----- Original Message -----

From: maid2bear

To: Cent_Wa_Epilepsy_Support@yahoogroups.com

Sent: Thursday, September 25, 2008 3:18 PM

Subject: [Cent_Wa_Epilepsy_Support] Need answers in Oregon

A year and a half ago our son said his leg hit the wall, got all
stiff and he couldn't catch his breath. He had a strange rash at the
time so we reported this to his doctor. In our ignorance. we thought
he was having growing pains and a panic attack. He was 11 1/2 at the
time. A month and a half ago he was napping on the couch while I was
in the recliner when he suddenly sat up and said " oh my gosh, not
again." His back was to me and I saw his leg bend upwards and start
to shake. I went over to rub out what I thought was a leg cramp. When
he did not respond to me repeatedly asking him where it hurt, I
looked up into his face and his eyes were rolled back, his whole body
was shaking and his lips were turning blue. I called 911 and ran to
the door and screamed for my neighbor to help, he continued talking
to 911 while I tried to perform CPR but when I couldn't open his
mouth I knew he was having a seizure. It lasted 3 minutes and when he
came to, he talked as if he had a stroke. In recalling the events of
the evening before and without getting into the details to save him
embarrassment, I am sure he had one early in the morning also. My
husband and I had him transported to the ER where after discussing
his history they put him on dilatin. A week later he saw a
neurologist, who seems to have the communication skills of a
mushroom, and he changed his medication to keppra. His CT, blood work
and EEG have all come back normal. He has since had an MRI and we had
a follow up with his primary care physician who told us , and I
quote, " the MRI says maybe this and kinda that but altogether
normal." He then told us that it would be okay for our son to sleep
alone in his own room again and stay home alone in the mornings for
the hour and a half that my husband and my shifts overlap. I was not
comfortable with this idea but our son had no memory of his seizuer
and my husband had only seen him coming around so they convinced me
to lighten up. Well, 3 days later he was sleeping in his own room and
I heard a boom. I ran to his room and he had fallen out of his bed,
hit his head. his head was wrapped up in his blankets and he was face
down on the floor. He doesn't thrash during his seizures, he is
incapacitated. Come to find out, he had one earlier in the evening
and talked his self through it in his head. He had a loss of control
in his right leg for the next 5 hours after his seizure. When I
called his doctors, they both said to up his meds to 2000mg a day. No
one wanted to see him and we feel as if we are negotiating this in
the dark. His neurologist has said epilepsy without actually saying
it. I am looking for anyone who has a similar story and can maybe
help us look in the right direction. We are understandably frightened
and trying to keep it from our son. We don't want him to use this as
a crutch and we want him to still be able to have a normal life. We
need information. Thank you for any help you can offer and for
reading a very wordy post.