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acquired brain injury
Wed, 02/02/2005 - 09:51Topic: Family & Friends
Hello everyone! I am new to the group, and I have a child who has an acquired brain injury due to viral encephalitis. She has been having clonic/tonic seizures for over a year. We have tried the keto diet and every med known. Nothing has helped. We have been referred by our neurologist to an epilepsy clinic in St Louis. Has anyone out there had any experiences with epilepsy centers? Thanks
Comments
RE: RE: acquired brain injury
Submitted by meghan555 on Wed, 2005-02-02 - 09:51
My four year old was just diagnosed with Rasmussen Encephalities in January. Is that the same thing as viral? I was told that the only real cure for what she has is to remove the right side of her brain, wich is were it is at. She spent about 23 days in the hospital getting EEG and EMU's done. She was having about 100 seizures a day, and they all started on Oct. 29. On Dec, 29 she had a Right Frontal Lobectomy and they did a biopsy on the "Tumor" and it came back the Encipilities. She has not had any brain injury. We live in California and they are trying to figure out what hospital to send her to, either UCLA, UCSF, or Duke's university in North Carolina. Any suggestions would be great. Thank you.
RE: acquired brain injury
Submitted by momofm on Wed, 2005-02-02 - 06:52
Hi...Two years ago, our daugher also had viral encephalitis -- and was left with refractory seizures. We too tried everything...we had been through 3 or 4 neurologists before we were referred to NYU Epilepsy Center in New York. We tried everything...all medications, 3 at a time, nothing worked to control her seizures for more than a week or two at a time...not without side effects also.
Our doctor at NYU, Dr. Daniel Miles, has been wonderful. Michele was hospitalized twice last year for video EEG monitoring...to see if she might be a candidate for surgery...we found out she was...she just had surgery earlier this month, and is doing incredibly well right now...she's already back in school.
This is a very condensed version of what we have been through...you are actually the first person to post a message regarding post-encephalitis seizures...I sometimes thought my daughter was the only one...it's been a nightmare but we are hopeful that we are on to a much better life for her...
How old is your daughter? Michele is 6-1/2 now, she was hospitalized exactly two years ago with viral encephalitis, we were there for 2 weeks, then another 4 weeks due to drug fever, seizures, etc.
Hi...Two years ago, our daugher also had viral encephalitis -- and was left with refractory seizures. We too tried everything...we had been through 3 or 4 neurologists before we were referred to NYU Epilepsy Center in New York. We tried everything...all medications, 3 at a time, nothing worked to control her seizures for more than a week or two at a time...not without side effects also.
Our doctor at NYU, Dr. Daniel Miles, has been wonderful. Michele was hospitalized twice last year for video EEG monitoring...to see if she might be a candidate for surgery...we found out she was...she just had surgery earlier this month, and is doing incredibly well right now...she's already back in school.
This is a very condensed version of what we have been through...you are actually the first person to post a message regarding post-encephalitis seizures...I sometimes thought my daughter was the only one...it's been a nightmare but we are hopeful that we are on to a much better life for her...
How old is your daughter? Michele is 6-1/2 now, she was hospitalized exactly two years ago with viral encephalitis, we were there for 2 weeks, then another 4 weeks due to drug fever, seizures, etc.