Hi
we was wondering if anyone has been to
cincinnati children's epilepsy department
or has heard anything good/bad about it.We
checked out their web site and noticed
that it is one of the top hospitals in the
nation for treating epilepsy. We are
currently going to dayton (oh) children's
hospital and have been going there for
almost 4 months now and our 6 yr old son
still does not have control of his
generalized seizures. We are on the third
dr there and really like him but shane is
also on 4 meds right now and still having
seizures. We went for a second opinion
yesterday at cincinnati and the dr there
said the she wants to take him off the
extra meds and find out where the seizures
are starting and get "aggressive" with
treating shane and find the right med for
him. We are scheduled for a 48 hr eeg
and pet scan at the firs of feb. So if
anyone has any info about either hospital
it would be greatly appricated.
Thanks, dawn
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kayakmom
Experienced User , Rather EHEALTHy
Joined: 21 Jun 2004 Posts: 252 Location: Conn
Thanks: 2
Thanked:0
Posted: 01-19-06 22:31pm
Do you know if it is a comprehensive
epilepsy program? I know some who love
rainbow babies children's hospital
epilepsy clinic. Have not heard as many
who use cinncinatti.
You can ask at www.Efa.Org, go to
ecommunities. It is a much bigger
community than here. Try parents helping
parents.
The other board to try is www.Braintalk.Org
go to child neuro forum.
I sure hope you can find better help!
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darbie05
New User, Becoming EHEALTHy
Joined: 15 Dec 2005 Posts: 15 Location: Ohio
Posted: 01-20-06 18:37pm
Thanks for the info kayakmom! We hope to
get something done soon. We got back his
blood lab from tuesday and the dr said
that his levels was not even close to
being up to where they was to be and that
was only after 2.5 hrs after giving his
the meds(4 differnt kinds!) so she upped
the one and so far it has been 2 days and
no seizures. :d
dawn
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kayakmom
Experienced User , Rather EHEALTHy
Joined: 21 Jun 2004 Posts: 252 Location: Conn
Thanks: 2
Thanked:0
Posted: 01-22-06 04:46am
It is amazing how many meds the kids
sometimes need! So glad that you have had
a quiet couple of days now. Hoping that
the increase will keep seizures away.
