| Question #1 NO
Question #2 No
Question #3 Scoot is not experiencing a relapse or continuation of encephilitis-----he is having side-effects of the e he had as a 7 year old. Two neuro's and one internest has told us after several MRI's and CT's that there is white matter on the brain. The cause in their opinion is from the encephilitis. This is what is called a complication of the brain fever.
Encephalitis is not an progressive illness. The effects of e is different in each case and can range from mild to severe. All side effects are a result of intense fever for a prolonged period of time.
This is from Mica --Scoot's caregiver and wife of 30 years
and from Scooter himself a suvivor for 46 years Dannon we hope this helps, we are only looking for more answers than we have, we do not want to upset anyone, having e or the side effects is hard enough. Love *** Seans nureo assured me that he hasnt had any relapses. But quite frankly Im in doubt I just lack proof.
He seems tobe getting worse in many ways and I cant get any real answers except that its all due to the brain damage in his right temporal lobe. How can he be getting worse yet the virus is not suppose to be active anymore??
All the data I have read so far hasent specified weather or not it is possable for E to relapse I just dont know. love von Seans mum. *** Experiencing a relapse? No.... I have not done such a thing. I get tired much more swiftly than pre-e.... but with proper self-care, life carries on just great.
Enceph progressing? No.... I had Herpes Simplex Encephalitis. In the two years post encephalitis, I suffered some very low moments. I don't call those progressions... they were a part of my 'getting better.'
Enceph relapse? No.... my medical contacts have never suggested a relapse, or return, of encephalitis. I understand that in this world, one can "never say never." But, to carry the weight of that worry would do me no good. To be drowned in worry and angst about the questions of "will it return??" "could it return" "I bet it will return next month!". None of these questions is productive to me enjoying a warm and happy survivor's life. None of these questions would change the future... my future. So, I do not turn a blind eye to the possibility. But, I DO not waste time with considering it. I am here. God kept me here for a reason. And that reason was NOT for me to stew and question my future. (Wendy) *** for me, i notice w/ depression the e residuals get worse, bigtime. i never had a doctor tell me much about e .. and if they did, i probably forgot it right away. i need remission for my depression! (Kimberlyy) | *** Hiya answer to question 1 yes and no they said in 2000 possible reoccurance from my neurologist
in neuropysch report from testing done in 200 prior to reoccurance stated that progression of the residuals had occured over the 10 years since intial onset and neew defiencies had occured as well as a significate drop in i.q. status from 1991-2000 from 125 to 99. guess already answere question 2 question 3 in 2000 my neurologist and myself some people may remeber this we were investagating this very question spoke with dr's from the cdc and the center's of rare diseases is there is no information avaiable and there has never been a study done of residuals or of encephalitis survivors. they have gone on the premise that once it is gone it is gone. Annette *** OK, so we know we have a pretty good basis to believe that the "Residual damage" progresses. But the actual state of encephalitis does not progress once resolved? And as for reoccurrence? we can get encephalitis "again" from a reoccurrence of the original, or a new cause. Like a "Reoccurrence of Herpes" can lead to encephalitis again, but the encephalitis does not just come back? And, residuals come and go in intensity due to external stresses? but not from relapsing of the encephalitis? That's my buy of the situation as our week on this topic is soon to close. (dannon) *** Im in aggreance with dannon over his conclusions. Very well put mate!! Von.  *** Hiya: Think your missing something here. There has NEVER been a case study doneon the after effects of people that have survived. The closet is the outbreak in the 40's with the people becoming catatonic years later depicted in the movie "awakenings". Now if your asking personal opionons here's mine: I don't believe the medical litature that states once the swelling goes it is gone. I believe the virus lives deep in the brain and something triggers it to activate triggers different for everyone. But I also believe it shifts around in there causing small amounts of swelling at different times causing us to not feel well or whatever. This would also explain why unlike other head injuries our symptoms are not constant and change day by day minuet by minuet second by second.That is the biggest diference between other types of head injuries and encephalitis survivors. It would also explain why the disease seems to "progress" and people have more problems later on. because every time the swelling hits an area it leaves behind little damaged areas after a time the area would get bigger if it continues to be hit. This Is ONLY MY PERSONAL OPIONON on the whole thing there is no case studies to compare it to. Annette *** Annette, Your personal opinion is as valid as any of ours, since I spent as much time in medical school as you did (zero), and we know there are viruses like herpes and chickenpox that retreat and remain on nerves for our entire lives. But what you are saying is the virus comes out and causes trouble again. And when it does that, it causes new encephalitis? or do you believe the encephalitis doesn't quite go away and is constant? I was just looking for an accepted medical recognition of relapse or progression of ongoing encephalitis. (dannon) *** Hiya first off yes have had medical training was aand still am a licensed physical therapist who specialized in neurology.So that is wherethe medical part comes in and knowing what the "books" says. believe the virus stays, There is NO accepted medical recognition impossible to find that. Annette Hiya again dannon if you care to you may email me at dapeaton@mediaone.net and i will give you my license numbers to check. Licenses numbers cause i'm licensed in two states Annette *** Annette, I'm curious, are you saying that you studied this in medical school and have/have had access to scientific information pertaining to this? Because that would be great if we had some concrete information based on real science. (dannon) *** Hiya yes had to take the standard med courses as well as p.t.courses. Pathology of diseases and when i didn't know a disease did what every other medical professional does looked it up had to keep all my books too. Dannon I'm not sure what type of information your looking for but my guess is reguarding after affects not going to find any. Think most of us have looked for it at one time or another. Annette *** Hi My son and I have just been informed that he is still suffering the effects of E after 8 years, we assumed that as he relearned his skills and was reasonably OK that we had said goodbye to E. Last 12 months extreeme fatigue and severe weight loss and passing out 3 times !!!!!, our GP has me down as a nutter I am sure, but at last refered us to someone, who said E is responsible for this. New to this site so please be patient with me, I have a lot to learn Jackie (Queensbury) | |
