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epilepsy, sees a neuro named Pohowalla out of Portland, he comes to
Salem about once a month, he seems to be very good, and although my
daughter has actually only seen him once, every time she has a
seizure he takes the approiate action with her meds. She right now is
on Trileptal and it seems to work well. Our family doctor whom is in
Salem and right at the hospital, is what I believe one of the best.
His name is Mark Patton and he is through the Salem Medical
Associates. My daughter was not diagnosed until the end of 2007. All
of our other doctors just seemed to blow us off until this one, and
he seems to actually care and listen. I realize you may not be in
this area of Oregon but if you are, then check these people out. I am
very particular with my doctors and if I dont feel they are treating
me or my family properly then I switch, but as it stands I feel iv
made a great choice. Hopefully you can look into these people
yourself. My daughter has had Epilepsy since birth, and every time
she has a seizure it is scary. Right now she still sleeps with my
husband and myself, but I am going to get a motion monitor and a
video monitor for her room, so if she moves i will know and then i
can look at the video monitor and see if she is getting comfey or if
I need to go in for a more serious reason. My name is Elizabeth
Elward and you can feel free to e-mail me at tellted@wbcable.
I hope this helps you, and take care. Feel free to contact me, I will
do what I can to help.
----- Original Message -----From: maid2bearSent: Thursday, September 25, 2008 3:18 PMSubject: [Cent_Wa_Epilepsy_Support] Need answers in OregonA 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.
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