Encephalitis Cases
Dominick
The Tuesday before, I picked him up at pre-school and his teacher said that he looked tired and was not as enthusiastic as usual. His eyes were also a little puffy. We both agreed that it was probably just allergies. On the way home I stopped at the drug store for some allergy medicine. Dominick took his dose and then fell asleep on the couch for a while. I didn't find this unusual since allergy medicine can do that to you.
The rest of the day went on as usual. The next day, Wednesday, I would usually work, but when Dominick woke up he seemed kind of out of it and had a fever so I decided to stay home and take him to the doctor. All the doctor found was that he had a swollen gland and sent us home with a prescription for an antibiotic. Again, Dominick took a nap that afternoon (he never naps). Later that night we put the boys to bed and during the night Dom woke up with a fever of 102.5. I gave him some Advil and sent him back to sleep. Then I noticed that he was grinding his teeth, something that he had been doing for the past week or so. I still didn't give it much thought though.
Thursday morning he woke up for a little while but basically slept the whole morning away. Around 1:00 that afternoon he woke up and seemed perfectly fine. No fever, and was looking to eat and play. 2 hours later though, he was back asleep. I just thought he had a bad case of the flu so he needed all this sleep. That night, however, he woke up vomiting and feverish again. I gave him Advil again which he promptly threw up. He did fall asleep again, but was up within an hour or so saying he had to go to the bathroom. He climbed out of his bed and fell to the floor. I really just thought that he was weak from being sick and not being up that much. I picked him up and carried him to the bathroom, put him down in front of the toilet and he fell down again. This was when I started to get a little scared, but still assumed that this "flu" knocked him out. I got him back into bed and the next morning he wouldn't even get out of bed saying he just wanted to sleep. Then I knew this was serious.
We brought him right to the doctor and after examining him, the doctor told us he suspected meningitis and we had to take him immediately to the emergency room at Long Island Jewish Hospital and not to wait or go home first. We got him to the E.R. where they put him on I.V. fluids right away and told us they needed to do a spinal tap. We were there for hours before they told us it looked like meningitis and he had to be admitted into isolation until they could determine whether it was bacterial or viral. The next morning a doctor from infectious diseases informed me that he had meningele encephalitis and that they would be doing an MRI and blood tests to try to determine the cause. They were never able to pin-point the exact cause but of all the tests the only one he was positive for was the Epstein Barr virus. All I remember was feeling like they were telling me my son, my baby, was going to die. I really knew nothing about encephalitis other than that people recently died because of it. It was like living a nightmare watching my little boy fade way, unable to move on his own or speak. He had to wear diapers again. I couldn't understand why this was happening to us. I already had a child with a birth defect (spina bifida) who needed me and I couldn't be there for him now and I was pregnant with our 3rd child. I definitely didn't need this kind of stress.
Dominick spent 3 weeks and Schneider Children's Hospital on continuous meds. During this time, he suffered 1 minor seizure (thank god only minor) and was severely burned when his I.V. infiltrated (this also turned out fine). After his stay there he was transferred to St. Charles Rehabilitation Center in Port Jefferson, NY. This was where he stared to come around again. Slowly but surely he began to walk, then miraculously started talking when a friend of mine brought her son to visit. He kept covering his eyes while looking at the little boy and then uncovering them. Then all of a sudden he faintly said "peek-a-boo." We all started cheering and crying. It was all uphill from there. He had extensive PT and OT for three and a half weeks.
On June 28, 2000 our little boy came home. This was the best thing for him. He continued PT and OT at home for a very short period of time but just being in his own environment and getting back to his usual routine was the best therapy for him.
Now almost 8 months later he is 100% back to normal. Well maybe a little more hyper than before, but that could really just be his age. He is in school (Pre-K) and does very well. He loves his new baby sister (born Oct. 20) and enjoys playing and fighting with his 2 1/2 year old brother so that just proves he's right back where he was before.
We are so thankful to all the nurses and doctors who helped us through this ordeal and even more thankful to have Dominick home, healthy, and safe. Something like this happens and you realize that children are a gift from God and that you should never miss an opportunity to let them know that they are loved. Even when they make you crazy. Robyn
Lindenhurst, New York, U.S.A.
Posted: January 4, 2001
