ENCEPHALITIS CASES

Encephalitis Cases

Nicole

Nicole is 2.4 years old. The dark days we are in started in June of 2004. During the later part of the month, Nicole would point to her eye and say "eye'" trying to tell us something in her eye was bothering her. My wife and I would look at it and we thought she got sand in it from her sand box as she loved to play in it so we thought little of it. Other than that she was normal, healthy very active and independent little doll. Although she could not read she always knew when we passed a Duncan Donuts. I would bring donuts home as surprise desert for the kids, as she also has an older brother, 11 and sister, 5 who also happen to love donuts. She would yell when she saw the donut box. "Odough, yeah Odough!" Since she could not say donut she would say "Odough" is was so cute we all would laugh.

Then the week from hell began. On June 24-25, she was not herself, irritable cranky and would not sleep. We would say family rosaries at night and she and her sister would pass out the rosaries and she would try to say them with us and loved being a "big girl" who got to pass them out, but these two nights she did not even want to do it, and she would fuss and cry. We finally got her to sleep on Friday the 25th after a very cranky day, and my wife felt we should take her to the doctors and check her out, my wife being a nurse thought she was ill and did not want to take a chance her having a virus going undetected and have it nipped in the bud if something was starting. So we took her the next morning, 10:00 am and Nicole was not a happy camper, she hated going to the doctors but the doctors checked her out and said she had a slight ear infection and prescribed Omnicef to fight it. Nicole had a temperature. 101, that morning, so we gave her a dose of the Antibiotic and in the afternoon she still had it so we gave her Tylenol to bring it down.

The rest of us went to church and about half way through 5:00 mass, our neighbor came in and got us. Nicole had had gone in to convulsions and she was rushed to St. Joseph's Hospital. She had been convulsing from the time my in-laws called 911 to her transport, all told about 25 minutes and no matter what was done they would not stop. She was admitted with a fever of 106.8 and her white blood cell count was through the roof. We went to the hospital and our neighbor took our kids home to be with my mother in-law, my father in-law went with Nicole to the hospital in the ambulance. When we got there, she was in the ER with a trauma team trying to stop the convulsions and vomiting and to make sure she got oxygen. After 3 hours being worked on by a team of at least 7 people, she was stabilized and was sent to the Pediatric Intensive care unit, (PICU). Nicole needed to be on a ventilator and sedated. The next day we almost lost her, the evening before was a roller coaster ride with all her vitals all over the map. Sunday the 27th, she was not breathing with the ventilator any more, they had hook up Nitrox to allow the Oxygen to be absorbed in to the blood. While in the ER she aspirated some vomit so she got Aspiration Pneumonia in both lungs which caused the breathing problems. The doctor determined she had Encephalitis and put her on IV's to kill Meningitis, Herpes and Zoster-Varicella Encephalitis, and a host of other drugs to stop seizures. Monday the 28th, we almost lost her again; they had to increase the Nitrox to full strength to the oxygen levels back both times she was almost suffocating from the fluid in her little lungs. They finally put her on a paralytic to ensure the Nitrox would work. Her blood levels went down to dangerously low levels due to the drugs and numerous blood tests.

Wednesday the 30th, she stabilized some what but was monitored closely. She stayed in the paralyzed state from the drug until July 7th or so. She had an MRI and EEG which all came back normal; all the blood tests came back negative for all the common causes of Encephalitis, West Niles, St. Louis, Eastern Equine, Western Equine, La Crosse and Meningitis. Her two spinal taps were clear as a bell, she was tested for metals, poisons, and her blood work was sent to the CDC in Atlanta and the various state infectious disease centers. All negative. The doctors have never found the cause or the type of virus that has infected her. She was taken off the drugs and anti-biotics around 7/10. On 7/14, she was transferred to another hospital for therapy. She has been in a coma ever since. She was in a stage 1 coma for about 2 weeks, totally catatonic, now she is in stage 2 coma, doll eyes although her pupils now move in and out with light, she smells inconsistently but can hear physically. She does not speak but "silent screams" and cries; however, this is much less than before. I understand she is one of the few people who go in to this type of coma from Encephalitis. She will be getting another MRI September 7th to see what damage may have occurred, I would say level 2 is an improvement from level 1, my hope is in 4 weeks she will be at level 3, where she can see, have some controlled movement and can eat through her mouth. She has contracted slight Pneumonia again because her feeding tube became dislodged but it is being dealt with by an anti-biotic. Can anyone who had Encephalitis like this tell me anything else? How long could the Coma last, what after effects they may have had, any treatment to bring her out of this. Anything else I can do for her? We are distraught at her suffering and feel helpless so any information would be greatly appreciated for this "Unknown Virus". The picture attached is her on her 2nd Birthday before the illness.

Mike - Nicole's Dad
Wayne, New Jersey, U.S.A.

Posted: Sept 27, 2004

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