I'm not one to say anything of much value, being that I'm experiencing the
same kind of seizures only as an adult, but I am also on tegretol - even
though it's at an adult dosage - and it is helping but it is also in
combination with depakote. While the two actually work against each other,
I'm also bipolar - hence originally having depakote anyway, I'm at a high
enough dosage of both for both to work. However, I'm always drowsy.
Extremely. I don't know what baby dosages do for children. Perhaps there are
different side effects at that age.

One thing I will tell you for sure is, I received the scans, EEG and MRI,
and while they did induce a seizure on the EEG, the MRI scan results were
something like "mostly normal" or "almost normal" or something. They said it
was supposed to come off as normal. Why? Had it not, then they'd likely have
found a tumor or something of the sort in my brain and it wouldn't be
seizures or epilepsy at all but possibly cancer or such.

So, the glass is half full.

If this helps any, I would be surprised but be thankful that the scans *did*
show a healthy brain. Dealing with epilepsy or seizures in general is not
nearly as large a concern as something those scans might show in the
brain/head.

I hope Delilah feels better in time and the doctors successfully treat her.
Pretty name for a child, by the way.

Sean

What about Phenobarbital? And did they check everything, like ionized
calcium? My son had many seizures from 3 to 5 months, due to hypocalcemia.
Maybe something simple like that? Disclaimer: I'm not a doctor!

Hi Cynthia / Joshua,

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.
You certainly found the right place to start posting / start scanning
through this newsgroup / finding all the information from people with first
hands experience so to speak. There are people from all over the world
looking into this newsgroup (I was raised and born in The Netherlands, so
sorry for my poor English) and some of them are really frequent posters
-meaning they have an awfully lot of experience regarding this topic and
yes, we regularly see new posters that just became parents and their baby
was being diagnosed with epilepsy as well.

Personally, I am almost 30 years old and when I was a baby I was diagnosed
with epilepsy as well. Though my parents can't recall correctly and 29 years
ago epilepsy was not that familiar as it is right now, I had grand-malls
type of epilepsy as well (but it may well be another type of epilepsy -I
really don't know but they surely did not took one hour or more). My parents
thought it was their end of their world. Luckily, I was diagnosed quickly
and a quick treatment was being done. Medications helped and at that time, I
had to take: Phenobarbital  / Luminal  /Alepsal (brand names differ per
country so I try to list all of them) and Diphantoine / Dilantin /
Phenytoin. These worked quite well and they started discontinuing the
medications very quickly. After a couple of years (we cannot recall how long
it took to become seizure free /meds free) I was not taking any meds and I
was seizure free.
During early childhood, absence type of epilepsy came back (which appears to
be normal according to statistics) and they prescribed me Depakote /
Depakine / Depakene and again after a couple of years (we cannot recall how
long it took to become seizure free /meds free) I became seizure free / meds
free. Now, at the age of 29, I am being diagnosed with primary generalized
epilepsy because of a combination of having been "binge drinking" since late
childhood during weekends only, having lack of sleep and having stress in
the beginning of this year before the tonic-clonic seizure occurred in mid
February. They presribed me 1000 mg of Depakote ER / Depakine Crono /
Depakene ER (brand names vary per country).
Right now: with medications I am seizure free and I am not terribly hit by
the side effects which is great.

What I am trying to tell here with my small personal history is that it
somehow proves that people who have been diagnosed with epilepsy since their
earlies can have a good live and yes, epilepsy will have to be part of their
live and the live of their relatives. Epilepsy will sometimes affect what
they can and what they cannot do. My personal history shows that I "tended
to forget" I was diagnosed with epilpsy and wanted to be "normal" -having
similar weekend experiences as my friends during late childhood, etc. So I
learned from that experience that I need to pay attention to how I feel and
not push myself in any way. I also had to accept I am diagnosed with
epilepsy and that this is not going away anymore.

So, as I already indicated with my lengthy posting: I am not a parent having
a child that is just 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 may also want to become a member of
http://home.ease.lsoft.com/archives/epilepsy-l.html which is an E-mail based
/ Website based community. I posted a couple of questions and some Medical
Doctors working for huge epilepsy centers in the US responded to me directly
using my personal E-mail address regarding specifc questions I had in
regards to my personal diagnoses. It is not a rule of thumb that they
respond to every question but in my case, they responded which was great.

So, 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, EEG-test and MRI-scan
were OK but I can surely understand that it scared the hell out of you
experiencing this and of course you feel so sorry for her having her all
wired up to all these machines, etc.

Hopefully she will get medication that will be therapeutic for her 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
she 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 / simple partial seizure / complex partial
seizures, etc., etc. we can give you our experience. There are others out
there as well that are in a similar position as you are in right now -let's
us try hard to trigger them to respond to you as well.

Best luck to you.

Marco

You will have all those things from the people here.

I have no experience, direct or indirect, of infantile seizures but wanted
to assure you that we all care and, as you've already seen, some people do
know about the condition and can do something more than I can.

You are welcome to a ng no-one wants to join! And please keep in touch to
let us know what happens.

Hugs to all of you,

Mary

Hi Cynthia!

From your description I fail to understand why she was diagnosed with
Epilepsy when a single EEG was normal.  If she has another seizure check her
temperature, febrile seizures are very common at this age and do not
necessarily mean your daughter has epilepsy.  There are a number of
disorders that resemble or mimic epilepsy but are in fact not.  Our daughter
has epilepsy and is very sensitive to temperature so ear infections, colds
and teething trigger seizures.  I would make sure to repeat the EEG in a few
months to see if there are changes or to see if it is still normal.  Someone
else mentioned Pheobarb which is usually the first course of treatment for
children, I am not sure about Tegretol.

The baby brain at this age is in a constant state of development and only
starts to stabilize at around 2 years.  So you may see a change in the
presentation of her seizures going from tonic-clonic to something else.  Or
they may disappear.

If possible record her seizure with a camcorder or digital recorder.  We did
this and it turned out the seizures we were describing were not what the
neurologists thought (based on our descriptions).

Your story sounds very familiar as our daughter (2 on Monday) had her first
tonic-clonic when she was 8 mos old during her sleep.  We found her at 7 am
paralyzed on one side, and vomiting (Todd's paralysis an artifact from a
long seizure).  Her EEG wasn't perfect but it was "OK".  She was put on
Phenobarb and was fine for 2 months.  She then started having head drops up
to 3,000 per day, in this case her head would nod a bit (we called them
noddies) and she would lose all body tone and fall to the floor (she was
walking at 10.5 months).  She was rushed to Emerg 6 times from Nov '03-April
'04, Diastat also did not work and she was in status for about 45 minutes on
3 occasions.  We now carry rescue meds that included Ativan, Diastat and
Paraldeyde to be usd under specific circumstances (we haven't used
Paraledyde yet which I believe is only used here in Canada).  She has been
on Phenobarb, Clobazam, Topirimate, CLonzaepam, Lamictal, Keppra, Valproic
in various combinations. Her EEG has progressed from "OK" to extremely
abnormal, yet she walked early, and hit most of her milestones either early
or on schedule.  She now has "twitchies" which we thought were myoclonic
seizures but turns out from the video we captured are astatic absence
seizures, which may alter her course of treatment.

We now have her on Valproic, Lamictal and Keppra and she is on her 4th week
of the Ketogenic Diet.  Since the diet we have an almost normal healthy girl
for the first time with seizures.

My main advice is to read, learn and question everything.  If you are not
comfortable with the advice given by your neurologist do not hesitate to
request a consult with other experts.

Carl, Martina and Alyssa

**G* Some adults in the UK (~3 years ago here), were able to use "Rectral
Diazepam" ?  I don't know if something like that would work for a child so
young, or if the Dr. would prescribe or recommend it.  Depending how you're
giving the Atavan, above might be easier?  (My atavan is a sublingual pill
that I have to keep under my tongue 5 minutes until it dissolves.   A child
so young couldn't do that, that's why I assumed your atavan was an
Injection? or ?? )  /

**G* I'm not a Doctor, I just use Tegretol CR Tablets.  I thought that
Tegretol (even liquid) wasn't used often on children, especially someone as
young as 5+ months of age, because of possible effects on Calcium levels in
tooth and bone development?   But I don't know what else is available for
someone so young.   Your pharmacist or the http://efa.org  site has a
medications glossary where you can enter the Med. type and see what it says.
  Also a pharmacist is usually easier to reach to discuss stuff like above,
since they also get the Scripts from Manufacturers if you can't find much
online about it.
   OR you could try http://google.com   (?) and search for  '
children&tegretol '  to see if there are other articles on the 'net than
just our's here..
  NOTE in case it's not there on a child's site -- don't give her upset
stomach remedies while using tegretol, OR anything that contains *grapefruit
juice .    One of the acids in G.fruit interferes with the operation of the
tegretol.  And some of the upset stomach remedies might remove the seizure
medications -- ask a pharmacist what to use if you need anything like the
latter.  (I don't know how you'd know someone so young was having an upset
stomach. :-< ) /

**G* Those are Good Signs in my opinion.   Did they suggest any other things
they could look for, like allergies or other causes that might be harder to
detect?  (I know an EEG only measures a seizure if it happens during the
test.  But the CT and MRI measure Damage down to Fractions of a millimeter
so *above, for you and her, is a Good sign in my opinion, since there's no
Physical Damage, bleeding etc. inside that might complicate things.
   I (personally) would be Far happier with that part so far, since (for
me) above clean tests mean her Brain is OK -- now 'we'  (Doctors and Neuros)
just have to find Another reason for the seizures.  /

**G -- unless you listed stuff here already (I'll look after I send this at
your other notes), did they look at e.g. how she sleeps at night?  other
symptoms she has or anything you'd notice?   I expect you watch her 'like a
hawk'  so you'd know if anything Else might be a symptom, so I wondered if
any other things come to mind that you didn't include earlier.      How did
you (anyone) first know she was having Seizures ??  e.g.   what types of
things did she do then, and now?  at that young an age so you can tell she's
Having a seizure?    I just wondered since someone so young can't tell you
(yet)  if she's feeling ill or  smells eggs or tastes lemon  (Aura signs of
some of the seizure types we Adults might have) ,    so I just wondered what
she was doing that made you and the Doctors aware she was having seizures??
I also don't know anything about e.g. Allergies and Seizures and if any
might exist -- again those would have to come from Child or Adult records,
since she wouldn't be able to tell you at her age if she was having a
reaction unless it were visible to you.
   Stick around,  someone else might have some ideas too.   Some people
only read the group once or twice a week, so you might get other ideas on
above post over next 3-5 days, as well as other websites others might have
found specific to Children with Epilepsy.   If you're near a Large City they
might also have a website, separate from efa.org.  The Toronto Canada office
has one, although most of it here (I think) are oriented toward Children
over 6 to Adults who have seizures.   Some offices or hospitals might have
Support Groups for Parent of Kids with seizures.  G./

(snip)

Cynthia,
Our two sons have seizure disorder, one diagnosed at age 18 and the other at
age 28. In each case the doctors did multiple tests to rule out tumors or
other nasty problems which might have caused the seizures. So like Delilah,
the glass is half full. Also, in both cases their seizures were controlled
with the first medicine that was tried.

We were told neither son has the kind of seizure that tends to run in
families. What we have learned is that in *most* cases you never learn the
cause of the disorder. Idiopathic means "Darned if I know."

Delilah is lucky to have such involved caring parents. My best to you.

Anna

Please make sure your daughterr get a PET scan.  My little girl went 4 years
before she finally got a PET scan.  The scan showed a Focal located in her
frontal lobe.  I was removed 4 weeks later and her seizures have been
resolved.

Acta Med Okayama. 2004 Jun;58(3):111-8. Related Articles, Links  

Natural antioxidants may prevent posttraumatic epilepsy: a proposal based on
experimental animal studies.

Mori A, Yokoi I, Noda Y, Willmore LJ.

Okayama University, Okayama 700 8558, Japan. dr-mori@f3.dion.ne.jp

Head injury or hemorrhagic cortical infarction results in extravasation of
blood and breakdown of red blood cells and hemoglobin. Iron liberated from
hemoglobin, and hemoglobin itself, are associated with the generation of
reactive oxygen species (ROS) and reactive nitrogen species (RNS). ROS and RNS
have been demonstrated to be involved in the mechanism of seizures induced by
iron ions in the rat brain, an experimental animal model for posttraumatic
epilepsy (PTE). ROS are responsible for the induction for peroxidation of
neural lipids, i.e., an injury of neuronal membranes, and also could induce
disorders in the excitatory and inhibitory neurotransmitters. Antioxidants,
such as a phosphate diester of vitamin E and C (EPC-K1) and antiepileptic
zonisamide, have been known to prevent the epileptogenic focus formation, or to
attenuate seizure activities in the iron-injected rat brain. Natural
antioxidants, such as alpha-tocopherol, and condensed tannins, including
(-)-epigallocatechin and (-)-epigallocatechin-3-O-gallate, adenosine and its
derivative, melatonin, uyaku (Lindera Strychnifolia), fermented papaya
preparations, Gastrodia elata BI., and Guilingji, have been demonstrated to
scavenge ROS and/or RNS and to be prophylactic for the occurrence of epileptic
discharge in the iron-injected rat brain.

PMID: 15471432 [PubMed - in process]

--------------------------------------------------------------------------
------

Who loves ya.
Tom

Hi everyone,

So we're home from a two night stay at the hospital.  Delilah had her
6th seizure on Thursday morning shortly after her appt with the ped.
neuro.  We had our 3rd ambulance ride to date after administering 7.5
mg of Diastat (rectal valium).  The neuros decided to  switch from
Tegretol to Phenobarbital.  So she was loaded up Thursday night.

It stands to mention that I sort of knew she was going to have a
seizure Thursday.  She woke up that morning and her head and eyes kept
twitching upward, sort of like raising your eyebrows but also cocking
your head up quickly at the same time.  I kept watching her sort of
waiting for it to happen.  We got home from our appt and she was
standing by her toy box.  I happened to look away (of course!) and
then I heard a thud, she had fallen and when I got to her, her head
was jerking back.  She was staring at me and watching me move toys
away from her.  Her right hand started to jerk, sort of like a waving
action of the fingers.  It took a little while for it to progress to
her entire body but it did.  It lasted about 7 minutes in total.

So now we are home, figuring out how to give her 12.5 ml (one time per
day) of the phenobarb.  It tastes pretty nasty and it is hard to
disguise.  We tried it straight up, with pears, apple raspberry sauce
and with plain goats milk yogurt.  The yogurt seems to suit her better
than the other options. Also splitting it into 2 doses per day.

Does anyone know any side effects to phenobarb?  I want to keep my eye
out for any while she is on this, so far I've noticed that she is very
hyper.  Today she was awake for 6 hours straight with no nap.  It is
hard to calm an 8 month old down.   The other side is that when she
falls asleep, she is OUT.  She is also bumping her head alot and
appears wobbly.

As far as her diagnosis, the neuro believes that she will not outgrow
this.  Something very difficult for us to accept.  Her neuro has
agreed to run some of the tests that I had been requesting (metabolic
and chemical, as well as celiac/gluten etc.)  We have a lab date on
Tuesday.   They will also be reviewing her MRI again and scheduling a
24 hour EEG.

So there it is..  As I type Delilah is asleep on my chest in her
sling.  The best feeling in the world.

Cynthia & Delilah