Connect
← Return to Rasmussen Encephalitis
Discussion
Comment receiving replies
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
Replies to "My daughter has bilateral RE and was diagnosed in 2012 when she had just turned 12...."
Hi @lparr00, and welcome to Connect. I want to echo Scott's well wishes to you, daughter and family. Here is some information on Encephalitis from Mayo Clinic may aid you in the deciding whether or not to make an appointment: http://mayocl.in/2br0XMZ. I'd also like you to meet @a44901324 who's son has Rasmussens Encephilitis.
Additionally, should you decide to make an appointment at Mayo, here is a short link to the appt. page: http://mayocl.in/1mtmR63.
Connect
Hello @lparr00. I send you my best wishes and strength to you, your daughter, and family. While my wife did not have the same diagnosis (she had brain cancer) I just wanted to say the best care she received, the best follow up, the most care-filled of her medical care over the years, was that provided by the neuro docs at Mayo. She went to Rochester, but I am sure they have great neuro teams at their other clinics too. Mayo was the only place she received true patient-centered care until she opted for home hospice care. She felt so strongly about the neuro team at Mayo she requested her memorial gifts be directed to support their future work.
During our frequent visits she would frequently comment on how wonderfully the Mayo worked with their younger patients.
Peace,
Scott