Encephalitis Cases
Jacqueline
After weeks in a hospital, total traumatisation, and being paralysed down the left hand side, Jacqueline had to relearn to move her head, her arm, her leg, then slowly to sit, to crawl, and to walk.
Jacqueline has just turned 8 years old and is as normal as can be. She is great at some things and less great at others. She has had intermittent physio and occupational therapy over the years to ensure her left side operates effectively as the right side, and with much effort has learnt all the normal things like riding a bike and a scooter, and yet breezes through languages and speech. Apart from a swimming teacher who thought she may have had a stroke because of her apparent one-sidedness in cold water, nobody would know that she had ever been ill, and we have not had the need to tell her teachers yet.
For all you parents out there, miracles can happen. Jacqueline is a miracle. My advice for any parent of a child with encephalitis; follow your instincts. Although you should listen to the doctors, you do not have to do all that they say as they really do not know everything about this disease, not even close. I remember after one particular MRI where they could not see anything, no problems in the brain and I said: “so that’s good, isn’t it?” and they said “your daughter is paralysed down one side, and we can’t see this in her brain using the best technology in the world, so no, we don’t think that is good”. As it turned out, the paralysis was temporary – which totally surprised everyone. Jacqueline was only released from hospital at my insistence (and at the suggestion of the hospital physiotherapist) against the advice of the entire medical team. While they wanted to watch her (she was a rare case) I wanted to get her away from her isolated room (she had been isolated for weeks as they never discovered which virus she started with, after testing her for thousands), and home again and onto a clean floor to learn to crawl again. At less than 2 years of age when it happened, she was totally traumatised by the hospital experience and at home she did not sleep for more than 2 hours each night for a week – hard to believe but totally true. It took so much of our own effort to get her to go back to the usual sleep patterns, and as none of the traumatologists or neurologists knew the answer, we went back to the old fashioned rules about getting your kids to sleep in desperation (let her cry for 2 mins, then go up, then a little bit longer, then go again, then a little longer). Hang in there parents. I sincerely hope this story helps someone, as other stories helped me at the time. Lisa Sennhauser-KellyZurich, Switzerland
Updated Dec 12, 2007 - Posted: May 3, 2002
