Joined: 18 Jun 2004 Posts: 10 Location: Dayton, Oh
My Daughter Posted: 06-18-04 01:46am
Hi I am new here and my daughter is almost
8 years old. She was diagnosed with
epilepsy at age 5 but believed she has had
it all her life. We have finally found a
wonderful doctor that we all love and we
are testing her to see if she is a
canadite for epilepsy surgery. But in the
mean time seizures are still uncontrolled
by medications. She has been on tegretol,
keppra, depakote, neurontin, and is
currently on lamictal, trileptal, and
diastat. We are going to start weaning
her off of lamictal tomorrow morning. And
her doc wants me to consider felbatol, I
have been researching this and I just dont
know about it. Does anyone have any
suggestions if so please help! Thank you
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sami_1982
Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003 Posts: 200 Location: Australia
Hello Posted: 06-18-04 10:27am
Hi
sorry to hear that you are going through
such a tough time.
I dont know what it is like to be a mother
and go through what you are, but have you
seen a movie called " first do no
harm".....It has meryl streep in it.
I would strongly concider that you watch
it and then you look closley at the
options that you have. 7 months ago I was
diagnosed with epilepsyand I was very bad.
Then all of a sudden my medication began
to work. Try the ketatonic diet. If you
have already tried it then I guess the
surgery is your last option. Just such a
tiny person, going through all that and
you aswell as her mother.
I just suggest watch that movie and
god bless to you I pray for you.
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mrsmikki25
New User, Becoming EHEALTHy
Joined: 18 Jun 2004 Posts: 10 Location: Dayton, Oh
Thank You Posted: 06-20-04 22:03pm
Yes I have seen the movie and I think the
diet is a wonderful thing and I am so
gratful that it is out there and is a
choice for alot of parents! My daughter
is the pickiest eater in the world!!!!
She has a gag reflex also so when she
doesnt like something she throws up very
easily and she likes nothing on the
diet... And I have discussed this with
her and she would rather deal with
seizures than to eat the foods crazy huh!
I personally think that I would rather eat
food I dont like than have seizures but I
guess I cant say since I have never
experienced it before. I would give
anything to understand what it is like for
her. With her being so young she doesnt
describe her auras or seizures very well.
It has gotton better as she gets older
though. I am sorry I am just babbling
thank you for replying and listening!
Mikki
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sami_1982
Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003 Posts: 200 Location: Australia
Posted: 06-21-04 01:03am
Dear mikki
you can talk to me about
anything. I will reply and I will listen
to you and answer your questions the best
that I can. I know that if I was your
daughter I would rather have the seizures
too then have brainsurgery. I wouldnt be
able to cope it just scares me too much.
You must be a strong parent and your
daughter must be a strong little girl.
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mrsmikki25
New User, Becoming EHEALTHy
Joined: 18 Jun 2004 Posts: 10 Location: Dayton, Oh
Posted: 06-21-04 17:05pm
Thank you so much! You replied to my
other post to. You seem like a very nice
person and I really appriciate you talking
to me. I have a hard time understanding
what my daughter is going through and you
and this forum have helped more than you
know. She is a very strong little girl
the side effects from the meds are hard to
deal with for her and myself... Shegets
so irritatated that I dont think she can
stand to be in her own skin! What meds
are you on? How old were you when you
were diagnosed? What type of seizures do
you have? Its nice to talk to someone who
knows what my daughter(her name is tj) is
dealing with.
Thank you
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sami_1982
Experienced User , Rather EHEALTHy
Joined: 13 Dec 2003 Posts: 200 Location: Australia
Hello Mikki And Tj Posted: 06-21-04 22:57pm
Hello there my name is samantha
i am 21 yrs old
i live in sydney australia
i was diagnosed with temporal lobe
epilepsy 8 months ago now
i am currently on epilim(sodium
valproate)ec 500mg tablets 2000 mg daily
and tegretol(cabramazapine)cr 200 mg
tablets 600 mg daily.
My seizures are mostly always tonic
clonic(grand mal) - full body convulsions
lasting 10-20 minutes.
And I have also had the odd petit
mal(absence seizure)
i have been told that my seizures fit into
the category of secondary genrelised tonic
clonic and simple partial seizures.
The neurologists also think that I have
some ? Pseudo fits. Wich are
psychogenic...Meaning non epileptic and
its not uncomon for epileptic to have
those esp in women they are more common.
I just try not to stress out too much and
hope for the best. :d
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SleepyJen
New User, Becoming EHEALTHy
Joined: 31 May 2004 Posts: 41 Location: NYC
Posted: 06-22-04 01:49am
Hi mikki,
what type of seizures does tj have? Do
they severely interfere with her life?
Is there a chance that she may grow out of
it? If there is, I wouldn't rush into
surgery. It's a big deal. But if she
can't live a "normal" life with the
seizures, then it may be a good idea. I
can identify with tj in that i'd also
rather have seizures that be on the
ketogenic diet! Here are my stats:
age 25.
Simple partial seizures started age 4.
Started seeing neurologist for migraines
age 5.
Complex partial seizures started age 13.
Grand mal age 15.
Diagnosed with epilepsy age 15.
Finally found a good doctor age 17.
Exhausted all meds, had 3-stage surgery
age 20.
Since then on depakote, diamox, and
lamictal.
The surgery helped tremendously, but
simple partials recently returned and I
can't seem to get them back under
control.
I wish you both the best. I'm also here
to try to answer any questions. Maybe I
can help give you tj's point of view since
I was young when mine started.
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