lparr00 (@lparr00)

Hello @a44901324, my 16 1/2 yr old has Rasmussens Encephilitis (actually it’s bilateral, extremely rare!). She was diagnosed at age 12 and a hemispherectomy was out of the question. We are considering Mayo for a second opinion ( we’ve been at Cincinnati children’s for the last 5 years).
I was just curious to see if you ever ended up seeking an opinion at Mayo?
Thank you,
Laura

My daughter has bilateral RE and was diagnosed in 2012 when she had just turned 12. A hemispherectomy was not an option because of paralysis and blindness plus with her condition being so rare.
Until now, she is being treated with 4-5 different Rx/day and IVIG. But we are starting to see changes, not in the seizure sense but we have reason to believe that there is far worse damage that we believe. Her appetite, or lack there of, has declined to the point of food avoidance/anorexic, her comprehension/processing is not as good as well either.
We’re looking to possibly make the trip to one of the Mayo clinics to look into this. She’s 16 1/2 now and has managed her life with seizures relatively well up until now! I guess I’m just wondering if there are any other RE parents/patients out there.
Thank you! Laura