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Post by compeateropeator on Jun 26, 2016 0:17:39 GMT
This is probably a long shot but I thought I would ask anyway. Has anyone had any experience with treatment for Autoimmune Encephalitis?
I have a young family member that has been diagnosed and I am looking any information on the success, negative outcome and/or side effects of treatment. I believe that it is relatively rare so I haven't been able to find anyone irl that has dealt with this.
Thanks.
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heatherx
Shy Member
Posts: 31 
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Post by heatherx on Jun 26, 2016 3:28:53 GMT
Did they call it autoimmune encephalitis or PANDAS/PANS? How old is the child?
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Post by compeateropeator on Jun 26, 2016 4:03:32 GMT
Did they call it autoimmune encephalitis or PANDAS/PANS? How old is the child? The called it Autoimmune Encephalitis. They are 9 years old and had their first intravenous immunoglobulin (IVIG) yesterday. |
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heatherx
Shy Member
Posts: 31
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Post by heatherx on Jun 26, 2016 4:42:34 GMT
I'm headed out for the night so I cant' respond until tomorrow, but generally IVIG is a treatment for PANDAS or PANS. The code doctors use to get treatment covered for these disorders is autoimmune encephalitis. What are the symptoms? Was it caused by strep? My daughter has been treated for this for over a year now and I know there are other peas with PANDAS kids or who have heard of it.
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Post by compeateropeator on Jun 26, 2016 5:24:19 GMT
I'm headed out for the night so I cant' respond until tomorrow, but generally IVIG is a treatment for PANDAS or PANS. The code doctors use to get treatment covered for these disorders is autoimmune encephalitis. What are the symptoms? Was it caused by strep? My daughter has been treated for this for over a year now and I know there are other peas with PANDAS kids or who have heard of it. Thanks for taking the time to respond. It is my nephew and my brother only referred to it as autoimmune encephalitis, but did mention that there is a variety of disorders covered within this diagnosis. They are not sure of the cause, although it is not tumor related. He began having episodes where he was dizzy, off balance, couldn't focus and difficulty with sight, difficulty with hearing, responding with strange answers, and problems sleeping among other symptoms. He was having 7 to 10 of these a day, some were more severe and lasted longer then others. No rhyme or reason to when they occurred. While they were testing him they did start him a high dose of a vitamin (D ?) and the number of episodes seemed to diminish to just a couple a day. Although that may have been a coincidence, as his neurologist didn't think that was necessarily the reason for the decrease but did say there is a lot that they don't understand about it. They also started him on the prednisone while they were waiting for the insurance co. To authorize the IVIG and he has gone for a number of days without any. I will read up on and ask my brother about PANS/PANDAS. |
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