Hello,

I am not a parent having a child that is being diagnosed with epilepsy but I
may still be able to share some suggestions with you.

In your situation and at this point, try to get as much as information as
you can so that you know what the neurologist is talking about, ask as many
questions as you can think of in this support group or contact your local
Epilepsy Foundation.

For example, here are a couple of URLs:
http://www.epilepsyfoundation.org
http://www.epilepsy.com/

It all depends on in what country/city/state you are located on of course,
but most countries do have a local Epilepsy Foundation.

You already found this support group: that is a very good place to start
with as well. In additon and as you said: the CT-scan and MRI-scan were OK
but I can surely understand that it scared the hell out of you finding your
child on the floor and that you feel so sorry for her having her all wired
up to all these machines, etc.

Best to you.

Welcome to our group, I am truly sorry to hear of your terrifying
experience.  With knowledge comes empowerment.  Find out as much about
your child's seizure disorder as possible.  And as Marco already mentioned
get in touch with a local support group.  Where do you live?

I have lived with epilepsy since I was a teenager, I have reached the half
century mark and I continue to learn about how to take care of myself.  I
was just telling my husband tonight that I needed to rest because of the
way I was feeling and last night I had a restless night of sleep. (so what
am I doing on the computer at 10:45 at night) I'll go to bed in a minute.

As I was saying, I told him that I remembered that one night years and
years ago I had a grand mal (tonic clonic) seizure after I had been up
late at night cleaning up the garage.  So I learned from that experience
that I need to pay attention to how I feel and not push myself.

I work from my home, but I also work for some attorney's filling in as a
temporary employee.  One day I overheard the UPS man talking to a friend
about his son, who was just diagnosed with epilepsy.  So after they
finished their conversation I mentioned to him that I have epilepsy.  Now
whenever I work at this attorney's office and I see the UPS guy he
remembers my name and I ask how his son is doing.  I saw him last Friday
and his son has gone 1 year seizure free.  Hopefully your son will get
medication that will be therapeutic for him and you will be sharing your
knowledge with your friends and neighbors, your children's friends and
teachers and you will be telling our newsgroup that your son has been
seizure free for so many years.

We will try our best to answer any of your questions.  For instance if you
want to know what it feels like to have a tonic clonic seizure, we can
give you our experience.

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

That sounds more like an absence seizure to me because it's identical to
what happened to my daughter, except that my daughter was put onto sodium
valproate sugar free syrup.  

My daughter had her first one at 2 and spent a night in hospital.  They
thought that it was a fibrile convulsion initially because we'd been out
all day going to and from the cold into hot places and my dau had been in a
snow suit.

She didn't have another one until she was 6.  She was unconscious for
nearly 6 hours, on oxygen for 3 and then a drip for 24 because when she
woke up she was promptly sick.  Initially they put it down to a virus
because all the tests; blood, urine, etc came back normal.

Two months later she had another one, similar but milder.  That's when it
became obvious that it was epilepsy.

Two years ago my daughter had an EEG done and the result came back that it
appeared normal but they weren't sure if it was due to the effectiveness of
the medication or whether she was no longer epileptic.

Earlier this year she had another EEG done and, joy of joys, she was clear

dance exams, karate exams, been in two school plays, all with no problem at
all.

She'd been under a lot of stress because of traumatic family issues.  Once
those issues were resolved, she was able to relax again.

You're obviously going to worry but please try not to.  Your daughter is
young and she *may* grow out of it as my daughter did.  Obviously I don't
know what your family situation is, but it is possible that your daughter
is having to deal with things that she is finding stressful for some reason
and she's getting a system overload and it's short ciruiting.  I'm not
saying that is the case but it's a possible scenario.  It's what happened
to my own daughter.

My son (12) is also epileptic but an entirely different reason and he has a
wide range of fits/seizures: grand mal, petit mal, absence (occasionally)
and just about everything in between!!  My son is also autistic and has
left side hemiplegia.

He does fit in his sleep sometimes but he's never yet had any problems.
He's been epileptic since birth and deals with his fits/seizures far more
easily than most people around him, especially those not used to dealing
with an epileptic.

He can have a fit/seizure at any time and he also self-induces them by
hyperventilating!!  His paediatrician has seen him do it too, which is a
good thing in a way because it proves what I have said :))

He's also on sodium valproate having initially been put on Tegratol.
However in view of what gaross told me last week, I'm a little concerned
that your daughter has been put on Tegratol.

This is what he said in his post dated 04/07/2004 timed at 04.32.32:

<quote>

** I've used Tegretol now for almost 9 years, and the dose was reduced
(with a 2nd med. added) about 5 years ago. My understanding (now) is it's
Rarely used on someone younger than Adult,  as it can attack Calcium in
some people, interfering with Bone and Tooth development.  There is also
risk of withdrawal symptoms or seizures if it's not kept at stable blood
levels -- something that's harder to do with someone Young who has a faster
Digestion rate than adults.
  There are also lots of things that can interfere with it (Grapefruit is
one, upset stomach remedies and other Cold medicines- especially if they
contain Alcohol),  but I'd assume now that the Calcium thing in someone
whose Bones and Teeth are still developing would be one of the areas where
it might cause problems that someone who's younger.
  Also when I was increasing my dose in 1995, we did Bloodwork about each
4 weeks over 4 months to monitor whatever they were watching for.   That
was for an Adult using it.  G./

</quote>

Please try not to worry too much.  Your daughter will learn to cope with it
and it may not be the life sentence it seems to be at the moment.  It
wasn't for my daughter and she's now 9.

If you want to mail me, let me know and I'll give you an email address you
can use.  The one in my posts is a spam trap.

Hugs to you all.

 Go to Julie's Site, at end of her earlier post.  There are 2 First aid for
Seizures charts, you can print.  You probably only need the main one,
although look at the one for Water too, since the same can apply with
Bathtubs.   Most of us use Showers when first diagnosed until we have
control.
  Tegretol seems a little strong for a child, since there are other meds.
that can get control without the withdrawal effects or trouble getting a
balance to a child's digestion rate and body weight as they grow older.
But hopefully the Doctor will be monitoring that.  (If she stays on the
Tegretol, you should tell her Dentist if she goes for checkups that she's
using Tegretol and whether it's a controlled release version (CR or XR) or
another type.)

  From Julie's site, or Direct via http://efa.org , is the U.S. Ep
Foundation of America site that might have other information of use.
There's a medications glossary if you didn't get a printout from the
Druggist on how to use the Tegretol, and will give you a one page printable
version.  /G.

P.S.  You could ask the Dr. why her szr. just showed up now.  I was going to
ask if there's anything new in her Room or where she's sleeping (new
furnace, new ventilation, etc.) that might affect proper rest, but the
Hospital tests seemed to suggest they had found a Seizure Focus where her
seizures might have came from.  Still I wonder why any effects didn't show
up, e.g. at 2 years old or 4, but now?   /

I'm not in a similar situation but I know that being terrified won't help
her and it won't help you.

You've made two sensible decisions: 1) to get medical advice and 2) to
contact us. Try to relax a little and remember that people who have fits -
at any age - rarely choke. Even your daughter didn't during her seizure -
you way that you saw vomit in her hair. That means that it caused no damage.
Vomiting itself isn't all that common during a seizure.

Your baby is very precious to you and every deviation from the perfect
upsets us as parents. But we have to learn to live with conditions which
make us less than perfect (there are more difficult ones than epilepsy) and
being calm will help all of you. Don't panic, please don't panic.

You're on the path to a lot of learning, if you're not tense you'll learn
things and retain them better.

As your daughter grows she might resent being watched over constantly and
worried about, she must be allowed to develop normally, while understanding
her condition.

Do keep in touch with the group and let us know how you go on, we're hear to
listen to your fears and allow you to vent. Better to do it here than at
home :-) And do let us know where you are, there might be someone here who
can give you more local advice.

We'll all be thinking about you,

Hugs,

Mary

Was she sick before this happened?

There is less chance of any of that happening if she is on effective
medication (and let's assume her medication will be effective).  I saw
that another person was concerned about Tegretol because of the calcium
issue.  I know that's also a problem with Dilantin, and maybe it's a
problem with other seizure meds; I don't know.  It's too early to worry
about the calcium issue; the highest priority right now is preventing
another seizure.  Tegretol was the first medication they gave me and it
worked extremely fast and very well.

My children have been hospitalized for a variety of reasons.  Yes, you are
going to worry and you are going to become exhausted from watching/taking
care of the child.

Suggestions:

  * Read the drug information sheet (for side effects, etc.)
  * Learn first aid for your daughter's type of seizure (such as rolling
    on her side to prevent aspiration of vomit.).
  * Learn about safety issues.
  * Learn about the type of seizure disorder your daughter has.
  * Observance.

The safety issues are high priority, but to give you a head start, your
child should not be left alone during bathing (for now), turn your hot
water heater temperature down (to prevent burns).  Avoid heights (upper
bunk beds, etc.).  Pad/move sharp corners (like on furniture).  May have
to put carpet on hard floors.  Avoid bike riding in the street for now
(sidewalk is okay).  Keep child away from heat sources that could result
in burns (pots and pans on the stovetop, burning candles that could be
knocked over, etc.).  Keep child away from sharp objects.  Note that some
of these are temporary restrictions.

Observance covers a lot of territory including timing the seizure, trying
to find triggers, if any, that might provoke a seizure (such as illness,
photosensitivity, etc.).  Observance would also include learning what's
happening to your child before, during, and after a seizure.  For example,
it may appear that the person has recovered from the seizure because they
are up and about, but they really aren't recovered.

Barb

I have yet to read the other responses but I just want to give you my
support. I have a 5 yr old girl and the thought of her going through what I
go through eats me up.  My daughter saw me have my first seizure and she
says she cant get the picture out of her head. I will say a prayer for her.

Piper