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Cortical Dysplasia Website

Hi,

I have a 2 year old daughter who had her very first seizure in June 08.  She was only 22 months old at that time.  She has "drop seizures".  To summarize, her pediatrician sent us to a neurologist who ordered an MRI who diagnosed a brain tumor in the right frontal lobe.  Low Grade Glioma.  From there we saw a neurosurgeon and epileptologist.  We were admitted for an overnight EEG and didn't leave for 34 days.  She endured several days of sedation for 2 different kinds of MRI's and a PET scan.  On her 9th day of hospitalization she had a craniotomy for placement of the intracranial EEG video monitoring.  We had to live like that for 10 days.  There were days of the medical team doing the brain mapping to make sure of the exact location where the seizures started because it was on the motor strip.  Then she went back to surgery for a resection of the tumor.  This surgery left her paralyzed on the left side of her body...everything.  We went home 5 days later and started physical therapy that week.

After 10 agonizing days the pathology report came back diagnosing her with Cortical Dysplasia. 

That was 10 weeks ago, and if you saw her now you would never know she had any disabilities.  She walks with a slight limp, has trouble with her balance at times, still can't stretch her fingers all the way out but otherwise is doing great.  However, she is having some seizure activity.

You can get her full story on her Caring Bridge website at www.caringbridge.org/visit/Corab

I have worked in medical offices for the last 20 years and research everything.  I want to learn as much as possible about her condition so that I understand what is going on with her and also so that I can make the best possible decisions about her medical treatment.  After exhausting all efforts trying to find info on Cortical Dysplasia I decided to purchase a website dedicated to that cause.  I have been blessed to have my daughter's neurosurgeon agree to work with me on this website.  Not only is he a wonderful surgeon, but a caring person who also has written several published articles on Cortical Dysplasia and as a professor, does several lectures every year on the newest information.  The website is still under contruction but should be up within the next week.  It is my mission to take the burden of research from everyone who is seeking answers and make it available on our website.  I have joined every medical bulletin that I can find and every medical journal and clinical trial site that I have been referred to by physicians at our Childrens Hospital here in Bham, Al and any other sources I continue to find.  I search for new info every day and read through hundreds of medical bulletins that have been emailed to me to sift through it for you and put only what we want or need on our website.  There will be fundraisers, awareness products, live chats, support groups and more.  Please keep checking back as I will post the info here as well as other blogs and forums about website location and date available. 

Please help raise awareness and support our cause by joining our website.  Together we can make a difference!     

Comments

Re: Cortical Dysplasia Website

Sounds great! I'll visit it.

How is your daughter doing?

I am looking into surgery for my daughter with high hopes of a positive outcome!

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