ENCEPHALITIS CASES

Encephalitis Cases

Jeffery

Hi my name is Crystal and I live in Topeka, KS. My son Jeffery was 10 years old when he was diagnosed with viral encephalitis. This all started around the end of September of 2001. Jeffery had some swelling on his jaw that was getting bigger and bigger by the day so I took him into the doctor to have it checked out. The doctor said after feeling on his face that is was an infection in his muscle and put him on antibiotics and sent him home. A week later on October 5th 2001, the swelling got worse and I called to have him seen again. This time they wanted me to take him to have a sonogram done on his face. When we were having the sonogram done the swelling was so bad that they wanted to do a CAT scan. About 30 minutes after getting home the doctor's office called and said that one of his glands were infected and he needed a massive dose of antibiotics and to go to the hospital so that they could put an IV in and he would have to have the antibiotics that night and on Saturday and Sunday and go back to the doctor on Monday. The next day Saturday October 6, 2001 Jeffery woke up and came into my room and said that he was still tired and he was going to go back to bed. This wasn't normal for Jeffery to do so I asked him if he was OK and he said that he was. Every once in a while I would go up to his room and check on him to make sure he was OK. He didn’t look very good and was just very tired and didn’t want to do much.

Early in the afternoon some friends of mine came over and were talking to Jeffery, and they asked me if he could go with them to get some lunch for everyone and at first I said no because I knew that he wasn't feeling well even though he said he was fine. I finally decided to let him go because everyone told me it might help him feel better so I gave in. About 30 minutes later they pulled up outside and started yelling get your mom and call 911 something is wrong with Jeffery. I ran out of the house and told them to put Jeffery in the car and we were going to take him to the hospital. On the way to hospital I kept trying to talk to him and he was unresponsive and wouldn't answer me. He just sat there and stared into space. When we got to the hospital there was an ambulance there and I yelled for them to help me and they grabbed him out of the car and ran him back to the emergency room. By that time he had stopped breathing and when they got oxygen to his brain he started seizing. They were giving his so many things to stop the seizures and nothing would work. After 45 minutes of not being able to stop the seizures they finally gave him something to paralyze him so that his muscles would stop contracting. They said that his brain was still seizing though. They told us that they weren't able to handle kids in such critical condition so they were flying him from Topeka to Kansas City to KU Medical Center where they were able to care for him better.

After the helicopter took off my husband, my other three children and myself got in the car and headed to Kansas City which is about an hour and a half away. When we got to the hospital they said he was in critical condition but they had stabilized him. I asked if he would make it and they weren't sure if he would. They started doing lots of tests to see if they could figure out what is wrong with him. They tested him for cat scratch fever, HIV, and did a spinal tap on him but all of that came back negative. They also tested him for herpes virus and that came back negative. They then did an MRI and an EEG and said that his brain had swelling and that his temporal lobes had been damaged and said that he had encephalitis. After about 4 days in the ICU he finally woke up. There were times when he couldn't remember my husband or myself. They had started him on Acyclovir the first day in the hospital. He was also started on dilantin for his seizures. He had a couple small seizures the next couple of days but hasn't had any since. After 6 days in ICU he was able to be put into a private room. They had him on four different antibiotics and we thought he would be able to go home on Wednesday October 17, but they decided that he needed to be treated for three weeks for the encephalitis and wanted to keep us there. We asked the doctors if he could be transferred back to Topeka since he was doing better and so on Thursday October 18 they transferred him back to Topeka. He has finished his treatment and was released on Saturday October 27 three weeks after the nightmare had started. He is still taking his dilantin and hasn't had any seizures but he does have some short term memory loss that the doctors say will get better with time. I think god every day for saving my son. He will have to be homed schooled for three months and then he should be able to go back to school. I feel very grateful to still have him with me and every day.

It is now March of 2006 and I have decided to update Jeffery’s story. Jeff just turned 15 on March 10. This October will be five years since the encephalitis. Jeffery still has many problems resulting from his encephalitis. His memory hasn’t gotten any better he really struggles in school trying to remember things. In middle school he had a teacher that really helped him out. Jeff would forget where his locker was or where the classrooms were and the school was really great with him. His teachers will tell me that one day he can do a paper in class but the next day they could give him the same paper and he would be lost not understanding how to do the work. He in now in his first year of high school and the school has gotten him a Para to help him out and get him from class to class.

About six months after being released from the hospital he started having seizures and to this day we have still not been able to get them under control. Some months are worse than others. We have tried many different medications and have even had a VNS implant which doesn’t seem to help very much. We just can’t seem to get the seizures under control. As of right now his is on Lamictal, Trileptal, and Keppra for the seizures and we also have him on Strattera and Adderal to try and help with his mood swings.

Jeffery has a hard time making friends now because he has bad mood swings. One minute he is the happiest person in the world. At 15 he still acts like a little kid. When he is in his good moods he is always wanting to kiss me or his dad and rub noses with us. We try and explain to him that it is not appropriate behavior for a 15 year old and he says that “you are my parents and I can be like that if I want.” At other times he gets mad and not just mad he goes from one extreme of being happy to the extreme of being furious. It doesn’t take much to make him angry either. Just saying something to him could set him off. He gets mad at me all the time and sometimes for things that I have no control over.

He can be very difficult to deal with but like my husband told me if we had the same problems that he had we would probably be like that also.

Thank you for taking the time to read my story.

Crystal
Topeka, KS, U.S.A.

Posted: December 2, 2001

[ADULTS]	[CHILDREN]	[HELP]	[SUBMIT STORY]	[EMAIL]	[HOME]