j*k
发帖数: 11 | 1 My son is 8 years old, and had four seizures so far. The first one was
around one year old, second one when he was five, and the third was last
October, and he had the last one a week ago. Each time, he was coming down
with something like strep throat, before the seizure he had no fever, and
right after the seizure he had a fever. I think the seizure happens right
when illness cause his temperature to rise. The seizures were grand mal
seizure which lasted around one minute. The middle two times, he wet his
pants. Each time he slept after the seizure for a few hours, then he was
fine.
The first two times the doctor said not to worry and he will out grow it.
We were advised to see a neurologist last October. EEG, MRI and CAT scan
all turn out to be normal. Now after the last one the doctor prescribed
Keppra, saying it is usually the medicine they start with since it has
little side effects, and we will try for two years then stop it to see
whether he out grow the seizure. I search online and Keppra had a lot of
side effects including depression and irritability. My son is a bright and
loving boy, and I will hate to see his nature changed because of medication.
I don't know whether we should even consider the option of not to take
medication, since he could fall and really hurt himself at school (all last
three time is at school). But maybe I should just keep him home whenever he
has the first sign of illness, and load him with Telyno.
Thanks for reading through the post and any advise is appreciated. | y*****g
发帖数: 193 | 2 I understand you are concerned about side effects of Keppra. Acutally, all
antiepilectic drugs have side effects, and keppra as the newest one has less
side effects compared with old meds. Keppra is also thought to be very
broad spectrum and safe.
One of my coworker daughter was put on Keppra for post-occiptial region
seizures. She had been on Keppra for 2 years, a very active volleyball
player through these years. She was just taken off the medication recently.
So far, so good.
I just had an epilepsy class two weeks ago, and had some notes from the
professor. If you want it, you could drop your email acount to me. If you
live in D.C area, I also refer you a wonderful pediatric neurologist who is
also the professor of our lecture.
As you said, your son's episodes comes more frequently. I copied some
contents from the notes, hopefully, it will answer some of your questions.
The follwing is just copies from my notes:
If you have one seizure, what’s the risk of having another?
A: There’s only about a 40% risk of having another seizure in the next five
years. So, we don’t immediately put them on medication.
However, if there has been a recurrence, (a second seizure), then the chance
of a third is 75%. Repeated seizures generally warrant medication,
depending on the syndrome.
To treat, or not to treat? Should we treat everybody with a seizure?
One of the problems with epilepsy is the risk of sudden death. We try
and reassure patients that it’s okay to have seizures. It only affects 1%
of your life. The chief justice of the Supreme Court has epilepsy, in fact.
But, there is an increasingly recognized risk of SUDEP (sudden unexpected
death in epilepsy).
• Of people with active epilepsy, 10% of them died from status
epilepticus. Status epilepticus is defined as a state of seizures, either
continuous or serial seizures (without recovery in between) lasting for at
least 30 minutes.
o Serial seizures are measured from the beginning of the first one to the
end of the last one, without subtracting the time in between seizures.
• Accidents do happen to people with epilepsy.
o Example: we have at least one drowning per year, and recently had an
epileptic child in a confused state who walked in front of a metro train.
• Any chronic disease, including epilepsy, can cause depression and
hopelessness. This explains why suicide rates tend to be high amongst
epileptics.
• SUDEP.
o People with uncontrolled seizures have a higher risk of dying
unexpectedly. | j*k
发帖数: 11 | 3 Thanks for the information. I am very interested in getting the full note.
Friend told me that I should not look for the review of the medicine online
because every medicine has bad side effects. However, the info online is
very scary. People who took it claim depression, feeling cut off from the
world, irritation, a total change of personality, memory lost, feeling of
electrical shock, joint ache etc. And once one is on the medicine, cutting
off from that may worsen the seizure. I am thinking, does it worth it to
treat seizure that might occur once every few month, and last about a
minutes with medicine that needs to be taken twice daily?
I am thinking of quitting my job so that I can keep my son home at the first
sign of any sickness. (I teach high school, so taking too many days off is
not practical.) My son doesn't get sick often. And up to now, his seizure
only happens when his temperature raises. If we can prevent his temperature
to raise, we should be able to prevent seizure. By training him to know
when the seizure may happen (he said that he felt very tired), we might be
able to avoid getting him hurt when he falls. And I sincerely hope that he
will out grow the seizure in a couple of years.
Should we take the risk of side effects that might change his life or take
the risk of him getting hurt when he falls, and getting worse? Since he was
born, we were always busy working. He was sent to daycare since he was six
month old. We had sent him to school when he was not feeling well. Maybe
if I had done a better job of taking care of him, he may not have as many
seizures. | g*****j
发帖数: 1211 | 4 I understand your frustration. Here are my three points based on my
understanding of febrile seizure in kids.
1) THIS IS NOT YOUR FAULT. Some kids tend to get febrile seizure more often
than others. This is genetically determined, not a lack of care. Although
most kids with febrile seizure resolves by themselves, a small portion of
them will develop into seizure disorder as they grow older. It will be nice
to be able to predict who will get it and know how to prevent that, but
unfortunately we don't. To quit your job most likely makes no difference in
the end. In case god forbids, your boy does have seizure disorder down the
road, it is not the end of the world. People can live normal life with
this condition with medication. And most importantly he probably need a
strong mom at home and live a normal life as other kids any way.
2) About Keppra. It is the drug with the best side effect profile. Adverse
effects listed online are really not to be read by patients. They are for
doctors and legal purpose. What you don't see is the actually severity and
incidence of getting these side effects. A good neurologist knows what side
effects to monitor. In case it happens, you can always stop the medicine
and the side effect will go away.
I am not a neurologist, and cannot tell you when it is appropriate to start
treatment for febrile seizure. There is a real concern of injury during
seizure, which may result in irreversible damage. I think it is important to
trust your doctor, because he/she is in a much better position than you to
weigh the benefit and risk. For matters you cannot decide, you can consider
getting a second opinion. The best person will be a pediatric neurologist,
or a neurologist who specializes in seizure disorder. | s********g
发帖数: 290 | 5 从你的描述来看，吃比不吃利远大于弊。可惜，医疗至今还未至完美的程度。不妨试试
看看keppra在你儿子身上到底效果和附反应如何。不行，停药就成。
【在 j*k 的大作中提到】
: My son is 8 years old, and had four seizures so far. The first one was
: around one year old, second one when he was five, and the third was last
: October, and he had the last one a week ago. Each time, he was coming down
: with something like strep throat, before the seizure he had no fever, and
: right after the seizure he had a fever. I think the seizure happens right
: when illness cause his temperature to rise. The seizures were grand mal
: seizure which lasted around one minute. The middle two times, he wet his
: pants. Each time he slept after the seizure for a few hours, then he was
: fine.
: The first two times the doctor said not to worry and he will out grow it.
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