Katrina,
Tuberous Sclerosis Complex info at www.TSAlliance.
<http://www.tsallian
her brain & one in her heart. It's a genetic screw up of 2 genes, T2 & T3
causing the body to grow calcified tubers in the heart, eyes, lungs, liver
and brain along with a few other nasty things Angiofibromas on the face. She
began seizing at 28 months. It is reportedly the known leading cause of
epilepsy. 70% random luck of the draw, 30% inherited gene trait. There is
one clearly evident on left Temporal lobe in PET's and MRI's which is also
identified as a seizure point on EEG's.
Many times causing seizures and or Autism in those with it. My daughter was
born with several unpigmented spots of skin known as Ash Leaf spots which
are common also of TSC. Fortunately for her it was a sign to do DNA testing
for confirmation of the cause, however no drug therapy or combos have
controlled the seizures yet. For anyone with undiagnosed seizures causes I
would recommend reading more at the link above. The Ash Leaf spots are not
always present on everyone with TSC.
I will inquire as to why her specialists and surgeon have not mentioned
doing WADA Testing tomorrow.
Pat
Most likely the temporal artery has thickened. I am not sure what they would
do for that.
____________
From: Katrina Mckeon <katrini24@yahoo. <mailto:katrini24%
To: epilepsy@yahoogroup <mailto:epilepsy%
Sent: Sunday, October 4, 2009 7:52:04 AM
Subject: Re: [epilepsy] WADA Testing
What is a temporal tubor? I have never heard of it before?
Katrina
____________ _________ _________ __
From: Aina & Pat DeLorenzo <aina-pat@cox. net>
To: epilepsy@yahoogroup s.com
Sent: Saturday, October 3, 2009 10:33:38 AM
Subject: RE: [epilepsy] WADA Testing
Tristan, Great post. Do you know if they do the WADA angiogram on children?
My 7 yr old has a left temporal tuber from Tuberous Sclerosis which has been
identified by PET, MRI and video EEG's as one area of seizure foci. However
we are concerned her speech may be affected if it is removed. The area in
question shows it has metastasized (sp) also. They "think" her speech has
migrated to somewhere else. We do NOT like that line of thinking and need
better information.
Pat D
_____
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