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Rasmussen Encephalitis

Posted by a44901324 @a44901324, Apr 22, 2016

My son turns 18 in may he has been diagnosed or they say with Rasmussen Encephalitis he started at 8 years old with a twitchy tongue then moved to his face and right arm now mainly lef tleg seizures getting worse but brain shrinkage is non existant he is on kepra ivig and two more medications that i dont remember if your seeing any treatments that we are not can you help he is a patient with Dr Elaine Wiley Cleveland Clinic and Dr Vidare Childrens Hospital columbus thank you for your time

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lparr00 | @lparr00 | Aug 13, 2016

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

REPLY
2 replies
Mentor
Scott, Volunteer Mentor | @IndianaScott | Aug 14, 2016
In reply to @lparr00 "My daughter has bilateral RE and was diagnosed in 2012 when she had just turned 12...." + (show)
@lparr00

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

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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

REPLY
Alyse Brunella | @alysebrunella | Aug 14, 2016
In reply to @lparr00 "My daughter has bilateral RE and was diagnosed in 2012 when she had just turned 12...." + (show)
@lparr00

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

Jump to this post

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.

REPLY
lparr00 | @lparr00 | Aug 14, 2016

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

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