Encephalitis Cases

Brian           
  At first Brian was very sick with what we thought was the flu. He had a fever of about 103 and had diarrhea and vomiting. The rest of the house got a minor touch of the bug, a slight flu, but Brian's wouldn't go away. I called the advice nurse three different times and was told to wait it out that it was just a virus. Brian was complaining of headaches and was VERY lethargic and completely exhausted. I spent almost two weeks sleeping in his bed with him and helping him throughout the night. Brian seemed to get better for a few days and then was hit with "it" again for another 10 days. On the eighth day he started having involuntary muscle movements. When I spoke to his pediatrician about this his Doctor checked him for strep throat. When Brian's test came up negative he came to the inaccurate conclusion that Brian had a childhood tick. After a visit to the ER, two pediatricians, two Pediatric Neurologists, an EEG, and an MRI, I finally found a Pediatric Neurologist who I trusted and really took Brian's symptoms seriously. It has been a fight to get the help my son needs. At times it feels as though I am treading water with my toes while I am trying to hold my son up above the water.

Brian's tolerance now for discomfort emotionally and physically is very low. He is tired most of the time and cannot play more than a quarter of a soccer game. Brian's physical stamina and emotional stamina is about 60% of what it used to be. The doctor's say only time will tell from here on out.

Brian started sleeping on his own again about two weeks ago after we put him on a mild sedative at night to help him sleep and to help with the muscle twitches that he now has. These I'm sure really bother him when he is lying there at night looking up at his ceiling.

Brian is currently undergoing testing for seizures and will most likely start medication on Monday once the doctor reviews his EEG and the videotape that I brought in for him.

The hardest point at this time is the lack of support that we are getting, we are however lucky to have friends in the area who are like family and a few relatives who live far away who are just as concerned. It is as though people aren't sure what to say or do......... The other hard part is that when people see Brian and don't spend a whole day with him he "looks" fine. This is difficult because although he looks fine on the outside he falls apart so easily and can only go for a few hours at a time.

Thanks for being here. We love you!

Rowena, Mom, Jim, Dad, Madison, sister
Vancouver, WA. U.S.A.
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Posted: April 26, 2002 		  adults cases

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