ENCEPHALITIS CASES

Encephalitis Cases

Cody

My name is Robin and my son, Cody was 9 years old. Our nightmare began on Friday, June 16, 2000. Cody became sick on Saturday, June 10th, 2000. He woke up and was running a low fever and felt sick to his stomach. By that afternoon, his fever had jumped up to 104. I called his pediatrician and was told to give him Motrin and plenty of fluids. We were told he probably had a virus and to just watch him and if he wasn't feeling better to bring him in on Monday, June 12th. Monday came and Cody was still not feeling any better however his fever and gone done to around 100. We took him to see his doctor and he was checked over thoroughly and given a blood test. The doctor told us his white cell count was a little high but that was to be expected with a virus. We were told he should be feeling better in 3 - 4 days. If he wasn't better by Thursday, we were to bring him back in. We have 3 kids, Samantha 12, Cody 9, and Jacob 4. We had been through this plenty of times with them so we were no hat concerned that it could be anything really serious. They all usually felt better after a few days. And true to past experience, Cody was better on Wednesday.

Thursday, June 15th was the last day of school and Cody wanted to go. Cody loved school. He was fine on Wednesday so we didn't see a problem with him going back on Thursday. He went to school and came home feeling fine. Cody's friend Eric was leaving the next day to go and spend the summer with his father. Before he left he wanted Cody and they're other friend Robbie to go to the movies and out to eat and then spend the night with him before he left. Cody had been fine for 2 days so we said no problem. He left with his friends to go to Eric's house, which is only a couple of houses down from ours. At about 10:30pm, we were getting ready for bed when the doorbell rang. Little did we know that our lives were about to change forever.

We opened the door and there was Eric and Robbie telling us that we needed to come and check on Cody. Eric's Mom had sent the boys to come and get us. They said Cody had fallen asleep watching TV but now he was acting weird and that his eyes were open but that he wouldn't respond to them. My husband Art, ran down to get Cody while I waited with our 4 yr.old Jacob. Art came back carrying Cody and laid him on the couch. Cody had come around by then and said he didn't remember anything but that he was just really tired.

We immediately called his pediatrician and told her what had happened. She asked us if he was now responding to us and then asked us to tell Cody to get up and go to the bathroom. She wanted to see if he could follow & understand a simple command. We told Cody and he just laughed at us but did as we asked him to do with no problem. The doctor said that he should be fine and that she thought that he must have just overdid it that day after just getting over his virus. She told us to bring him in to the office the next day for some blood work just to be sure. She also said to watch him closely and that if he started to vomit or had any other problems to call her back and she would meet us at the Children's Hospital.

Well, we no sooner hung up the phone when Cody's eyes opened wide and rolled back and to the left and then he was vomiting, convulsing and wetting himself all at the same time. I had never seen anyone have a seizure before and I just lost it. Luckily my husband was able to hold it together. He told me to call 911, which I did but I had to give him the phone because I couldn't even tell them what was happening. Luckily for us, our neighbor is a pediatric nurse and she came over to help us. She got Cody onto the floor and laid him down and was checking him over when the paramedic's arrived. She told them what had happened and said that he was now in a "post-ictal" state. Little did we know that that would be the first of many new terms that we would learn over the next few weeks.

Cody was loaded into the ambulance and I rode with him while Art followed us in our car. We were taken to the nearest hospital. We wanted to go straight to the Children's Hospital but were unable to at the time because there was a Festival going on at the waterfront and with the traffic, we didn't know how long it would take us to get there. So we went to Chesapeake General Hospital so they could try and stabilize Cody until he could be transferred. He wasn't at the hospital long when he had another seizure. He was given med's to try and stop the seizures and they ordered a CAT Scan, which came back normal. I believe Cody had 2 more seizures before the trauma team from Children's Hospital of the King's Daughters (CHKD) were able to come and pick him up to be transferred. So far, none of the med's had stopped the seizures.

At CHKD, we were met by his pediatrician. They gave him a MRI, CAT Scan, and an EEG and still everything came back normal. They even did a drug screen to make sure he hadn't taken anything. He also had numerous blood tests. Still everything was normal. No one seemed to know what was causing this to happen. He was admitted to CHKD so they could closely monitor Cody and try and find the right med's to stop the seizures. They did a spinal tap to rule out meningitis but everything was again normal. They even sent the fluid out to be DNA tested to see if they could try and pinpoint what virus had caused this to happen. Those test couldn't tell us anything either. HOW FRUSTRATED WE WERE!!!

We were told by the neurologist that they thought Cody had Encephalitis. He said that the virus that Cody had had simply traveled to his brain and that was what was causing the seizures. The neurologist told us that it was just a "freak" thing that happens and that Cody probably had a better chance of winning the lottery than this happening to him. He was given another MRI and several more EEG's while he was in the hospital and they all looked normal. The diagnosis we were given was Acute Viral Encephalitis. Cody was released from the hospital 7 days later with med's to control his seizures or so we thought. He was taking Trileptal & Phenobarbital at the time.

Well, we were not home 24 hours when Cody had to be rushed back to CHKD because he was seizing again and this time he was awake when it happened. The other seizures up until that point had been while he was asleep. He was admitted again and stayed another 7 days. He had so many MRI's, EEG's and blood tests that we all lost count. He was released again; this time with the med's Trileptal, Phenobarbital and Depakote. Since then his med's have changed and been adjusted as needed to help control the seizures. The longest Cody has gone without a seizure is 4 weeks but that only happened 1 time so far. The trileptal was stopped and Topamax was added. He eventually had to be taken off the Topamax because it had started to make him VERY CLOUDY with his actions and thinking. Cody's neurologist, Dr. Frank, has just started him in a study group for the drug Zonisamide, Brand name: Zonegran. He has been on a very low dose for 2 weeks and is due to eventually titrate up to 100mg to 200mg per day. We hope this drug will help but the past 2 weeks he has had 4 seizures. Dr. Frank at first thought that maybe after about 6 months that the seizures would have stopped once the brain had had time to recover but now he doesn't believe that will happen. He hopes to find the right med's for Cody to CONTROL the seizures consistently. He has also mentioned that further down the road maybe 18 months, if we still can't find the med's to help Cody's seizures we may want to consider surgery. The numerous EEG'S have now shown that the irregular activity in Cody's brain while he is having a seizure is coming from the temporal/parietal lobe. The type of seizures he has are partial complex seizures.

Cody lost a lot of his short-term memory when he got out of the hospital. Before encephalitis, Cody was in a Gifted & Talented Program at his school and was also an honor roll student who LOVED to go to school. Now Cody has a very difficult time just barely passing his classes and every morning is a struggle to get him to go to school.

This has been extremely hard on Cody emotionally. He's always saying he's stupid now and that he HATES school. He gets very upset that he can't do as much as he used to be able to do. We hate to let him out of our sight for very long because we are afraid that he might have a seizure. He can't understand why he can't spend the night at his friend's house. We do let him stay the night at my sister's but we feel that letting him stay at his friend's house is to much responsibility to put on their parents. I think our family is adjusting to this nightmare rather well now but boy was it tough road to travel to get here. It can still be very trying with Cody's many mood swings and not knowing when or how bad the next seizure will be. We thank God for Cody just being here with us and we feel blessed that he has come as far as he has. We are extremely lucky to have had great doctors and a wonderful Children's Hospital to help us and who continue to help us with Cody's recovery. We are also very thankful for our family and friends who have all been there whenever we needed them without even having to ask.

Thank you for taking the time to read Cody's story. I welcome any email from people who have experienced this terrible illness so that maybe we could help each other out by sharing our experiences.

Robin and Art
Virginia, U.S.A.

Posted: January 19, 2001

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