ENCEPHALITIS CASES

Encephalitis Cases

Austin

My name is Rosa and I wanted to tell my son's story about his fight with Encephalitis.

My five-year-old son Austin became ill on May 2, 2002 with what we thought was a virus of some kind. The previous night he had run a fever and had started to complain about his head and his neck. I became alarmed and decided to take him to quick care. I told the doctor of my concerns and he said he understood that I was worried about Meningitis, but that he didn't believe that he had it (even with a stiff neck). He said even if it was it was viral and nothing can be done for Viral Meningitis and it had to run its course. He said to go home and give him Motrin and Tylenol for the fever and return in two days if he hadn't improved.

Well, he struggled to sleep all that night and when he got up that next morning he was screaming about his head and his back. I was at work and when I called to check on him, my husband and I decided that he needed to go to the emergency room. We took him to the closest one to us, Colombia Mountainview Hospital. They were very good about seeing him quickly. The ER doctor said he suspected Meningitis and wanted to do a spinal tap. We agreed and it was done. He came back with a positive tap, but they were pretty sure it was viral. To be safe they decided to transport him to Sunrise Children's Hospital for treatment for bacterial as the cultures take a few days to come back. This was the 3rd of May on a Friday. We went by ambulance to the Children's Hospital and he was put in isolation to safeguard if it were by some chance bacterial. They immediately put him on antibiotics and fluids for dehydration.

Saturday and Sunday were pretty uneventful. Austin ate and drank and played video games. Monday came and some new things began to happen. I noticed Austin staring off into space. It was like he was and wasn't there. Also when he got up to walk, he walked as if drunk. I voiced my concerns to his doctor, but they thought that he was just having trouble from being sick and in bed all weekend. In fact they were talking about sending us home that night. I wasn't satisfied and kept telling them that something was wrong with him. As the day wore on it became more noticeable his changes and by that night he was screaming, clenching his teeth and having what we thought were severe seizures. He was unable to talk to us and was in an altered state of mind. The doctors called up to the PICU and the doctor came down from there. They took one look at him and sent him right up to the PICU.

He was started an Ativan and then we were told that he probably had Encephalitis, but an MRI would need to be done to confirm it. An EEG was also ordered to check his brain waves and see if he was having seizures. The MRI was done the next morning and it showed some lesions and swelling in the basal ganglia and the thalamus. This brought on the neurologist and a heightened concern due to the location of the swelling. They said that generally Encephalitis attacks the frontal lobes of the cerebellum and Austin's was concentrated on the internal part of the brain. He was on so many drugs in PICU that I can't even remember them all, but he was able to talk a little and respond a little. Also the doctors had come to the conclusion from the EEG that he had not had any full-blown seizures and that it was tremors and they had improved with the medications. He spent three days in PICU and was brought back down to the regular floor, as he seemed to have improved a little. They had started occupational and physical therapy and he was responding to them. We thought the worst was over.

After he went to the regular floor his tremors began to worsen again and he was in a conscious coma. He no longer responded to us and had lost all of his faculties. This began our next twenty-five days of a nightmare that seemed like it was never going to end. Austin was just lying there unable to talk, move, eat, or sleep. He had round the clock Ativan and Cloral Hydrate to keep him calm and only then was when he could rest. He was in a constant state of agitation and shaking. During this time the doctors had started him on Methadone for pain and tremors, Valium for agitation and Dilantin for his brain wave spiking. After these meds were started he began to calm down more and rest more. At this point an infectious disease doctor was brought in and he suggested a treatment called AVIG, which was a blood antibody therapy. He believed that the Encephalitis was ADEM and this was effective in fighting this form. The infectious disease doctor also consulted with the neurologist and they started him on heavy doses of steroids to help reduce the swelling in his brain. Neither of these had any effect. They decided that he needed an ng-tube to get some nutrition and put it in his nose for feedings. After about four or five days into this they repeated the MRI and the EEG. The EEG showed more spiking, but not any seizures and the MRI showed the swelling had grown to the complete basal ganglia and still a part of the thalamus. They explained that this was the part of the brain that handled movement, speech, body temperature, emotions and temperament and that was why Austin was so agitated and could not speak or move. We were devastated that he could stay like this for quite a while and they were unsure what if anything he would get back.

Finally after twenty-two days of nothing he began to come around. The therapists kept working with him and started to do more as he came out of it. It took several days but he had started to get in a chair and have some upper body control. He was still unable to eat and the doctors called in a gastroenterologist and suggested a g-tube for his belly and we agreed. He had that done on May 27 and seemed to tolerate it well. He finally improved enough that they let us take him home on the 6th of June and it has been uphill from there. He left the hospital unable to walk, eat, talk, sit up, roll over and was still in diapers. In a matter of days home he began to slowly speak, sit up, roll over and eventually walk. The eating has become better, but not enough to sustain him alone. He still has not had any seizures, but is still on Dilantin and it seems to still help him. He continues on Methadone, Valium, Zantac, Cloral Hydrate and Benedryl. Some of these are being slowly reduced and he is being weaned off of some of the harsher medications. It has been truly a miracle since he has been home and he is doing more now than the doctors said he would do in a year. The final diagnosis was Viral Meningo Encephalitis and they had only found one virus in his system of which they cannot be certain it was the one that started it. We are truly blessed to still have him and see improvement everyday. I only hope that one day there is a treatment developed for his horrible disease and that it will save other families from going through what we have and what our son had to go through. It is still going to be a long road, but we will eventually get through it.

Thanks for listening,

Rosa
Nevada, U.S.A.

Posted: August 3, 2002

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