Hi Everyone, My Name is Leah. I have been diagnosed with with epilepsy since
2002. I developed Intractable Epilepsy from a Car accident in 1997. I suffer
from Complex Partial Seizures with the occasional Grand Mal.  In October 2008 I
underwent a Right Temporal Lobectomy at Legacy Good Samaritan Hospital in
Portland, OR. And Since that time I have had 9 seizures. I don't think I would
change my mind about surgery or go back on my decision to have the surgery for
anything in the world. It was the best thing I could have ever done. I am still
on the same medication I was on before Surgery with a little increase in
dosages.
   The Reason I joined this group  is so that I could meet other people in the
area with Epilepsy. I live in a Small town and there is no support group here
for people with Epilepsy.

Leah

Hi, We had the same problem with Keppra. My son has Myoclonic seazures and first
meds they pot him on was Keppra, he got worse, like you said his seazures
increased and they were deffinitly stronger, so we put him on Topomax wich made
him extremilly sleepy, he was sleeping 18 out of 24hrs:( Now he is on Depakote,
his seazures have decreased from 10 per day to 5, but they are still long and
strong. As far as I know any AED drugs  can increase seazures and make them
worse which means that those meds do not work for your little one:)
Good luck!!

- In Cent_Wa_Epilepsy_Support@yahoogroups.com, "marciadetert" <marciadetert@...>
wrote:
>
>
> --- In Cent_Wa_Epilepsy_Support@yahoogroups.com, lisa kline
> <lisakline11@> wrote:
> >
> > Hi
> > My son just started Keppra, his first meds after being diagnosed with
> complex partial seizures. He is 9. It seems to me that his seizures are
> increasing and getting stronger and longer now that he is on meds. Of
> course I could be wrong, just noticing them more that we have a
> diagnosis. Does any one out there have any info on whether meds can
> increase seizure activity? Thanks, Lisa
> >
> > --- On Sat, 5/23/09, Maraika maraika@ wrote:
> >
> > From: Maraika maraika@
> > Subject: [Cent_Wa_Epilepsy_Support] Cari - Re: Doctor referral?
> Vitamins?
> > To: Cent_Wa_Epilepsy_Support@yahoogroups.com
> > Date: Saturday, May 23, 2009, 4:15 AM
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > Hi Cari. I would love to see the file
> > you downloaded on Vitamins and Seizures. Could you give me the link
> too please.
> >  This subject is a speciality of mine and have posted some info on
> my website
> > that gives some insight into why nutrition is an important health care
> issue.
> > If you have any questions about anything you read on the document and
> just need
> > some clarification please feel free to ask me and I will do my best to
> give you
> > an answer or the links that refer to research done on this subject.
> Regards
> >
> >   
> >
> >
> >
> > Maraika Mason
> >
> > FAX 03 54333904
> >
> > Mob: 0408037286
> >
> > Skype: maraikam
> >
> > Have a great day and keep smiling:)
> >
> >   
> >
> >
> >
> >   
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > Re: Doctor referral? Vitamins?
> >
> > Posted by:
> > "cari_foster96"
> >
> > Thu May 21, 2009
> > 8:11 am (PDT)
> >
> >
> >
> >
> >
> >
> >
> > Hi,
> >
> >
> >
> > I just uploaded a file called Epilepsy. It is a document sent to me
> from my
> > brother-in-law with interesting information about vitamins and
> seizures. Maybe
> > it will help.
> >
> >
> >
> > Cari
> >
>

I would like to share my Nanny that is a full time caregiver for my ten year old
with Epilepsy.  He goes to school but missed 40+ days and we never know if he
can go or not. She is nursing certified, calm and patient.  She plays a lot with
my son and helps him learn.  She also has good old fashion common sense. 
Nothing scares her or freaks her out-which has been the case with a few other
caregivers handling Tonic Clonics.  We live in the Rucker Hill, Port Gardner
area.  Please call if this sounds like a possible match 206-349-2090. Thanks,
Marcia

--- In Cent_Wa_Epilepsy_Support@yahoogroups.com, lisa kline
<lisakline11@...> wrote:
>
> Hi
> My son just started Keppra, his first meds after being diagnosed with
complex partial seizures. He is 9. It seems to me that his seizures are
increasing and getting stronger and longer now that he is on meds. Of
course I could be wrong, just noticing them more that we have a
diagnosis. Does any one out there have any info on whether meds can
increase seizure activity? Thanks, Lisa
>
> --- On Sat, 5/23/09, Maraika maraika@... wrote:
>
> From: Maraika maraika@...
> Subject: [Cent_Wa_Epilepsy_Support] Cari - Re: Doctor referral?
Vitamins?
> To: Cent_Wa_Epilepsy_Support@yahoogroups.com
> Date: Saturday, May 23, 2009, 4:15 AM
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> Hi Cari. I would love to see the file
> you downloaded on Vitamins and Seizures. Could you give me the link
too please.
>  This subject is a speciality of mine and have posted some info on
my website
> that gives some insight into why nutrition is an important health care
issue.
> If you have any questions about anything you read on the document and
just need
> some clarification please feel free to ask me and I will do my best to
give you
> an answer or the links that refer to research done on this subject.
Regards
>
>   
>
>
>
> Maraika Mason
>
> FAX 03 54333904
>
> Mob: 0408037286
>
> Skype: maraikam
>
> Have a great day and keep smiling:)
>
>   
>
>
>
>   
>
>
>
>
>
>
>
>
>
> Re: Doctor referral? Vitamins?
>
> Posted by:
> "cari_foster96"
>
> Thu May 21, 2009
> 8:11 am (PDT)
>
>
>
>
>
>
>
> Hi,
>
>
>
> I just uploaded a file called Epilepsy. It is a document sent to me
from my
> brother-in-law with interesting information about vitamins and
seizures. Maybe
> it will help.
>
>
>
> Cari
>

Does anybody have a toddler with myoclonic seazures that has controlled seazures
with medications and what are the medicatios he/she is taking?
I know that some medications that work for somebody will not work for everybody
but I'm just wondering??

Thanks

--- In Cent_Wa_Epilepsy_Support@yahoogroups.com, "wabookworm" <wabookworm@...>
wrote:
>
> I had my 6 month visit with Dr. Sloop on Friday, and I get to reduce down to
Trileptal ONCE a day.  That's down from 6 Keppra/day (3/3) and 6 Trileptal/day
(3000 mg total).   On Wednesday, I officially mark two and a half years without
a seizure OR an aura!!!
> I thought we needed some good news!
> m
>
  That is GREAT news!!! News like that make my day, then I know that one day my
son will be seazure free...ohh I dream about that day, it has been hard 4
months.
I am so happy for you:)))

That is great news! Good luck with your reduction schedule; take it slow so
your body can adjust gradually! Best wishes and I look forward to your post
a year from now when you report that you remain seizure free! :-)

Original Message:
-----------------
From: wabookworm wabookworm@...
Date: Mon, 22 Jun 2009 06:04:48 -0000
To: Cent_Wa_Epilepsy_Support@yahoogroups.com
Subject: [Cent_Wa_Epilepsy_Support] GOOD news!


I had my 6 month visit with Dr. Sloop on Friday, and I get to reduce down
to Trileptal ONCE a day.  That's down from 6 Keppra/day (3/3) and 6
Trileptal/day (3000 mg total).   On Wednesday, I officially mark two and a
half years without a seizure OR an aura!!!
I thought we needed some good news!
m



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I had my 6 month visit with Dr. Sloop on Friday, and I get to reduce down to
Trileptal ONCE a day.  That's down from 6 Keppra/day (3/3) and 6 Trileptal/day
(3000 mg total).   On Wednesday, I officially mark two and a half years without
a seizure OR an aura!!!
I thought we needed some good news!
m

Hi, my husband is 42 and has recently been diagnosed, 3 months ago.  We went to
the doctor with what was then a seizure a year.  I wasn't even willing to call
them that at the time!  And now, 2 years later we have a diagnosis and the
siezures have increased 3 a day!  We tried Lamictal but it had a terrible effect
on his disposition and temper and wasn't helping the siezures at all, so we
changed to Topamax but the seizures aren't any better and he is confused all the
time.  I have run out of ways to keep my 2 yr old out from under foot when Daddy
is sick and I am at witts end worriing about him and trying to keep them both
safe.

It seems so sudden like something must be causing it.  The doctor just
reccommended we do a VEEG?  I think.  This is all so new, Have any of you heard
of adult onset before?

Personally, I think if the side effects of a medication are causing that
much problem and the seizures aren't in any better control, it's time to try
something else!

You're seeing a pediatric seizure specialist, right????

Having seizures is tough enough, esp when he becomes an anathema to his
buddies because they're fearful.  *They* also need some counseling about
what they're witnessing.

Sherry

-----Original Message-----
From: Cent_Wa_Epilepsy_Support@yahoogroups.com
[mailto:Cent_Wa_Epilepsy_Support@yahoogroups.com] On Behalf Of Kelly
Sent: Sunday, June 14, 2009 9:59 PM
To: Cent_Wa_Epilepsy_Support@yahoogroups.com
Subject: [Cent_Wa_Epilepsy_Support] behavior issues

I live in Portland and am new to this group.  My 5 year old son just started
having seizures 3 weeks ago.  He is now on 3 meds and still having seizures
plus the awful side effects of the meds.  We have been to the hospital 4
times, I have called his neurologist about daily and we will see her again
tomorrow.  My question is how do you deal with the side effects of the meds?
He was on Keppra for 2 days and was out of control.  He is now on
Tripelptil, Dilantin and Tranxene and out of control. My son is a completely
different kid, it is beyond sad and so disturbing.  I am trying to find a
good child and family psychologist.  We all need help desperately!!!
Thank you,
Kelly

Hi Kelly,

I'm so glad you posted. My 13 year old son was 6 when he started taking
anti-seizure meds, and I remember all the unanswered questions and
frustrations with medications. It's so hard to understand why one drug will
work for one child, but be disastrous for another. It can be an emotional
roller coaster for sure when trying to figure out what drug will be your
best bet.

I'm familiar with some of the meds you've mentioned. Keppra was a horrible
nightmare for us. My son was on it for a few months, and his personality
completely changed. It was awful. I have two friends whose sons also were
on Keppra with equally bad results. Plus, it didn't help with the seizure
activity.

Next, my son continues to take Trileptal. That's the drug that provides us
the best seizure control, but the side effects we have are opposite of
yours. My son felt drowsy when he first started taking it. It also causes
stomach upset. Because of it's effectiveness with his seizures, we continue
to use it. I should point out that we use the name brand drug Trileptal. We
tried the generic version and it didn't work, as was proven via a blood
test. My son actually takes two drugs daily, Trileptal and Neurontin. Plus
he has a VNS. Those three things have really made a difference for us.

We have used Tranxene as an emergency medication. There was a period when
we saw a neurologist who had him taking it as a daily med. Usually, it's
not used that way. It has a very short life in the system which is why it's
effective as an emergency med. It is known for its extreme sedative
effects. My son looked and acted very lethargic when on this drug. Sounds
like that's not happening in your son's situation. When we switched
neurologists and started seeing Dr. Colin Roberts at OHSU/Doernbecher(LOVE
him and his nurse), he changed his meds to not only improve his seizure
control, but also his quality of life. We still keep some on hand just in
case we need an emergency med, along with some Ativan.

I'm not familiar with the other med you mentioned. At one point, it was
explained to me that some of the drugs suppress impulse control. Perhaps
that's what's happening here. Also, just like some over the counter meds, a
drug could either sedate or cause hyper activity in children.

The best suggestion I have for you is to make sure that you and your
pediatric neurologist are on the same page.

You'll find lots of encouragement and cyber hugs on this board.

Best wishes,
Paula


Original Message:
-----------------
From: Kelly kellybpdx@...
Date: Mon, 15 Jun 2009 04:59:25 -0000
To: Cent_Wa_Epilepsy_Support@yahoogroups.com
Subject: [Cent_Wa_Epilepsy_Support] behavior issues


I live in Portland and am new to this group.  My 5 year old son just
started having seizures 3 weeks ago.  He is now on 3 meds and still having
seizures plus the awful side effects of the meds.  We have been to the
hospital 4 times, I have called his neurologist about daily and we will see
her again tomorrow.  My question is how do you deal with the side effects
of the meds?  He was on Keppra for 2 days and was out of control.  He is
now on Tripelptil, Dilantin and Tranxene and out of control. My son is a
completely different kid, it is beyond sad and so disturbing.  I am trying
to find a good child and family psychologist.  We all need help
desperately!!!
Thank you,
Kelly



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I live in Portland and am new to this group.  My 5 year old son just started
having seizures 3 weeks ago.  He is now on 3 meds and still having seizures plus
the awful side effects of the meds.  We have been to the hospital 4 times, I
have called his neurologist about daily and we will see her again tomorrow.  My
question is how do you deal with the side effects of the meds?  He was on Keppra
for 2 days and was out of control.  He is now on Tripelptil, Dilantin and
Tranxene and out of control. My son is a completely different kid, it is beyond
sad and so disturbing.  I am trying to find a good child and family
psychologist.  We all need help desperately!!!
Thank you,
Kelly

Mari,

A loud assent to everything you wrote!  Lars has seen Dr. Holmes since 2002.
His seizures have been *very* difficult to treat and finally after several
med changes and a VNS placement, he's at the point now where they're a lot
less frequent and much milder, although we think that the times his brain is
fuzzy he's really having seizures.  But it's better than 3-4 grand mals a
day along with strong complex partials.

What impresses me about the Regional Epilepsy Center isn't just the vast
wealth of knowledge the docs have there (many of them also teach and
research) but their wonderful compassion and caring for their patients.
Even when we've seen or spoke with an associate (Dr. Wilensky, Dr. Miller
and Dr. Fraser), we've felt real concern from them - we've never felt
rushed.

I know Dr. Holmes will do *anything* to help his patients out even with
daily activities. He's written letters to help Lars get the community
services he's needed.  His staff is always available to answer questions -
they're wonderful!

A link directly to the Regional Epilepsy Center website is
http://uwmedicine.washington.edu/PatientCare/LOC/RegionalEpilepsyCenter/inde
x.htm

Sherry


---Original message---
From: Mari S
Sent: Saturday, June 13, 2009 9:31 PM

Before I forget, here's an address those on the list from the Pac NW
Washington/Oregon/Idaho) might be interested
in: http://uwmedicine.washington.edu/PatientCare/MedicalSpecialties/Specialt
yCare/HARBORVIEW/Epilepsy/index.htm
It's the address for the Harborview Epilepsy Clinic.    I'm just now getting
out of school for the summer (still have to shut the room down, but...), and
catching up on the mail.   

I have nothing but the highest praise for the Harborview/UW clinic -- and
Dr. Holmes et al!  Two weeks from tomorrow will mark two and one half years
seizure free.  (Granted, it took brain surgery to get there!)  I had had
nothing but clean EEG's for 34 (yes, thirty four) years -- no activity, no
irregularity -- until I went to the Harborview clinic for a three-day VEEG,
which finally caught several seizures.  Finally, I had undeniable proof.
 I'd had a neurologist in Spokane yank (not wean) me off all meds about 14
years ago, telling me I had low blood sugar, not epilepsy, since my EEG's
were always clean.  Unbeknownst to me, I was having seizures (simple and
complex partial) during that time -- and I was driving.   

With that proof, Dr. Holmes recommended me for surgery (right temporal lobe
resection), and it has been highly successful.  I'd been weaned off three
times before -- right before college, right before I got married, and when
we were trying to get pregnant.  None were, I'm sorry to say, successful.  
I'm currently being weaned again, but this time, I have a clean MRI and
absolutely no seizure activity (since the source spot is gone).   

The docs at Harborview know their stuff: Dr. Silbergeld (who did my surgery)
edited a textbook with the other docs contributing about epilepsy surgery.  

Sherry, about postical weird behavior:  I used to go root out food or, more
in the later years, something to drink.  "Okay, honey, Okay honey, okay
honey" was a common "clue phrase" to my husband.  Or, when I "had low blood
sugar," I would cough till my throat was raw, then I'd drink a lot of water
(out of the water bottle that was always with me), and when I was back to
"normal," I'd see this huge drop in the level in the bottle, and it was like
I'd left clues for myself that "it" (we weren't sure what) had happened.  

Take care all, 
Mari

--- In Cent_Wa_Epilepsy_Support@yahoogroups.com, "kanani_vl" <kanani_vl@...>
wrote:
>
> I am new to this forum. My 12 year old step-daughter was recently diagnosed
with Epilepsy. In the last 2 months she has has had 6 generalized seizures. She
is a very active, driven, and fun-loving 12 year old girl. Some of that we have
seen 'dulled' with medication. She is currently on Keppra, but the neurologist
wants to switch her to Topomax (within 2 days of starting Keppra, she became
very moody, silent and even angry).
>
> So I have 2 questions for the 'peanut gallery';
>
> 1 - Anyone on Topomax? And if so, what do you think about it?
>
> 2 - Does anyone know of a 'support group' for kids within the greater Seattle
area?
>
> Thanks!
>
Hi, and welcome. My son has Generalized Myoclonic seazures and he was first put
on Keppra. We had the same problems on it as you do, so we put him on Topomax
and started gradually taking out Keppra..he got a little bit better, he wasn't
angry or moody but he slept 18 out of 24hrs..Topomax made him extremily
tired..so we took him off, but as you probably already know, what doesn't work
for one person doesn't meat that it won't work for somebody else. Good luck:))
> Kanani
>

--- In Cent_Wa_Epilepsy_Support@yahoogroups.com, barbie kaneaster <bkk1073@...>
wrote:
>
> i was seizer free for eight years  i was even able to get my licences  but i
am currenttly back on my med and have been seziure free for 8 months  so it
does happen
>
> --- On Wed, 6/10/09, paula@... <Paula@...> wrote:
>
>
> From: paula@... <Paula@...>
> Subject: RE: [Cent_Wa_Epilepsy_Support] Myoclonic seazures
> To: Cent_Wa_Epilepsy_Support@yahoogroups.com
> Date: Wednesday, June 10, 2009, 1:14 PM
>
>
> Great!! That is all I wonted to hear. My son is on meds over 3 months now, and
non of them seem to work. It is so good to hear that one day, and hopefully
soon, he will wake up and not have seazure.
Thank you all!!!:))
>
>
>
>
>
> Oh, one more thing I forgot to mention. When we first weaned him
> completely off the meds, he was okay for something like 2 months and then
> they came back with fierce intensity. The second time, we didn't even
> complete the weaning process before the seizures resumed.
>
> Paula
>
> Original Message:
> ------------ -----
> From: minelamujdza minelamujdza@ yahoo.com
> Date: Wed, 10 Jun 2009 18:20:43 -0000
> To: Cent_Wa_Epilepsy_ Support@yahoogro ups.com
> Subject: [Cent_Wa_Epilepsy_ Support] Myoclonic seazures
>
> I talk to a lot of peope about seazures and I can't help but wonder.. Is
> there anybody that was seazure free for 2 or more years and is taken off of
> the medications?
> My doctor keeps saying that my son needs to be seazure free for 2 years and
> have another EEG that doesn't show abnormal activity in the brain so he can
> be taken off the meds.
> I just need to hear that there is somebody out there that has experienced
> this miracle, because all I hear is "hit and miss" with medications. .is
> there a good news?
>
>
> ------------ --------- --------- --------- --------- --------- -
> mail2web.com â€" What can On Demand Business Solutions do for you?
> http://link. mail2web. com/Business/ SharePoint
>

Oh, one more thing I forgot to mention.  When we first weaned him
completely off the meds, he was okay for something like 2 months and then
they came back with fierce intensity. The second time, we didn't even
complete the weaning process before the seizures resumed.

Paula

Original Message:
-----------------
From: minelamujdza minelamujdza@...
Date: Wed, 10 Jun 2009 18:20:43 -0000
To: Cent_Wa_Epilepsy_Support@yahoogroups.com
Subject: [Cent_Wa_Epilepsy_Support] Myoclonic seazures


I talk to a lot of peope about seazures and I can't help but wonder.. Is
there anybody that was seazure free for 2 or more years and is taken off of
the medications?
My doctor keeps saying that my son needs to be seazure free for 2 years and
have another EEG that doesn't show abnormal activity in the brain so he can
be taken off the meds.
I just need to hear that there is somebody out there that has experienced
this miracle, because all I hear is "hit and miss" with medications..is
there a good news?




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Hope is an important part of this, isn't it?  In our case, so far, we've
not experienced success off of medications. Our 13 year old son was
completely weaned after being seizure free for 1 year and then again
partially weaned at another time, only to have the seizures return with
even greater intensity. We have no plans to try to wean him again.

In hind sight, I can see a bit of a pattern regarding seizure activity with
increases surrounding growth spurts between the ages of 6 - 10, and then
from 11 - 13 with the onset of puberty. He was in that first age set when
we first tried to wean him, and perhaps the association of his seizures
coupled with his growth cycle disallowed success.

Each case is so unique, that it's hard to predict what could happen. Even
so, I never give up hope that one day he will not only be seizure free, but
also med free. Evey day without a seizure is a cause for celebration; for
us that means meds + VNS. I know that it's those two things that are
keeping the seizures at bay ... without them, the seizures would return.

I hope someone can share a more positive weaning experience with you!

Best wishes,
Paula


Original Message:
-----------------
From: minelamujdza minelamujdza@...
Date: Wed, 10 Jun 2009 18:20:43 -0000
To: Cent_Wa_Epilepsy_Support@yahoogroups.com
Subject: [Cent_Wa_Epilepsy_Support] Myoclonic seazures


I talk to a lot of peope about seazures and I can't help but wonder.. Is
there anybody that was seazure free for 2 or more years and is taken off of
the medications?
My doctor keeps saying that my son needs to be seazure free for 2 years and
have another EEG that doesn't show abnormal activity in the brain so he can
be taken off the meds.
I just need to hear that there is somebody out there that has experienced
this miracle, because all I hear is "hit and miss" with medications..is
there a good news?




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I talk to a lot of peope about seazures and I can't help but wonder.. Is there
anybody that was seazure free for 2 or more years and is taken off of the
medications?
My doctor keeps saying that my son needs to be seazure free for 2 years and have
another EEG that doesn't show abnormal activity in the brain so he can be taken
off the meds.
I just need to hear that there is somebody out there that has experienced this
miracle, because all I hear is "hit and miss" with medications..is there a good
news?

Oh, he's a little guy!!! I just love that age group! Age three is such a
time of wonder and discovery, I'm glad that his current meds don't sedate
him like the other meds do. How awesome that he takes pills! That will make
things much easier in terms of medication choices. Instead of taking
multiple pills at a time, can your doctor prescribe the larger dose to be
taken with a stronger dose pill?  We've done that over the years with much
success.

I'm not a fan of Keppra, although many do like it. My son was 11 years old,
I think, when he was on it, and it was a nightmare. My normally happy,
positive minded son turned into a moody, depressed kid. I was sooooo glad
to get rid of that one. Again, some drugs work great for some kids, and not
so much for others.

Best wishes,
Paula

Original Message:
-----------------
From: minelamujdza minelamujdza@...
Date: Tue, 09 Jun 2009 19:54:29 -0000
To: Cent_Wa_Epilepsy_Support@yahoogroups.com
Subject: [Cent_Wa_Epilepsy_Support] Myoclonic seazure


My son turned 3 in March this year, he doesn't have any side efects on
Depakote what so ever, in fact as soon as he started taking depakote by
itselfe about a month ago he went back to being very alert and just happy.
When he was on Topomax and Keppra he was just very sad and tired all the
time, he would even fall asleep after every seazure. I am just very
irritaded because I can't belive that it takes this long to find the right
meds and from what I heard it can eaven take longer. He had less seazures
on keppra and topomax but as I said he was sad and tired and nowhe has more
seazures on Depakot and very happy and alert.
We saw his Neurologist yesterday and he wonts to add one more 125mg Depakot
on top of the 3 he already takes daly, it just seems like a  lot of pills
for that little 3 year old. I pray every day for all the kid and parent
that have to deal with this!!



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My son turned 3 in March this year, he doesn't have any side efects on Depakote
what so ever, in fact as soon as he started taking depakote by itselfe about a
month ago he went back to being very alert and just happy. When he was on
Topomax and Keppra he was just very sad and tired all the time, he would even
fall asleep after every seazure. I am just very irritaded because I can't belive
that it takes this long to find the right meds and from what I heard it can
eaven take longer. He had less seazures on keppra and topomax but as I said he
was sad and tired and nowhe has more seazures on Depakot and very happy and
alert.
We saw his Neurologist yesterday and he wonts to add one more 125mg Depakot on
top of the 3 he already takes daly, it just seems like a  lot of pills for that
little 3 year old. I pray every day for all the kid and parent that have to deal
with this!!

Welcome to this group! I hope you get the answers to your questions. How
old is your son? You mentioned that he was diagnosed 4 mos. ago. Is this is
first diagnosis for seizures? The reason I ask is that one of the toughest
things for many parents, myself included, when trying to figure out how to
manage our children's seizures is that each situation, even with the same
diagnosis, is unique. Thus, a drug that works wonders for some kids may not
help another at all. When my son was first diagnosed, we were cautioned
that drugs that treat epilepsy may not "kick in" for several weeks,
especially when you factor in the weaning time off of one drug and onto
another. Sometimes the drugs do take effect and you notice an immediate
improvement (love those times!); other times there is no improvement or
even a backwards slide.

Did your son's Neurologist give you a time line regarding when the drug
should take effect? I'm assuming he had you wean your guy off of the first
drugs slowly. How long has he just been only on Depakote? We haven't used
Depakote; perhaps someone with experience with it will be able to share if
they had immediate improvement or if it took a while to take effect.

Many of us on this board have children who use a "cocktail" of meds to
manage our kids' seizures. It's a heartrenching, emotional yo-yo working
through the medication fine tuning. Please know that you are not alone!

Sending hugs your way,
Paula


--- In Cent_Wa_Epilepsy_Support@yahoogroups.com, "minelamujdza"
<minelamujdza@...> wrote:
>
> Hi Everybody,
>
> My son was diagnosed with Myoclonic seazure desorder almost 4 months ago,
he's been on Keppra and Topomax..right now he is on Depakote, nothing seems
to be helping. There is not much that you can read online about Myoclonic
seazures, so I am wondering if anybody has any info. on this type of
seazure to share with me?
>
> Thanks
>




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HI:

My daughter was diagnosed with a seizure disorder at 4 1/2 months old.  She's
been on all of those meds, with no success.  I'm not telling you this to
discourage you, I just want you to be aware.  There's one thing I really would
like to mention to you......When she was 2 years old, we switch her to the
Depakote and that's when she had a pro-longed seizure that lasted for more than
2 hours and now she has severe brain damage and is totally disabled.  I have
read, on the prescription warnings, that Depakote can cause pro-longed seizures.
I've also heard of kids on Depakote that have had bad experiences with stomach
problems.  Again, my intentions are not to frighten you.......I don't know how
old your son is, but Claire's doctor told me they don't usually put kids under
two years old on Depakote.

My thoughts and prayers are with you.

God Bless!!
In Jesus' Name,
Diana

--- In Cent_Wa_Epilepsy_Support@yahoogroups.com, "minelamujdza"
<minelamujdza@...> wrote:
>
> Hi Everybody,
>
> My son was diagnosed with Myoclonic seazure desorder almost 4 months ago, he's
been on Keppra and Topomax..right now he is on Depakote, nothing seems to be
helping. There is not much that you can read online about Myoclonic seazures, so
I am wondering if anybody has any info. on this type of seazure to share with
me?
>
> Thanks
>

Hi Everybody,

My son was diagnosed with Myoclonic seazure desorder almost 4 months ago, he's
been on Keppra and Topomax..right now he is on Depakote, nothing seems to be
helping. There is not much that you can read online about Myoclonic seazures, so
I am wondering if anybody has any info. on this type of seazure to share with
me?

Thanks

Hello,
First of all WELCOME Kelly! :) This is the nicest group you hope to never have
to meet. lol I think I pretty much speak for everyone on here when I say your
fears and feeling overwhelmed are something we have all been through so it is
very important for you to realize your not alone. My son did not start having
seizures until he was five either. So when he just up and started having them
out of the blue it was very scary. Especially when every time I took him to the
hospital I would hear "oh don't  worry he is fine now he will probably never
have another one" and then they would pat me on the head and send me home like I
was some neurotic Mom. lol Finally after his first Grand Mal which lasted 45
minutes, they tried to laugh it off because his Cat Scan was normal (Me being
Mom was ust sure he had a tumor or some other weird never before seen disease
lol) they again tried to send me on my way but this time I demanded to see a
pediatric neuro and informed them that I was not leaving until we did. That was
when we got the diagnosis.

Who is your neurologist? What is your son taking for his meds? My best advice is
to come here a lot, and even to our meetings where you can hear other parents
stories. It has helped me a lot. It really helps to know that other parents have
been there. I know that if I have ever had a question regarding meds or anything
else I come to this board first and ask and usually have some sort of response
fairly quickly.

The only thing you can do is take it one day at a time. Maybe see if you can get
signed up for some in home nurse care to help? I don't know if you have a
diagnosis yet you must if he is on meds. you can check with DDD the dept of
developmental disabilities...his seizures alone should qualify you for that.
Then at least you can have some help. How frequent are his seizures? Never be
afraid to ask questions. I called my son's neuro's nurse so many times that
first year and she was great she never made me feel dumb for asking questions.
:) If in doubt always call your neurologist office.

Ok hope this helps I am sure others on her will have great advice for you too!

Jenna
--- In Cent_Wa_Epilepsy_Support@yahoogroups.com, "Kelly" <kellybpdx@...> wrote:
>
> Hi,
> My 5 year old son just started having seizures 2 weeks ago.  He has several a
day and has been to the hospital 4 times this week.  He is on meds but they
don't seem to be helping...yet.  We were informed that these left frontal local
motor seizures may be hard to control and if we are lucky enough to control with
meds, it may take several months or longer.  In the meantime, what the heck do
we do?  We feel so helpless.  We have to watch him nonstop.  We had to pull him
out of preschool, we both work (I am self-employed so can can now work while my
husband is home) and are expecting twins in Sept.  We are so overwhelmed and
scared.  We are trying to take one day at a time but thought I would get some
advice/resources.  Thank you. Kelly
>