great that she likes her brace.  is there a heriditary link of epilepsy in the family?

 
Thanks,
Tamar

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tamar Mag Raine, Commissioner, 

Oakland Mayor's Commission on People with Disabilities

[log in to unmask]
http://www.zazzle.com/TamarMag*
www.cafepress.com/tamarmag
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~




________________________________
From: JOHN RUNER <[log in to unmask]>
To: [log in to unmask]
Sent: Friday, July 24, 2009 5:57:07 AM
Subject: Upadate on Mary Runer

Hello,



My daughter Mary 9 has recently been confirmed by sleep deprived EEG to have
Epilepsy on top of her  CP..it is due to
excessive activity in her left hemisphere and seems to be triggered by
fatigue.  The neurologist is not medicating her yet as she has only had
one confirmed seizure ( he is having us call if we even suspect another seizure
and will start her on meds at that time, he is also having her come in every
couple of months for tracking).   Mary also had a second pulmonary
function test and it confirmed a twenty percent reduction in lung volume
capacity compared to her height and weight.  Her pulmonologist said to
keep her away from the larger cities as much as possible as she is very
sensitive to air pollution and we live at high elevation above the smog. At
this point Mary does not require oxygen but she did until around two and a
half.  Mary has her right ankle afo and actually loves it!  She is
not tripping her self now.   We also recently started a special needs
trust for her.  I sat and cried about the epilepsy as I used to have grand
mal seizures and still shake on occasion.  I took Phenobarbital and it was
terrible, apparently if she starts meds now they are much better. 



Thanks,



John Runer dad to Mary RH, cognitive delays, Epilepsy


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