eeg readings, as far as is it
common for it to be abnormal the day after he had the seizures, etc.
I can not express how thankful I am for your help.
Laryssa
G.Ross - 20 Dec 2004 20:00 GMT
> Marco,
>
[quoted text clipped - 9 lines]
> I can not express how thankful I am for your help.
> Laryssa

During the eeg they usually flash lights, play sounds etc. to activate
various parts of the brain.   What it's recording is activity during the
test.  It doesn't measure anything that happens a day or 2 before.
  Possibly what they meant (above) was that one side showed epileptiform
waves (minor or other szr. electrical activity) versus the other side.  Many
of us have epileptiform activity in only one side or area of the brain.
That also is the area where we might get an aura or pre-seizure sensation --  
feeling of deja vu, jamais vu (where we are lost even if in a normally
familiar location),  strange taste or aroma that's not there -- lemon, eggy,
etc.   Doctor's can use those sorts of Auras to locate the most likely place
where the seizure launches from (the seizure focus).
   (I forgot to bring along your child's age. :-<  I'll look it up on older
post.  If they're too young to describe the feelings of auras above, the eeg
would still display the location of any electrical activity.   Also if they
happened to have szr. activity since birth, any feelings they have would
always be 'normal to them' since it's all that they've known?  So the
medical tests can be more help locating and assisting the Dr. in determining
how best to treat the szrs. and if they are happening only intermittently or
more frequently.)
  Another thing, but we haven't had a lot of people post recently -- a few
of the older posters said some of the pills or liquids (again depending on
the type of szr. and treatment recommended), had to be given at lower dose
but more Often during the day because younger folk digest foods and
medicines more rapidly than us olde timers.  So while I can use a Controlled
release pill 1-2x a day, others might need the lower dose 3-4x spaced out to
keep a stable blood level of the treatment.  I hope the Dr. is able to reach
that with you easily.  Maximum control is So neat, and it stops disruptive
smaller seizures from interfering with e.g. concentration, learning, memory
etc. that many of us still have.
     I hope he has success with whichever treatment they choose.  Keep us
posted with how you're doing.  That's what a support group is for.    G./
my3sons845 - 20 Dec 2004 17:36 GMT
Dear G~

Thank you very much for your helpful reply.  My son is 18 months, they did
not use anything during his first eeg, he was out cold and that was all
they wanted at that time, not by meds, but by being "out of it" for so
long.  The neurologist did see that he was having difficulty walking,
steadying himself a few days after his seizures.
The only med, I have here is Diastat, and the Dr. did say that after this
next eeg, on 1-5-05, we will discuss the findings and any possible meds at
that time.  I have this "gut" feeling that jamie is epileptic.
It is so frightening right now to not know too much, but you and this
support group really have shown me that I, as well as many others are not
alone in this.
Thank you again :)
Laryssa
CyberCafe - 21 Dec 2004 14:02 GMT
> Dear G~
>
[quoted text clipped - 6 lines]
> next eeg, on 1-5-05, we will discuss the findings and any possible meds at
> that time.

> I have this "gut" feeling that jamie is epileptic.

It's too early to jump to that conclusion.  Even if his EEG was abnormal when
he was sick, it probably will return to normal after he is well again.  Even
us folks with diagnosed epilepsy usually don't have a constantly abnormal
EEG.  I've known some kids who had febrile seizures who did not have epilepsy
(no sign of it when they were older).

I have problems myself with increased seizure activity if I get really sick
and/or run an elevated temperature (and not a very high one either) for a
prolonged period of time.  My old neurologist said it was like febrile
seizures in kids (but I have true epilepsy; simple partials and complex
partial seizures).   In my experience, some minor symptoms can appear even
before you know you are sick, and there can be minor symptoms that hang on
until your health is considerably better.

Here's a link for you that should help calm your nerves:
<http://www.pediatricneurology.com/new_page_2.htm>

Barb

> It is so frightening right now to not know too much, but you and this
> support group really have shown me that I, as well as many others are not
> alone in this.
> Thank you again :)
> Laryssa
Theo - 20 Dec 2004 17:52 GMT
>    Possibly what they meant (above) was that one side showed
>    epileptiform
[quoted text clipped - 6 lines]
> locate the most likely place where the seizure launches from (the
> seizure focus).

On my first visit to a Neruo when I was 18, he said that sometimes children
who have seizures can grow out of them, so to speak, if thats the correct
way to put it. But this was many years ago and maybe someone more up on
this can say whether or not this still holds true.
Satch - 20 Dec 2004 19:46 GMT
> On my first visit to a Neruo when I was 18, he said that sometimes
> children
> who have seizures can grow out of them, so to speak, if thats the correct
> way to put it. But this was many years ago and maybe someone more up on
> this can say whether or not this still holds true.

This is still true. Chances are "very" high when one is controlled almost
immediately while taking a low dose of medication. When one is not
controlled with medication after first seizure and multiple medications /
doses needs to be "trialled and errored", then chances are dropping a bit so
to speak. Of course, this is not a one to one relationship as I would say:
anything is possible. Epilepsy however will never be cured by medication or
will never go away...it is just waiting to come out when seizure threshold
drops. I am the perfect example of this as this happened to me :-)

But yeah, outgrowing epilepsy happens with lots of people. Just lots of luck
and regular lifve style.

Signature

Thanks.

Marco
The Netherlands

G.Ross - 20 Dec 2004 20:22 GMT
Well, see !! (my earlier post where I didn't remember their age you posted).
At 18 *months, they can still get info. from the EEG, but won't get any
input from the child wrt. any auras they experience. :-<    Several of us
were able to tell the Dr. for example that we get a sour or eggy taste or
aroma ahead of onset, or a feeling of deja vu or jamais vu that didn't make
Sense, but was a sign of a particular szr. type that was able to be cross
referenced with the eeg or mri's that were run.

 In addition to Julie's Idaho website, they have links to Ep. Foundation of
America, or there might also be general information on Childhood types of
seizures and how they might differ (if they did) from adult types.  It's at
http://efa.org  .  It also has a medications glossary that you can compare
with anything you get from your pharmacy to see that they all cover any
advice on how to use a medication and if there are things to avoid which
might conflict with a particular type of pill.
  There are others around with children too.  You might hear from them
after the Christmas rush is over.   You could repost your earlier notes if
you don't get a lot of replies over the next ~5 days.   G./

> "my3sons845" <galcj3@optonline.net> wrote in message
news:53f813f2869839a91a56c0b2e5b469f6@localhost.talkaboutsupport.com...
>> Marco,
>> thank you for the link so that I can be that much more familar with the
[quoted text clipped - 18 lines]
> Many of us have epileptiform activity in only one side or area of the
> brain.

*****G.** BELOW wouldn't apply since they are too young to tell you 'hey I'm
having a Deja Vu -- or know what that was, while they were having one.

> That also is the area where we might get an aura or pre-seizure
> sensation --  feeling of deja vu, jamais vu (where we are lost even if in
[quoted text clipped - 9 lines]
> determining how best to treat the szrs. and if they are happening only
> intermittently or more frequently.)

*** Another thing, if you get a 'name' for the type of seizure, is some kids
might have childhood onset, but might grow out of some types of seizures.  I
don't know how many people we currently have reading the group, but they
might have experiences to share if they see more specific stuff they can
relate to wrt. their own children's experiences.  /

>      I hope he has success with whichever treatment they choose.  Keep us
> posted with how you're doing.  That's what a support group is for.    G./
my3sons845 - 20 Dec 2004 15:23 GMT
Marco,
I am not sure if my last post came up, but I wanted to thank you for the
link, I just read it and saved it in my favorites.
I am very worried about the eeg results though.  Since they did show a
difference in the brain waves of the left and right sides, would it be
normal, normally?? Could the episodes Jamie had, make it abnormal the day
after?? Or are eeg's usually only abnormal when there is something wrong?
I can't seem to find enough information about the eeg readings and whether
it should have been normal or not.
We will be repeating the eeg on Jan 5th with sedation, to get a better
look.
Laryssa
Satch - 20 Dec 2004 17:10 GMT
> I am very worried about the eeg results though.  Since they did show a
> difference in the brain waves of the left and right sides, would it be
> normal, normally?? Could the episodes Jamie had, make it abnormal the day
> after?? Or are eeg's usually only abnormal when there is something wrong?
> I can't seem to find enough information about the eeg readings and whether
> it should have been normal or not.

It is completely normal that you are worried about the outcome of the tests.
I would be worried as well! When your child has epilepsy, most of the times
this is captured by an EEG test. However, EEG tests are not always
conclusive I am affraid. That is why sometimes there is a need to do a
second test.

Normal electrical activity in the brain makes a recognizable pattern.
Seizures, which are rarely seen in EEG's, produce very specific, abnormal
patterns. Even without your child having a seizure, doctors can recognize
abnormal patterns that are markers for the risk of seizures. The patterns
are called different names. Common names for these abnormal patterns are
spikes, polyspikes, sharp waves and spike and wave complexes. These patterns
can tell your doctor a lot about your seizures, including the part of the
brain where your seizures start, and may even suggest which medicine might
be best for you.

When did your child had his first EEG test? Was that just after his seizure?
Did the seizure stop by itself or did the ER personell use some medication
to have it stop manually? If that is the case, then the EEG test may indeed
not be conclusive as it may not show the starting point of the epileptic
seizure (if this is caused by epilepsy of course). The starting point can be
anywhere in the brain: the right temporal lobe, the left temporal lobe or
both temporal lobes (which means you cannot really call it a starting point
anymore).

A normal EEG does not rule out epilepsy. There may have been no seizure
activity during the relatively short time the test was given, or the seizure
activity may be located in such a small area of the brain that the surface
electrodes failed to pick it up.

As was said before, with epilepsy one can have a complete normal live. The
only thing that a person with epilepsy must take into account is staying
alert and try to avoid any so called triggers like stress, lack of sleep,
too much alcohol, etc., etc. I was diagnosed with epilepsy when I was a baby
and I outgrown epilepsy when I was 2 or 3 years old, I got it back when I
was 9/10 or 11 years old (that appears to be normal) and outgrown it again
when I was approximately 15 years old (can't remember the exact dates). This
year I got it back because I was stupid enough to tend to forget to avoid
the triggers like too much alcohol, lack of sleep, too much stress, etc.
Luckily for me, I have been seizure free again with a low dose of medication
and live a completely normal live. My EEG showed abnormal or epileptic
activity throughout my whole brain which means I am diagnosed with primary
generalized epilepsy.

Hopefully your child will outgrown epilepsy as well or is being controlled
(seizure free) with medication with not so many side effects, etc. Anything
is possible here.

Signature

Thanks.

Marco
The Netherlands

my3sons845 - 20 Dec 2004 17:45 GMT
Marco~
Thank you again, you are all so very knowledgeable and every bit here is
greatly appreciated!
Jamie's first eeg was the following evening after his seizures the morning
before, I do not believe the paramedics/er had to give him anything to
stop, but they did have to stabilize him and I would say over a period of
10 minutes he had 3 full bodied and 2-3 right side only seizures, in
between each one losing consciousness, then a few seconds later another
one would occur.  He had some blocked airways in the ambulance on the way,
and other then oxygen and heart monitors, nothing else until we got to the
hospital, where they ruled out septic, rsv, x-rays, ct scans, blood etc.
So, yes his seizures started about 10 am monday morning and eeg was the
next afternoon.  He never moved at all during the entire test.
The Dr. only told me that there were some differences in the patterns of
the left and right sides, slowing of brain activity.
I see you are very familar with all of this and am glad to see that again,
yours is under control, you just need to take care of yourself, to try and
avoid those "triggers".
This has all opened up a new door to my world.
Laryssa
Satch - 20 Dec 2004 20:42 GMT
> Jamie's first eeg was the following evening after his seizures the morning
> before, I do not believe the paramedics/er had to give him anything to
> stop, but they did have to stabilize him and I would say over a period of
> 10 minutes he had 3 full bodied and 2-3 right side only seizures, in
> between each one losing consciousness, then a few seconds later another
> one would occur.

Well, it is good to see that Jamie got out of the seizure himself without a
desperate need for medication to have it stop manually (that is where the
Diastat pops in). It is normal that sometimes within seizures, patients fall
into a deep sleep which may look like losing consciousness. This however
does not apply to all people that are diagnosed with epilepsy. Doctors often
use the terms pre-ictal, ictal, inter-ictal and post-ictal when they talk
about the seizure experience. Ictal means during the seizure itself,
pre-ictal means before the seizure, inter-ictal means between seizures and
post-ictal means after a seizure. For example, post-ictal confusion is a
period of disordered thinking that may occur right after a seizure. Some
people fall into a deep sleep.

There are a couple of first aid things one have to learn like how to make
sure Jamie doesn't hurt himself and to make sure he does not have blocked
airways, etc. Paramedics know these kind of things, not all people in
general public know these kind of things. There is an excellent website that
discusses this and I am sure you have already learned this by heart:
http://www.epilepsyfoundation.org/answerplace/Medical/firstaid/index.cfm

Every process in the human body involves the brain, from the simples
movements to the most complex emotion. Accordingly, seizures can disrupt any
process in the human body, from triggering involuntary physical movement to
causing a person to temporarily lose bladder control. The effect of a
seizure depends on the location of its focus, how and where the electrical
misfiring spreads and how long the seizure lasts.

> The Dr. only told me that there were some differences in the patterns of
> the left and right sides, slowing of brain activity.

If the doctor tells you there is a difference in patterns of the left and
right side, slowing of brain activity and he ruled out most of the other
things with all these other tests (MRI/CT/blood) which could have caused the
behavior you saw happenign with Jamie, then this is indeed not quite normal
which needs to be further analysed. Though I am not a neurologist, it does
look like epilepsy but here is some more information regarding this topic.
Without proper neurologists analysis, it is however still not conclusive
that Jamie is suffering from epilepsy. An EEG can show epileptical activity
but this does not necessarily have to result in a full blown seizure. On the
other hand, an EEG does not necessarily have to show epileptical activity
while that person is suffering from epilepsy.

Seizures can be compared to an electrical storm in the brain. A seizure
begins in the damaged or malfunctioning area (think of a neuron that does do
the opposite of what it is supposed to do; e.g. like short circuits with
electricity)  of the brain called a seizure focus. The seizure focus might
be a tiny lesion or scar caused by high fevers in childhood, lack of oxygen
at or before birth, damage from a virus, or a previous head injury. Some
people are probably born with the potential to have seizures, which may or
may not ever be activated.

Anyone can have seizures under certain conditions. The most common reasons
for having a single seizure are a high fever (especially in infants and
children), sleep depreviation, or a reaction to certain drugs or medicines.
Having a single seizure does NOT indicate that a person has a seizure
disorder.

Seizure occurs when a persons seizure threshold -the brains tendency to
allow seizures to start and spread- is abnormally low.

If you want someone to translate the "EEG report", then you might want to
subscribe to the following list archive:
http://home.ease.lsoft.com/scripts/wa.exe?SUBED1=EPILEPSY-L&A=1

There are medical doctors out there that sometimes answers questions and/or
translate an EEG report in normal understandable English.

Signature

Thanks.

Marco
The Netherlands

my3sons845 - 20 Dec 2004 22:54 GMT
Marco,

Your advice, support and encouragement is very much appreciated.  I will
be checking out all the links you gave me.  I will also keep you all
posted.
Is it normal for a child to be so cranky/miserable if there is something
going on in the brain?? Just out of curiousity!
owlvee - 21 Dec 2004 03:06 GMT
> Marco,
>
[quoted text clipped - 3 lines]
> Is it normal for a child to be so cranky/miserable if there is something
> going on in the brain?? Just out of curiousity!

Hi Laryssa,

Hey, I can help ya a little on this one :)!!

I'm Owlvee, and I'm an ole man that's epileptic (you'll notice I keep
asking the same questions over and over)that has found the people on
this group to be most helpful with support and info.

They'll answer the questions or get ya to the answers!

As far as cranky/miserable, my 3 grand kids (ages 1,3,and 12)are most
the time it seems ha,ha !!
(Must be me!)

Welcome to the group...........
(Please help me look for the chocolates!!!)
Satch - 21 Dec 2004 05:37 GMT
> Is it normal for a child to be so cranky/miserable if there is something
> going on in the brain??

That can be part of the game -but most likely this is becoming part of the
game when these childs start their medication.

Signature

Thanks.

Marco
The Netherlands

CyberCafe - 22 Dec 2004 04:14 GMT
> Marco,
>
[quoted text clipped - 3 lines]
> Is it normal for a child to be so cranky/miserable if there is something
> going on in the brain?? Just out of curiousity!

I don't know for sure, but I know sometimes little things after the
seizure/during recovery can be very annoying/irritating to the brain that
normally wouldn't be (sounds, food, light, movement, and on and on).  You
also have the problem with fatigue that is pretty common with most seizure
types (after a seizure).  Since seizures actually can involve the entire
body, not just muscles spasm of course or what you visually witness, your
child might actually be a little uncomfortable; it does take time to recover
and how much time depends on the person.   Sone of the folks here with grand
mals have reported a lot of soreness that lasted for days after a seizure.

Barb
Satch - 20 Dec 2004 07:38 GMT
Hi there,

Welcome to this group!

> I am searching for any information regarding my 18 month old sons'
> seizures.

You have found the right place to find the information. As I wouild say,
with knowledge comes power. Your family, how supportive they might be, may
not be the best place to get your advices as they might not know the ins and
outs of these kind of situations / epilepsy. What you describe sounds like
epilepsy and yes, EEG are sometimes not conclusive which makes it a little
bit harder for you to deal with it. However, as you say, the EEG shows
abnormal activity which means that something is not right here. So, what
does the neuro tells you about this? When is your next appointment? Did
he/she already prescribe some medications for your child? If yes, you may
want to tell us about it because some medications are specifically
prescribed for certain types of epilepsy. If he / she is not sure yet, then
he/she is going to order to do some more tests.

The most problematic part of epilepsy is, apart from dealing with it, the
diagnose period. During that time, the heavy machine artillery in the
hospitals are booting up again and then the uncertain waiting period shows
up. However, after that you know what your childs condition is, then you can
start dealing with it. But again, with knowledge comes power, so go to the
library or buy some book and start reading a little bit. A good book to
start with is:

Partial Seizure Disorders | Help for patients and families
By Mitzi Waltz
ISBN 0596 50003 - 3
USD 19.95

Fever is lowering the seizure threshold; so anything is possible at this
time. You may also want to look at google.com for the alt.support.epilepsy
newsgroup archives and read a little bit of old postings. Furthermore, find
your local epilepsy support center, so that you can get information from
them as well. These hints would be a good starting point.

Best to you and your son and if you have any questions, then post them here.
You will always get a response here.

Signature

Thanks.

Marco
The Netherlands

 
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