Encephalitis Cases

Emma        
  My daughter Emma, contracted encephalitis on 4/1/98. Out of the blue she had an onset of seizures, but no fever, or any other symptoms. We had all had our run of colds in February and March of last year but no unusual illnesses otherwise. Emma was hospitalized and her tests, MRI, CT scan, spinal tap, EEG, were all pretty normal, with only a few extra white blood cells. The last MRI showed some atrophy but part of that was due to the round of steroids they had given her. Emma was in the hospital for 2 1/2 weeks and she left the hospital with a movement disorder, involuntary movement, of her right arm and leg. The closest diagnosis was that a virus invaded the central nervous system causing severe Encephalopathy

When Emma came home she weighed only 23 lbs., she had lost 6 pounds, ate with great difficulty and could not walk, talk, smile or even cry. She was completely helpless, an infant. That was the end of April 1998. VERY GRADUALLY, she began to respond and gain strength. Emma had been such an active, verbal, outgoing child until the illness hit her at 2 years 3 months. It was very hard to see her, suddenly, in such an infantile state. Heart wrenching. She started receiving PT, OT and ST after her involuntary movements subsided by early June. By the end of June she started walking with assistance and smiling and laughing. She could vocalize but could not speak words. By September she was saying about 3 words and generalizing speech, using one word for many things. The evaluation team from our county thought in September that Emma would need the help of a speaking device. But by December Emma was saying just about anything we taught her. Her articulation needs to be fine-tuned but she talks as well as many of her peers. Sometimes she'll get stuck on a word, but she can overcome that with therapy. Emma also has started using her right arm and hand more and more. She may have some residual weakness long term, but we continue to see improvements.

Emma still has OT and ST once a week and a consultation with a PT once a month. An early childhood interventist helps Emma 2 hours a week at her preschool. Cognitively Emma is fine and for the most part the same child she was before the illness. We're keeping close tabs on any signs of learning disabilities. She has been seizure free since last April but has been prescribed 250mg of depakote, 2 1/2 ccs twice a day, until she has been seizure free for a year. By the way, Emma had a bad time with Tegritol and exhibited extreme agitation and bruising. We've seen a positive difference with the depakote. Every child is different.

We count our blessings and thank God for the improvements in Emma. From what I've read recovery rates vary from post viral encephalopathy but the chances for improvement are great. The last 10 months have felt like an eternity, but I know that others are having to be much more patient in holding it together.

Sarah
Raleigh, NC, U.S.A.
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Posted: 2001 		  adults cases

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