Hello Jason, so sorry to hear about your family scare.  Welcome to our
group.  You are taking the right steps by going to the neurologist.  I
don't know what part of the country you live in, but a neurologist who
specializes in pediatrics is the best choice for your young son.  Make
sure you tell the doctor everything you can think of.  You probably have
already planned to go in with a list of questions and every little thing
your son has done that may be related, I always carry a notebook to the
doctor.  The doctor will ask you questions to try to determine what type
of seizure disorder your son may have.

The EEG is not too scary and I think they will let you be with him during
that procedure.  They hook up electrodes to the scalp.  It doesn't hurt.
The MRI is a little scary if a person is claustrophobic.  When the test is
run you hear banging that sounds like you a in a big tin can and someone
is banging on the outside.  You have to stay very still.  In order for me
to get through this I decided to sing songs in my head to the rhythm of
the banging.  So if your son knows some songs he likes, you might practice
doing this before the test, (have him use his imagination and think the
songs while you bang on something) if you think it will help him.

Again, this test doesn't hurt, but he may be frightened by the huge
machine.  They may not let you be in the room at the time of the test
because they have to be very careful about the magnetic field.  If you
were to walk in the room with a pen in your pocket that could be very
dangerous.  The pen would fly toward the magnetic field - the MRI machine.

Others in the group who have children with seizure disorders may have a
better idea how tests are handled for children.

I work for an attorneys office filling in for their receptionist or legal
assistants.  The UPS guy happened to bump into an old friend while I was
working there.  I overheard him tell him that the latest thing in his life
is that his son was diagnosed with epilepsy.  After they finished talking
I introduced myself and told him that I happen to have epilepsy.  Ever
since then whenever I'm working there he visits with me and keeps me
informed as to how his son is doing.  He has gone from a nervous and
anxious father to someone who is coping with his son's condition and
feeling good about the progress he has seen.

I know it is frightening to see your child have a seizure but please be
assured that many of us have received good medical treatment and we have
learned to cope with our seizure disorder.

Please feel free to ask any questions and let us know how your son's tests
turn out.

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

On the day of the MRI, wake him up early & keep him awake. Chances are
that he'll go to sleep during the MRI. It works for me but I don't
know how practical it is for anyone else, particularly a young child.

I think what they are talking about is that the 1% represents people with
"true" epilepsy (I think I've seen figures as high as 3%).  The higher
figure, the 4% to 6% probably would represent seizures caused by all types
of conditions, some of which may be temporary such as hormonal changes in
pregnancy, or diabetes, illegal drug use, alcohol abuse, etc.

There are different types of seizures including febrile seizures, which
seem to occur only with an elevated temperature, which the child might
outgrow.  They don't really consider febrile seizures to be "true"
epilepsy.  There is a lot of information on the web about the various
seizure disorders.  The more you learn about seizure disorders, the better
for you and your son.  The statistics I've seen only deal with "true"
epilepsy, and a person has to have more than one seizure to be put in that
category. I'm not talking about febrile seizures or seizures caused by
diabetes or other medical conditions that when the disease/illness is
controlled, there are no seizures.

It's an EEG.  Neither the EEG or the MRI involve injections or pain of any
kind.

Just follow the doctor's recommendations for now.  This stuff is all new
to you and, of course, you're going to be scared and worried, but in most
cases there is nothing organically wrong (in other words, they can't find
a cause).  The EEG and MRI can be normal in persons with epilepsy.  If
they want to run the EEG again, perhaps after depriving your son of sleep,
that's normal.  The doctor might put him on medications even if they are
febrile seizures.  If they are febrile seizures, you might have to be more
aggressive in not allowing elevated temperatures to run rampant.  The
parents of children I know who had febrile seizures just had to watch more
carefully, take the child in to the doctor as soon as they suspected an
infection (particularly things like strep throats) in order to try to
avoid elevated temperatures and possibile seizures from that.

It might be nothing or it might be he is having another type of seizure
before he has a second type of seizure.  In other words, a simple seizure
or complex partial seizure can come before a grand mal.  This is just an
example because nobody knows if he is having seizures, and if so, what
type of seizures.

Sometimes movement can act as a trigger for seizures.  It's called
photosensitivity.  I have this myself and have noticed it's not only
movement but bright colors, patterns, reflections from shiny objects, and
so on that can irritate the brain enough to cause a seizure.  Some people
can't tolerate other external stimulus (such as some sounds).  In my
experience, a seizure is not triggered immediately by exposure to a
stimulus.  The exposure has to kind of build up until the brain kind of
gets irritated enough and then has a seizure.  I can't tell you how long a
person would have to be exposed to a stimulus or what combination of
triggers would do it because I haven't figured that out totally for myself
yet.

Barb

Hi, so sorry to hear of you frightening experience. Just wanted to let you
know what the hospital does for my child when she has her tests. She is
sedated for her MRI's,as she gets too stressed out otherwise. There is no
point scarring them to bits, this way she sleeps right through it. She
doesn't mind the EEGs at all, in fact she thinks she looks kinda cool, with
all the wires stuck to her head. Hope this helps, all the very best .
Kerrie.

did your child have any vaccinations in the last month or two?

When my 6-year-old boy had his first seizure Christmas night of last
year, I just about fell apart (having just gone through my wife's
chemo, my mother's stroke, and losing my job, I had about had it).  It
was a grand mal.  It was terrifying.

My boy had a bit of a hard time with the MRI they gave him.  Very
noisy, like people are saying, sounds like being in a tin tube that's
being beaten like a drum.  Wish I had known about the CD player idea.
I was in the room with him, and I made faces at him in beat to the
rhythm, and tapped his leg.  And they tell you in school that making
faces will get you nowhere...

The MRI did find something.  The doctor said there was only a 1 in 3
chance it'd happen again.

Last night he had his second (as far as we know).  Much more mild
seizure.  Day after Thanksgiving.  I'm going to become a Jehovah's
Witness so I can avoid all holidays.  So, it's back to our
neurologist, thank The Lord he's a fantastic pediatric neurologist.

I responded to your message for two reasons:

1.  The stiff neck.  Very interestingly, my son had a mysterious stiff
neck about 2 months ago.  Lasted about a week and a half.  His doctor
had no idea, but said it was a "viral thing".  He said he had 2 other
kids with mysterious stiff necks.  I live in So. Calif., maybe it's a
viral thing, or maybe, as people are saying, my son hurt his neck
having a seizure we weren't aware of.

2.  Your scary future.  My son is now seven.  My wife and I didn't do
any preperation or study about seizures since the doctor said chances
were only 1 in 3, and he also said there wasn't much to be done.
However, with all that, and with this second seizure coming out of the
blue, it was much easier than the first.  I don't feel nearly as
terrified of my and my son's future as I did after his first.