Thank you for this video. My son was diagnosed with autoimmune encephalomyelitis at 14. He did not respond to the steroids. He responded very well to the plasma paresis. His neurologist Dr. Vargas calls him her miracle patient. Thank God he is healthy now in his second year of college! The only issue is a struggle academically, he complains of memory challenges. I feel for him because prior to the Illness he was an honor student. All the best everyone, blessings! 🙏🏾🖤
Thank you for sharing my daughter has had this since September 2016 she's 3 and has has all of the treatment u mentioned above ..she tried the steroids but they didn't work then we did scan her for tumors she was fine ..the mri scan didn't show anything but the lumbar injection did...we then did the plasma exchange treatment 5 times but didn't work so then we did the first dose of rixtubub then 2 weeks later IVIg and again last month and amazingly she is now 80% back to her normal self without the crazy movements or screaming ..she also has been saying words like no when we try to do her nose tube . which is amazing as this girl was in unable to walk and move around the bed and talk or make any noises ...to now knowing who we are ..sit herself up ..knee up ..stand string on her feet holding on a bed ...when everyone said she wouldn't ..she's now been told 80 percent recovery chance ..the speech I pray will return ...but am thankful I was with the NHS in the UK as the treatment like the rituximab worth £6.000 for each dose was free. also they are times after treatment u may see the patient going backwards in behaviour. .don't worry as sometimes the illness does that but is a sign for a week or 2 that they are actually getting better ..just that the treatment is reaching and acting on what it needs to ...
we have been here since December 19th and there is no improvement. they are in the first treatment of the plasma. ..how is your daughter?. .just need some support, help and answers...i would like to sepak to you if at all possible
Sweetie Marie can you please contact me? We were in the same situation at the same time but unfortunately, my doctors only focused on mitochondrial disease. I recently had an assessment by a world renowned physician who believes it was a smoldering encephalitis. If only my daughter received the treatment yours did. I would love to chat. Sal 9179229788
can anyone of you contact me..my father was diagnosed lgi1 autoimmune in july 2020. he has been given steroids ..ivig...its been three to four months .. he is able to respond to questions with yes or no..he walks but sometimes falls down..he cant remember anything..do I need to go for step 3 or step 4 treatment procedures ..or he is going to get better with time..
Halo dokter Ponakan saya perempuan usia 7tahun mengidap penyakit autoimune ensefalitis sudah 28 hari kejang kejang 4x pindah rumah sakit dan saat ini sudah di RSCM. Tindakan apa yang paling tepat untuk ponakan saya ? Mohon dibantu
My 2 years baby has this and we take ivig only one dose trecment she is good but ofter 5 months she is haper active and adhd beheviar when my baby come in narmal stage how many years it takes to ricover plsssssssssss
My 13 year old niece is going through this as we speak. Praying for your baby, they will both be just fine. Sending you and yours love. It is very scarey.
Please help us! My 18 yo daughter has has what there talking about, she is at Kiaser Hospital in Ontario California right now, and it seems there having trouble treating this. Or figuring this all out. There is alot of information what's going on, and I can give. Is there anyway to get a hold of these Dr's, Maybe at least they can give any information to help? I want to save my daughter's life, Please help us, It's been 10 days of first diagnosis. I can give email or # It's 11/27/23
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AMEN!!!!THANK YOU. THIS WOMEN SPEAKS TRUTH FOR THOSE WITH NO VOICE!!!
Thank you for this video. My son was diagnosed with autoimmune encephalomyelitis at 14. He did not respond to the steroids. He responded very well to the plasma paresis. His neurologist Dr. Vargas calls him her miracle patient. Thank God he is healthy now in his second year of college! The only issue is a struggle academically, he complains of memory challenges. I feel for him because prior to the Illness he was an honor student. All the best everyone, blessings! 🙏🏾🖤
Thank you for sharing my daughter has had this since September 2016 she's 3 and has has all of the treatment u mentioned above ..she tried the steroids but they didn't work then we did scan her for tumors she was fine ..the mri scan didn't show anything but the lumbar injection did...we then did the plasma exchange treatment 5 times but didn't work so then we did the first dose of rixtubub then 2 weeks later IVIg and again last month and amazingly she is now 80% back to her normal self without the crazy movements or screaming ..she also has been saying words like no when we try to do her nose tube . which is amazing as this girl was in unable to walk and move around the bed and talk or make any noises ...to now knowing who we are ..sit herself up ..knee up ..stand string on her feet holding on a bed ...when everyone said she wouldn't ..she's now been told 80 percent recovery chance ..the speech I pray will return ...but am thankful I was with the NHS in the UK as the treatment like the rituximab worth £6.000 for each dose was free. also they are times after treatment u may see the patient going backwards in behaviour. .don't worry as sometimes the illness does that but is a sign for a week or 2 that they are actually getting better ..just that the treatment is reaching and acting on what it needs to ...
we have been here since December 19th and there is no improvement. they are in the first treatment of the plasma. ..how is your daughter?. .just need some support, help and answers...i would like to sepak to you if at all possible
Erika Navarrete how are your kids doing now and what are the treatments they have been receiving.
Sweetie Marie can you please contact me? We were in the same situation at the same time but unfortunately, my doctors only focused on mitochondrial disease. I recently had an assessment by a world renowned physician who believes it was a smoldering encephalitis. If only my daughter received the treatment yours did. I would love to chat.
Sal
9179229788
can anyone of you contact me..my father was diagnosed lgi1 autoimmune in july 2020. he has been given steroids ..ivig...its been three to four months .. he is able to respond to questions with yes or no..he walks but sometimes falls down..he cant remember anything..do I need to go for step 3 or step 4 treatment procedures ..or he is going to get better with time..
@@warisbaba7869 go with the other steps. And also get the 2nd line treatment. Rix is gonna do wonders
Thanks god bless you
Can't hear you
Halo dokter
Ponakan saya perempuan usia 7tahun mengidap penyakit autoimune ensefalitis sudah 28 hari kejang kejang 4x pindah rumah sakit dan saat ini sudah di RSCM. Tindakan apa yang paling tepat untuk ponakan saya ? Mohon dibantu
My 2 years baby has this and we take ivig only one dose trecment she is good but ofter 5 months she is haper active and adhd beheviar when my baby come in narmal stage how many years it takes to ricover plsssssssssss
My 13 year old niece is going through this as we speak. Praying for your baby, they will both be just fine. Sending you and yours love. It is very scarey.
Please help us! My 18 yo daughter has has what there talking about, she is at Kiaser Hospital in Ontario California right now, and it seems there having trouble treating this. Or figuring this all out. There is alot of information what's going on, and I can give. Is there anyway to get a hold of these Dr's, Maybe at least they can give any information to help? I want to save my daughter's life, Please help us, It's been 10 days of first diagnosis. I can give email or # It's 11/27/23