Great presentation. My daughter was diagnosed with AE and spent 5 weeks at the hospital. She would get emotional, disoriented, memory loss, and some psychosis. She was on IV and oral steroids, received 4 doses of IVIG at the hospital and received one dose of Actemra (Tocilizumab). She seemed to improve but doctor now wants her to start Rituximab because insurance won't cover Tocilizumab. Is Rituximab a good medicine with a good outcome in treating AE?
@@LeboMolamu She is doing great now after receiving Actemra for 6 months as an outpatient. Have they found an antibody for your daughter? What are her symptoms?
@@arielrodriguez6980 everything you have mentioned above and also being unable to keep a body still, struggling to sleep. And they started her on Steroids 2 days ago and it has brought epilepsy. They have tried sedating her but I think her body has went through so much shock she finds it difficult to just get more than 2 hrs sleep and it's 5 days.
@@LeboMolamu When my daughter got steroids it made her worse really agitated and all over the place. Has your daughter gotten IVIG? Usually they start with steroids and IVIG and depending on the progress there is also Actemra and Rituximab.
@@arielrodriguez6980 not yet but she mentioned something along those line, that she will be placed in ICU, they keep mentioning many things and test and I can’t keep up because yesterday they did an LP on her and Eeg and today another MRI.
Great lecture, thank you very much for the useful information
Great presentation. My daughter was diagnosed with AE and spent 5 weeks at the hospital. She would get emotional, disoriented, memory loss, and some psychosis. She was on IV and oral steroids, received 4 doses of IVIG at the hospital and received one dose of Actemra (Tocilizumab). She seemed to improve but doctor now wants her to start Rituximab because insurance won't cover Tocilizumab. Is Rituximab a good medicine with a good outcome in treating AE?
Hi, your story is similar to mine how is your child’s progress we are currently in the hospital and she’s in a critical state.
@@LeboMolamu She is doing great now after receiving Actemra for 6 months as an outpatient. Have they found an antibody for your daughter? What are her symptoms?
@@arielrodriguez6980 everything you have mentioned above and also being unable to keep a body still, struggling to sleep. And they started her on Steroids 2 days ago and it has brought epilepsy. They have tried sedating her but I think her body has went through so much shock she finds it difficult to just get more than 2 hrs sleep and it's 5 days.
@@LeboMolamu When my daughter got steroids it made her worse really agitated and all over the place. Has your daughter gotten IVIG? Usually they start with steroids and IVIG and depending on the progress there is also Actemra and Rituximab.
@@arielrodriguez6980 not yet but she mentioned something along those line, that she will be placed in ICU, they keep mentioning many things and test and I can’t keep up because yesterday they did an LP on her and Eeg and today another MRI.
Hi