I have rasmussens encephalitis

[melfred_20]

I have lived with rasmussens encephalitis for about 15 years now. I did not need to have brain surgery. I has told i needed brain surgery and found a cure that stopped the progress before i had the surgery. I have very little brain damage and lead a almost normal life. I went 10 years without a seizure and started having some problems after i had my son two years ago. I am very blessed that i made it out so well.

[Bernard]

Hi melfred_20, welcome to the forum.

There are a couple of other members here who have children diagnosed with Rasmussen's (and I'm sure would love to hear about your success story):

http://www.coping-with-epilepsy.com/...bers/criskris/

http://www.coping-with-epilepsy.com/forums/members/cjm/

http://www.coping-with-epilepsy.com/...rs/mikeandjen/

[brain]

Mel!

Welcome to CWE and glad to have you here!
Please feel free and make yourself a home here!

[criskris]

Hi Melfred!

I am fascinated by your story and so happy for you that you didn't have to have brain surgery for Rasmussen's. I would be very grateful if you wouldn't mind answering a few questions. This is very important to me as I am a co-founder of The Hemispherectomy Foundation and your answers may very well help out some of our families who have not opted for surgery yet.

1) How old were you when you were diagnosed with Rasmussen's Encephalitis.
2) How was the diagnosis made for RE? (MRI, EEG, Brain Atrophy, Epilepsia Partialis Continua, PET Scan, Brain Biopsy, CT Scan)
3) Which side of the Brain is your RE? or Both?
4) What type of seizures did you have? Do you have?
5) What was the "cure" that you mention?
6) What Doctor and Institution made the diagnosis?

Thanks You so much for any information that you would like to share?

Cris Hall
The Hemispherectomy Foundation

[melfred_20]

I can't say for sure when i was diagnosed because i was misdiagnosed for a few years, but i believe it was around 8. I know that i had at least one mri, eeg, pet scan but im not sure about the rest. I know that my doctor diagnosed me only because he put my information into some computer system that matched symptoms with diseases and it happened to come up. After he did this i was sent to washington dc to do a study for the national institute of health. I was told that they at the time were trying to get the pet scan approved by the fda so it was kind of experimental. It was though the pet scan that it was conformed that i needed the surgery. My RE is on my right side so it affects the left side of my body. As far as i know i had grand mal seizures. I was diagnosed at UW childrens hospital in madison wi.The doctor that diagnosed me has left however. The cure for me was acupunture. When my parents found out I needed the surgery they obviously wanted to try everything before it happened. Acupunture was the first thing they tried. I was slowly taken off of my medicine and put on a diet. I had more seizures getting off the medicine but once i was off and got my body in check i stopped having seizures completely. It stopped the disease from spreading and i was left with very little brain damage. I went around 10 years without a seizure and only started having problems when i had my son two years ago but had all the test done again and it showed that nothing changed. I lost movement of my left ankle/foot, some memory problems, and my left side shakes a little. Considering what could have been im doing very well. No one knows i have it unless i say something. So i walk normal etc. I have never seen my medical records so i don't know what they say but my doctor said he noted in my file that acupunture worked. I also had a article written about me in the wisconsin state journal about acupunture curing me. I had no idea that so many people had the surgery. I have been looking for a website to connect with others who have RE because i want to help and just happened to find this one. I would love to help anyway i can. melissa