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Anyone here ever get an exact cause of what triggered their Encephalitis

Nubbsy
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I was talking to some other parents over the weekend and was intrigued to find out some of the causes of their child's diagnosis, a few were because of severe problems with their immune system and some others had issues with their spleens etc.etc. Our doctors told us we could not get a definitive cause unless a brain bioposy was performed and they strongly suggested that was not necessary. So I am wondering if anyone every got a reason for what triggered or caused their encephalitis. Thanks

Explore topics in this discussion:

Cancer Meningitis Incontinence Lyme disease Seizures Fever Tetanus Breast cancer Herpes simplex Autism Mumps Memory Encephalitis Acyclovir

32 replies

MichelleN

I have HE & my family was told it was probably from the vaccination from when I was in the Army since I didn't have chicken pox when I was a kid. It was years after I got the vaccination, but I've been told that it sometimes lies dormant for awhile.

Michelle

russel

before my daughter got her hse she was suffering from primary complex, she was two months into her medication for primary complex when her e arises

her doctors doesn't want to connect her primary complex or her meds as the ones that triggers her e

given the situation, i really can't think otherwise

my daughter is now seven, sadly she was badly beaten by her e she is now on pvs for 10 months

jerseagal

I had Eastern Equine E. The diagnosis was confirmed by a blood test many months post E looking for antibodies. New Jersey state health dept. required the test and CDC requested results.

IngridGuerci

I had herpes simplex encephalitis; I had the chicken pox as a little girl and once the virus is in your system it stays there; however, I know two people who are both born in 1971 and got their encephalitis from the DPT shot.

Ingrid

emckean

My E was from a mosquito bite. The doctors never shared what strain it was. I was a toddler when I became sick and I am now 35.
Ellen

Sandy_H

I was diagnosed with HSVE - Herpes Simplex Viral Encephalitis in 1994. My Neurologist explained to us this is the virus that causes cold sores and it is airborne. He said we all breathe it in everyday. They say they have no idea how it gets to the brain !
A little scary to think that I just breathed in a virus that almost killed me.
Cheers Sandy

rockstargrl

My daughter got E from a dirty mosquito in CO.

jerseagal

My EEE was from a mosquito bite as well. I was kayaking the marshes in Southern Ocean County NJ. If it can be traced to a bite they should be able to tell by blood test for antibodies what virus it was.

Nubbsy

Thanks for all your replies. Since we do not know what caused DS's Encephalitis, I guess I am just trying to be on the lookout for things. I am also curious of how often a reoccurence of the disease has occured. I think I am more paranoid about that than anything.

jackieb1

My son got encephalitis from mono (Epstein Barr Virus). a blood test confirmed the EBV virus. The incident rate of EBV crossing the blood/brain barrier is 1 in 1 - 2 million mono cases, according to the docs I have spoken to. The encephalitis was diagnosed by an MRI.

DVirginia

My limited understanding of how the testing works is that the docs have to *guess* which virus they think you have. They send the blood out to be tested specifically for that virus. If it comes back positive, then you know. But, since there are so mnay different viruses that can cause it, the results often come back negative...sometimes because the docs just didn't test against the right virus/cause.

In my son's case, we knew it was viral because of his symptoms (fever, vomiting, etc.). His symptoms suggested HSE and he was treated with acyclovir even though the testing for HSE never came back positive. They said that because the hospital began treating him immediately with acyclovir and a range of anibiotics (and who knows what else), it may have interferred with the test result.

Months after being hospitalized, an MRI still showed some swelling in his brain and they went back and scoured old test results. They said it was also possible he had California E (which is a mosquito-based one). I guess it was one they had considered originally but ruled out. Apparently, it hangs in the system longer than HSE.

Anyway, no definitive answer. Now, it's just about figuring out how to deal with all the effects!

wmnels

My E was also from a mosquito bite. I believe it happened while mountain biking in the mountains of Southern California but that is only a guess.

dannon

Nubbsy,
did your daughter have Mumps, Chicken Pox, Scarlet Fever, the Flu or any illness shortly before, or during the encephalitis?

Sandy_H

My Neurologist said to diagnose the type and virus for encephalitis they look at the area of the brain infected as well. Each virus usually attacks a particular area of the brain. So they look at the symptoms, area of the brain and the results of the blood cultures and lumber puncture etc. He took an educated guess and diagnosed me correctly before the blood cultures came back. This quick action led to my full recovery.
Cheers Sandy

sinceage1

Mine came as I was given childhood vaccinations at age 1. When they gave me MMR vaccine, I had allergic reaction of encephalitis meningitis and tonic-clonic seizure.(grand mal) Being called "post viral," that's was just too young to be potentially fatal. Later, about 5-10 years ago, I was dx'ed with Aspergers Syndrome. So much for possible mercury/thimerosal studies in vaccines causing it when federal gov't. doesn't what liability(U.S. DHHS) for these millions of childern dx'ed with autism, huh.

Dan_

In my case, the doctors ruled out bacterial infection by putting me on basically every antibiotic they could find. After that, I was put on gancyclovir followed by acyclovir once they could get it; also IV Ig. During this time I was tested for every possible encephalitis causing viral infection they could test for. Just after most of the tests had come back (all negative), I began improving, so treatment was not altered.
It turns out all the tests would come back negative.

A bit frustrating.

Dan_

PS. If you're worried about re-occurrences, do some research on ADEM (acute disseminated encephalotmyelitis). It's an autoimmune form of E that rarely ends up acting a lot like MS when it recurs.

Nubbsy

Thanks Dan for the info. I have heard that mentioned to me before although I have never had much time to research it. Thanks again!!

Hughbetcha

Hello Nubbsy-

I got my e. as a complication of mumps, around age 4.

Mark

freedom2001

my son also had E at the age of 10 along with shingles in in l eye. the past 2 years have been very difficult all that we have been through, does your child cycle with diffrent syptoms, seems like thing are getting worse instead of better and can't seem to find anyone that had been through the simular thing. didn't seem to notice any changes the first year after having this. but going into the second year we notice alot of changes

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