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Medical Forum / Diseases and Disorders / Epilepsy / September 2003

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Daughter has Absence Seizures

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Zeeke - 25 Sep 2003 19:53 GMT
Good Afternoon All,

We just came from the Pediatric Neurologist and he informed us my 5 year old
daughter has Primary Generalized Seizures (Absence Seizures).

Now a couple questions for the group:

He wants to put her on Lamictal.  Starting on a very low dose and working up
to 75mg after 6 weeks and then reevaluating.  Any comments/concerns on
Lamictal?  I have researched and know some of the possible side
effects(rashes, allergic reaction,Stevens-Johnson Syndrome (SJS)) .  The Doc
likes this med because of the low instances of side effects.

How do you discuss Absence Seizures with a 5 year old little girl who really
doesn't even realize when she has a seizure?  In her mind there is no break
in activity it is only obvious when watching her.

Thanks to all of you that have helped us through this.  Looks like we will
be regulars here for a while :-)

Zeeke & Family
Pablo - 25 Sep 2003 20:58 GMT
g'day zeeke,
i've not had any problems while i've been on lamictal. i've had no
side-effects that i've noticed and it has given me good control ( i do take
tegretol with it). but don't forget that everyone's different and so what's
good for me may not be good for your daughter.
pablo
> Good Afternoon All,
>
[quoted text clipped - 17 lines]
>
> Zeeke & Family
Cheryl DeVoll - 30 Sep 2003 06:26 GMT
I enjoy good seizure control, however, the cognitive side effects are
terrible for me. I've developed cognitive difficulties which include extreme
distractibility and memory deficits. They're hard to handle . I work double
time to overcome them.

Cheryl

> g'day zeeke,
> i've not had any problems while i've been on lamictal. i've had no
[quoted text clipped - 28 lines]
> >
> > Zeeke & Family
Dave ???? - 25 Sep 2003 21:20 GMT
Howdy Zeeke!

The big issue on Lamictal monotherapy (that I'm aware of) is the rash.

If he develops a rash, call the doctor - FAST!

Signature

Dave ????
"Noli illigitemi carborundum decendus"

http://www.howdydave.com

> Good Afternoon All,
>
[quoted text clipped - 17 lines]
>
> Zeeke & Family
Zeeke - 25 Sep 2003 21:48 GMT
Dave,

Thats exactly what the Doc said..he was very insistent.  He told us that a
rash could take 7 to 14 days to show BUT as soon as we see any rash we are
to get to his office immediatly.

How goes it with the VNS turned back on?  Hope it is working well for you
this time.

Zeeke
> Howdy Zeeke!
>
[quoted text clipped - 28 lines]
> >
> > Zeeke & Family
jedi and son - 25 Sep 2003 23:37 GMT
> Dave,
>
[quoted text clipped - 3 lines]
>
> Zeeke

Zeeke,

My son is on Topomax and Lamictal was added in June.  My son's Neuro uses an
extended ramp up period to being his med levels up even slower with
Lamictal.  She told me that she does that as she firmly believes that a slow
ramp up can mitigate the likelihood of the rash occurring.  I suspect that,
with monotherapy, your Neuro may be reluctant to slow the ramp up period
down in order to start getting effective levels in her blood a little
quicker.

My son also was diagnosed as being primary generalized however, he exhibited
3 different seizure forms:  Absence, Tonic Clonic and Atonic.  I am told
that Primary generalized can take on just about about form...just depends on
the individual.  I will tell you though, that my son's cognitive ability has
climbed INCREDIBLY with the Lamictal and we're very happy with the results
so far.  If this continues we'll probably look at reducing his Topomax
levels.

God Bless and best wishes

Jedi and Son
Dave ???? - 25 Sep 2003 23:57 GMT
> Dave,
>
> How goes it with the VNS turned back on?  Hope it is working well for you
> this time.
>
> Zeeke

Howdy Zeeke!

I'm getting an oh so subtle buzz for 30 seconds every 5 minutes.

I've had better sorts of buzzes on but, what the heck, at least I get this
one 24/7.

Signature

Dave ????
"Noli illigitemi carborundum decendus"

http://www.howdydave.com

CyberCafe - 26 Sep 2003 02:01 GMT
> Good Afternoon All,
>
[quoted text clipped - 12 lines]
> doesn't even realize when she has a seizure?  In her mind there is no break
> in activity it is only obvious when watching her.

Well, you are probably going to have to do this in steps.  You probably can
start with books (reading, coloring, etc) that are age-appropriate.  Then as she
gets older, you can add more age-appropriate information.  Of course, she is
much too young to understand all the medical stuff.  But she does need to know
that she has epilepsy and what type of epilepsy she has.   Maybe it would be a
good idea for her to know the name of her medication.

Barb

> Thanks to all of you that have helped us through this.  Looks like we will
> be regulars here for a while :-)
>
> Zeeke & Family
Dave ???? - 26 Sep 2003 03:09 GMT
Howdy Zeeke!

The first way that absance/complex partial seizures were explained to me
was:

"It's like a switch connecting you to your brain. Your brain is still
working, but when the switch gets turned off you don't know what is going on
until the switch is turned back on again."

That explination was given to me when I was 13 or so. I don't know if it
will work for a 5 year old.

Signature

Dave ????
"Noli illigitemi carborundum decendus"

http://www.howdydave.com

> Good Afternoon All,
>
[quoted text clipped - 17 lines]
>
> Zeeke & Family
Liz & Allan MacDonald - 26 Sep 2003 14:50 GMT
> Any comments/concerns on Lamictal?  

A data point:  On Lamictal I went from 2-3 absences daily to 12-14/day.
 I had very vivid dreams and once woke up crying from a dream.  If your
daughter's sleep seems unsettled, blame the med.
My experience was at least 5 years ago, but at that time my neuro did
not know that painfully swollen lymph nodes (lymphadenopathy) were a
symptom of a reaction to the medication.  I had no rash.
Liz
Cheryl DeVoll - 30 Sep 2003 06:22 GMT
Aha, now I've found this thread after I started a new one!  Here's the
Stevens Johnson support site, which is the deadly reaction to Lamictal and
other meds of all kinds.

http://www.sjsupport.org

Cheryl

> > Any comments/concerns on Lamictal?
>
[quoted text clipped - 5 lines]
> symptom of a reaction to the medication.  I had no rash.
> Liz

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