I am very sorry that your son has started
to have seizures! They can be difficult
to get under control but it does take
time. You need to find the right
medication, right dose and right timing of
the doses that helps your child without
too much sedation. It can take 4-6 weeks
to really figure out if a med is going to
do ok and for some of the side effects to
ease up.
Diastat really is great to stop the long
seizures, but it will sedate him for
awhile afterwards. He needs that rest
after one anyway.
Most children with epilepsy do not have
cognitive issues. Around 30-40% will have
some issues with learning, though. There
is testing available to see if the
seizures or medications are affecting your
son and what accomodations he might need.
It is very rare for a child to die from
his seizures, often it is a child on
multiple medications (3 or more) or one
who has other health issues as well. It
is so scary to deal with seizures and live
with the fear of all that can happen.
Reading the safety advise can really help
you make a safer home for him. Safety
pillows, using a monitor to hear him as he
sleeps, supervision on playgrounds and in
the bath can all reduce risks. It is
tragic that some children have died
because of epilepsy.
It is a good thing to get that second
opinion and feel secure that you are doing
all you should be doing.
Sounds like you are on the right path. I
know it is very overwhelming at first.
You can get some very good basic seizure
information and first aid at
www.Efa.Org go to
answerplace. They will also send you some
free information.
Www.Epilepsy.Com go
to the left hand menu and you can find a
lot of very good information on seizures,
treatment and learning issues.
I wish you and your boy all the best.
My son has been having seizures since he
was young, but was not diagnosed until he
was 7, he is now 14.
