My 14 year old daughter has just been diagnosed as suffering from
epilepsy. She suffers from several petit mal absences in the weeks
prior to a tonic-clonic seizure. It has been recommended that she
start taking medication (sodium valproate). I am concerned about
possible side effects from taking this medication, and wondered
whether anybody has any experiences (either positive or negative) from
using this drug. I am particularly interested in any natural or
herbal alternatives, or complementary therapies that people may have
found effective.
Many thanks in anticipation of any help anybody can offer,
Tim
Pablo - 10 Jan 2004 00:41 GMT
G'day tim,
i took epilim (sodium valproate) for seventeen years before drug conflicts
caused it to lose its' effectiveness for me. i found that it was effective
for controlling tonic-clonic seizures but was less effective for controlling
complex partial and absence seizures. i found that it caused me to have a
voracious appetite so i gained lots of weight while taking it. i have a
cousin who took it for a while and she also suffered weight gain while using
it. i believe it shouldn't be taken during pregnancy, which shouldn't affect
your daughter at this stage but may be something to think about for the
future.
all this having been said it not necessarily likely that any of this may
affect your daughter as everyone reacts differently to medicines because no
one is the same. if i was you i'd talk to the neurologist about all the
alternatives available and the pros and cons of each. it is also a god idea
to keep a diary of all symptoms etc. that your daughter displays and write
down any questions you have for the doctor/neurologist so you don't forget
them during your appointment. good luck!
pablo
> My 14 year old daughter has just been diagnosed as suffering from
> epilepsy. She suffers from several petit mal absences in the weeks
[quoted text clipped - 9 lines]
>
> Tim
Tim - 13 Jan 2004 22:01 GMT
Pablo,
Thank you very much for your reply. We have started to keep a diary of
all symptoms as you suggested, and also a list of questions for our
appointment with the neurologist.
Would you mind us asking you how much weight you gained whilst taking
epilim, and did that last for whole time you were taking the tablets.
Did you lose the weight again once you stopped taking the tablets.
Obviously to a 14 year old teenage girl, that weight gain is a big
issue!
Many thanks again for your help,
Tim
Pablo - 14 Jan 2004 11:24 GMT
G'day tim,
unfortunately the weight gain was rather large, i'm afraid i can't give you
an exact figure, but after i stopped taking epilim i lost 42kg! the weight
gain was also starting to cause other health issues like sleep apnoea but
that stopped when the weight was shed. i found the weight gain was steady
throughout the time i took epilim. i'm currently using tegretol and lamictal
and together they have given me almost complete control of my seizures.
i'm glad you took my advice on the diary etc. i found it very helpful
especially when changing doctors and seeing specialists, it gives them a
headstart.
pablo
> Pablo,
>
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>
> Tim
Peter Beach - 12 Jan 2004 09:51 GMT
Hi Tim,
We have a 14 year-old daughter who was diagnosed with epilepsy about 18
months ago. Initially she was treated with Epilim (sodium valporate).
Epilim is a widely used anti-epilepsy drug, it is often effective and is
cheap. Although there are a number of potential side-effects one that is
relatively common (and worrying for patients of the age of our daughters) is
weight-gain.
In our daughter's case epilim was not particularly effective and she
experienced some weight gain (not massive, but worrying). As a result she
was switched to Lamictal (Lamotrogine). Lamictal is widely effective, it is
expensive and it has a rare side-effect which may be fatal.
We weighed up the decision and took the risk of the switch to Lamical. We
were lucky, the new drug controlled her seizures at relatively low dosages,
she didn't suffer the rare side-effect and all is now under control.
From our limited experience, young teenagers are frequently prescribed
Sodium Valporate, and it often works. Like many AED's it tends to make the
patient a little "woozy", at least initially. We did not notice any
significant mood-changes though - it just didn't control her seizures :-(
I'm a child of the "scientific revolution" and I'm not able to offer advice
about the options in the area of alternative therapies. Unless you have
strong personal or religious reasons I would try main-stream medicine first.
It is still "black magic" but it is at least subject to a degree of
regulation and control and that gives me more confidence to check that my
daughter has taken her pills twice a day in the expectation that it will
keep her seizures under control.
Regards,
Peter Beach
> My 14 year old daughter has just been diagnosed as suffering from
> epilepsy. She suffers from several petit mal absences in the weeks
[quoted text clipped - 9 lines]
>
> Tim
Charani - 22 Jan 2004 15:34 GMT
> My 14 year old daughter has just been diagnosed as suffering from
> epilepsy. She suffers from several petit mal absences in the weeks
[quoted text clipped - 7 lines]
>
> Many thanks in anticipation of any help anybody can offer,
Belated but FWIW, my son is epileptic and has been prescribed sodium
valproate (Epilim) in liquid form. He's been taking this now for
serveral years with no obvious negative side effects. One thing that
did happen after he started taking it was that his sense of smell and
taste improved markedly. Previously they'd been virtually non-
existent.
He has regular, 3 monthly, check ups with his paediatrician.
Like you, I have concerns about side effects and especially where
associated with long term use of drugs. Also like you, I would have
preferred something more natural, homeopathic. Unfortunately the
homeopathic treatment didn't work quickly enough for the traditional
medical profession.
Rozbud - 26 Jan 2004 14:08 GMT
Hi,I was diagnosed with epilepsy in my early thirties. (I am now 46). I was
prescribed sodium valporate for petit mail and grand mal seizures. This
controlled them completely and apart from a little weight gain, had no other
obvious side effects. After becoming pregnant, the dosage was altered
slightly and I had to have more scans than usual to check the baby had not
been affected by the drugs. I went on to have a healthy baby. Three years
ago I managed to wean myself off the drug completely as I had had no
seizures at all for 10 years. I am still seizure-free. I am not aware of any
herbal remedies that would control your daughter's seizures sufficiently
enough for her to be safe. Regards
> > My 14 year old daughter has just been diagnosed as suffering from
> > epilepsy. She suffers from several petit mal absences in the weeks
[quoted text clipped - 22 lines]
> homeopathic treatment didn't work quickly enough for the traditional
> medical profession.