Encephalitis Cases
Daulton
Daulton was 7 1/2 months old when one night he fell a sleep playing on the floor a first for him. Later in the middle of the night he would sit up and get sick not making any sound then go back to sleep. When morning came I couldn't wake him up. Scary because usually he woke easily, I told his dad that I was going to stay home from work and take Daulton to the doctor. By the time we went to the doctors office Daulton had woke up and playing as usual. So when the doctor saw him I believe he thought here they are again. We seemed to be there an awful lot due to ear infections since Daulton was 3 months old. He was on a maintenance dose of antibiotics at this point waiting for an appointment with an ear specialist. The doctor said it sounded like stomach virus, try to keep to a regular diet and home we went. The rest of the day he seemed fine. Tuesday July 26/1993
He got sick a small amount, having missed a day of work already; I took him to the sitter. I told her he had gotten sick, that if he got sick later to call me. Never did I expect the call that came. That Daulton was being rushed to the emergency room. I think I feel apart right then. I was given a ride to the hospital, to find out we had beat the ambulance there. When in the emergency room I heard over the scanner he his breathing on his own. They then took me to wait in waiting area. It seemed forever before anyone could tell me what was going on and the first person to come talk to me was the hospital chaplain, not a good feeling. I was then told to prepare myself to see Daulton that he had a lot of tubes and monitors on him. He was breathing on his own but very dehydrated and had IV's going into his bone marrow. I was just glad to see him. He spent about 4 hours in emergency care then taken to the ward to await a helicopter to take him to Pittsburgh Children's Hospital. By the time I could get there they had taken him from regular room to ICU. They detected seizures. He stayed in ICU for 3 days, getting test after test done. MRI's, spinal tapes, EEG's, and countless blood tests. When they put Daulton in a regular ward he was in a single room with a infectious disease sign. This whole time he just seemed to lie there not seeing us or hearing us. Still no one could tell us what was wrong. Just more tests. What we did know was that he had abnormal brain waves, had lost all his reflexes to catch himself, and did not respond to movement in front of his eyes or bells rung in his ears, that it was possible that he would never walk, talk see or hear. I don't know if it was denial or I truly believed he would learn to do these things because the one thing he could do when sat up he would eat crackers and cheese curl and hold his own bottle. This was about a week and 1/2 into his stay. I was asked if I would take him to a conference that was being held for him by neurologist. (Little did I know there would be aproximately 25 there). I heard more then I wanted to hear about all that was really going on. Only one of them thought they had seen any thing like his case. Still no word of what they thought it was. We started hearing different names from different doctors that I started asking each one what they thought. 2 1/2 weeks later when he was discharged they said possible viral encephalitis couldn't be 100% sure. Just before he came home he seemed to get excited by bright lights and was responding to sound. He came home to in-home physical therapy 5 days a week to relearn reflexes and to crawl and cruise furniture. Also was in early intervention program to help him 2 days a week and has been in learning programs since then. He still has a delay in most areas, speech being the one you notice most but improving daily. He has had surgery to correct crossed eyes and will need another if we can ever figure out how to keep a patch on him to help his lazy eye. Hyperactive that should be capital letters. People ask how do we keep up, you have to! I believe this is one of the reasons that he has come so far there's no way he could ever sit still and not check everything out. Behavior problems he is a pincher, biter, throws things not a real good scene when he gets mad. Counselors have told us they're not sure what to tell us. In a lot of ways this is getting better but still needs a lot of work. Daulton's delays are of mixed age levels, leaving a lot of frustration on his part and ours. Daulton is now 6. He's made it along way from what they thought. He's walking, running, talking and seeing. Keeping mom and dad very busy trying to keep up. He has a real good sense of humor and helps us laugh when things seem the worst. (He uses this a lot when in he's in trouble). He loves anything electronical (button & knobs) Music being the number one thing, not sure how many cassette players we've gone though now it's CD's that he likes. Books and catalogs have to have a lot of them around. He can't read but jabbers like he is reading, usually has to have one to sleep with. I feel that we've been blessed, that he's come so far. I know that we are lucking for having him with us. I just hope that some day all that he has been though will have a meaning and help others. Bev
Pennsylvania, U.S.A.
Posted: September 29, 2000
