I'm 30 years old and i've had juevenile
myoclonic epilepsy since I was 17.
I got married 17 months ago so my husband
and I are planning to start a family soon.
I've recently been referred by my gp to
see a neurologist for pre-conception
counselling.
I'm currently on epilim chrono but the
neurologist has told me that this has more
of an increased risk of having a baby with
spina bifida than other anti-epileptic
drugs. Therefore, he wants me to transer
gradually over to keppra which he says is
considered to be a safer drug.
I was just wondering if anyone else has
had children whilst on antiepileptic drugs
- what did you take during pregnancy?
How was your pregnany monitored? Did you
find that being pregnant triggered of your
epilepsy? I have read that the change in
hormones can do that.
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Kathyalison
Experienced User , Rather EHEALTHy
Joined: 01 Apr 2004 Posts: 64
I'm In the Same Boat Posted: 04-02-04 01:49am
Hi!
I'm in the same boat as you in many ways!
I do have a child already although I am
hoping for another.
When I was pregnant with my daughter (who
is 23 months) I was on lamictal and had
been for 5 years. The drug had worked
well for me and was fabulous during my
pregnancy. I had the maternal serum
testing done to check for odds of spina
bifida etc. And my results came back that
my odds were considerably less than that
of an average 26 year old (my age at the
time). As well, on lamictal I was able
to breast feed which was very important to
me. Unfortunately I had to stop because
I developed a very serious case of
mateitis which lowered my seizure
threshold and I did end up having a
several seizures there after (my first in
16 months). However, I stayed on the
lamictal and my daughter is wonderful!
She reached a lot of her milestones
earlier than the average child and is a
talkitive bright little joy! Before I
was married my doctor put me on lamictal
partly because of it's considered safety
during pregnancy. It is realitively new,
and there are still a lot of studies being
done with it I think, but I can tell you
it was wonderful for me.
Now as I say, we're in the same boat, as
my doctor now wants to change my meds, to
include keppra because I have had some set
backs and he feels we need to try to get
on top of things. So he has been talking
about keppra. My husband and I have been
trying to concieve but have sadly put that
on hold because of all of this. I've
read about keppra and see a large list of
side effects and evidence of fetal
abnormalities in animals so I am
terrified! Because lamictal did work so
well for me, I really wanted to stay just
with that, however...... Do you know
anything more about keppra? I have read
that keppra is to be used only in
combination with other drugs. I haven't
talked to my doctor about that yet, but I
would mention it to your doctor if I were
you.
As I say, lamictal was wonderful for me.
In fact, i'd never felt better in my
life!! My pregnancy was closely
monitered but I always felt very
confident! Good luck let me know how
things go!
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bubble1
New User, Becoming EHEALTHy
Joined: 17 Jan 2004 Posts: 16
Pregnancy & Keppra Posted: 04-02-04 03:11am
Hi
thanks a lot for your reply. I think
you are right to be concerned about keppra
- when I researched it, I found on the
internet that the food & drug
adminstration advised that foetal
abnormalities had been found in animal
studies and keppra hadn't been researched
enough in human pregnanices. I've
decided not to be a guinea pig so i've
started to take topiramate. I've just
started a gradual transfer from the epilim
to topiramate.
I read lots about bad side effects of
keppra - mainly depression and mood
swings. When I expressed my concern to
my gp, he advised me that I could look on
the internet and type in any drug name and
would always come across stuff like that
but I kept coming across people saying
don't go on keppra because for the first 3
months you think it's a wonder drug and
then it affects your personality.
It will take me until end august to be
fully transferred onto topiramate so we
can start trying for a baby round that
time. If i'm successful in becoming
pregnant, i'm really worreid how I will
cope because tiredness is the main trigger
of my epilepsy. How did you find things
with your first baby.
Thanks for your reply and good luck to you
too!
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bubble1
New User, Becoming EHEALTHy
Joined: 17 Jan 2004 Posts: 16
Keppra & Pregnancy Again Posted: 04-02-04 03:21am
Hi - me again - below is the article I
read about foods & drugs
administration with regards to keppra and
epilepsy.
in the united states, the food and drug
administration (fda) assigns each
medication to a pregnancy category
according to whether it has been proven to
be harmful in pregnancy. Keppra is listed
in pregnancy category c. This indicates
that caution is advised, but the benefits
of the medicine may outweigh the potential
risks. Studies in animals have shown some
harm to the baby, but there haven't been
any good studies of results in women.
Talk to your doctor or another health
professional if you are pregnant or plan
to become pregnant. We don't yet have
enough information to be able to estimate
the risk of various types of birth defects
that might occur if keppra is taken during
pregnancy. We also don't know enough to
compare the risk with keppra to the risk
with other seizure medicines.
All women who are capable of becoming
pregnant should take at least 0.4 mg (400
mcg) of the vitamin called folic acid
every day because it helps to prevent one
type of birth defect. (the most
well-known of these is spina bifida, in
which the spinal cord is not completely
enclosed.) women at high risk, such as
those with a history of this kind of
defect in a previous pregnancy, should
take 4000 mcg (4 mg) daily, beginning
before they become pregnant.
How much keppra is passed through breast
milk is not known for certain, but the way
the body uses it suggests that probably a
large portion does enter the milk. If you
want to breastfeed your baby, check with
your doctor about what seizure medicine
would be best for you.
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Kathyalison
Experienced User , Rather EHEALTHy
Joined: 01 Apr 2004 Posts: 64
Pregnancy And Aeds Posted: 04-02-04 04:26am
Hi!
Thanks for the info. I've read a lot of
the same.
My pregnancy was wonderful. Like any
woman I was very tired during my first
trimester and this caused me some concern
as like you my seizures are triggered by
fatigue. However, I took good care of
myself and around the 13th week things
began to improve. The nausea had passed
and I was gaining energy. As i've said
to others, I never felt better than when I
was pregnant. I was totally energetic
and on cloud 9!!! The fatigue and
tiredness did affect me after my daughter
was born and I developed mateitis (an
infection of the breast from breast
feeding) which really impacted me though.
The infection got so bad that I needed
surgery (very rare!!) and this prompted a
seizure. I had been really worried about
handling labour because of course that is
an extremely exhausting and demanding
time. However, I had an epidural and
flew through, and had a wonderful birth
expereince! Because of the masteitis
stuff though I was unable to continue
breast feeding and this really impacted
me. I developed post-partum depression
in there (which we figured out several
months later) after a seizure took place.
This was oct 2002.
Due to this, my doctor has wanted to
change my meds for the last while, and is
now wanting to add keppra as I said.
But, with my history of depression (which
i'm sure had nothing to do with epilepsy
or the lamictal) i'm really worried about
that side effect of keppra. I'm
literally sitting by the phone right now
waiting for him to call. Not knowing is
the worst, and I so want another baby!!!
It's hard when your fate and that of your
family is in someone else's hands. Hang
in there! Your miracle will happen and I
pray mine will too.
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denenne
New User, Becoming EHEALTHy
Joined: 26 Jun 2004 Posts: 5 Location: portland or
Posted: 06-28-04 18:39pm
Hello,
i was reading and thought I would put in
my two cents. I have had seizures since
the age of 7 and have been on tegratol
until this last year when I changed to
trileptal. I have to children ages 8 and
5 and they are both very healthy. The
only issues that I would look for is in
labor you may have seizure if fatigue is
your trigger. Let your ob/gyn know and
they will be able to give you other meds
to calm you and they will let you sleep
good then induce your labor, also dont let
your body fool you after labor you have
not yet recovered from the fatigue and you
are not getting a lot of sleep anyway. I
never have grand mals unless I am asleep,
but after labor I have one when I was
driving with my kids in the car. Thank
god no one was hurt. Just take care of
yourself first and you will be fine.
