Encephalitis Cases
Aidan
May 24 (Friday): took Aidan into see the pediatrician, they said he had a "summer virus" and to just wait it out; he slept all day.
May 25 (Saturday): Aidan slept all day, and would wake when the fever rose and would stay awake long enough to get Tylenol & Motrin down him. I called the nurse and she said the same as the doctor.
May 26 (Sunday): took Aidan into the after-hours clinic and saw a pediatrician, they ran a blood test to rule out bacterial infection (which they did), repeated previous statements regarding virus. By evening Aidan really be-came incoherent, he was fully potty trained and now we had to place him in diapers, had a very hard time waking him up. Called triage nurse twice and she stated the same as everyone else. She suggested we stop the meds just in case he was having a reaction to them. He had not had a fever since 8:30 p.m. She said no need to go to the ER.
May 27 (Monday): Took Aidan into the ER. He was completely incontinent, did not know who we were, would not stay awake, pretty much stopped talking. They took blood work, catscan, lumbar puncture (spinal tap), X-rays of chest and abdomen. Everything came back okay. He had stiffness in his neck and anywhere they touched him he said "ouch." He was admitted into Pediatric ICU that evening. They started him on IV drip and Acyclovir and rocephtin (spelling?), and did an EEG. The EEG was fine except it showed some slow back brain waves? His active heart rate was 60 (rather low for a child).
May 28 (Tuesday): continued same meds, active hear rate up to high 60s low 70s, another spinal tap, MRI, blood work for infectious diseases, and EKG. Spinal tap was clearer than one done in ER. MRI showed no swel-ling, lesions, tumor, etc. EKG looked normal. He stayed "awake" for 40 minutes. When asked, "Aidan where's Mommy?" he would look in my direction. Answered some questions with head nods.
May 29 (Wednesday): Stayed "awake" for close to 2 hours, continued same meds, active heart rate up to high 70s low 80s, said a few sentences, still answering some questions with head nods, could still look in my direction when asked.
May 30 (Thursday): same meds, active heart rate high 80s low 90s, another EEG (fine), during the EEG he seemed to snap to. The nurse was on top of him and he let out a shrill scream and his eyes began darting every-where like he was trying to figure out where he was and what was going on. He said a couple of sentences, could still look at me when asked to, we went on a wagon ride, and he walked (drunken gait). Thursday night we were moved to the floor. He smiled and laughed once at his sister. Rolled a car on the bed, ate solid food (would grab it with hands and slowly get it into his mouth) and drank from a sippy cup. Slept very well.
May 31 (Friday): Herpes encephalitis test came back negative, stopped all meds and IV (I do not remember when the rocephton - again spelling? - stopped), ate well, and walked better. Helped me decide what he wanted for lunch. Friday evening: began whining noise, began what looked like anxiety spells -- tightness of muscles, chewing on anything, panic look on face, eventually would start screaming. Seemed to notice us less.
June 1 (Saturday): Cycled between sleeping and "anxiety spells", began a repetitive na na na during spells, fine motor skills decreasing (having trouble putting food into mouth, not holding onto toys, not knowing who we were again, walking backwards and shuffling forwards, said one thing entire day. Evening: gave Aidan a sedative to help sleep. Gave again at 4 a.m.
June 2 (Sunday): did not know who we were, spells were almost constant, at one point I had to let the nurse hold him and I left the room, he was completely non-communicative, sleeping more, could not grab anything - binky, food, toys. Each spell would turn into a shrill scream. The only thing that seemed to calm him was walking but if someone came near he would have one. His neurologist game him Dilantin at 1p.m. He stopped having the "spells" and seemed to be able to focus better. He still has not spoke or communicated with head nods. Neurologist does not believe he is having seizures. Another EEG is scheduled for tomorrow. We are going to get a second opinion from Cook Children's Hospital in Fort Worth hopefully with a Dr. Kelfer. We should be transferring up there some time this week. They believe he has viral encephalitis but cannot give a definite diagnosis because certain tests came back fine (such as MRI).
Before this, Aidan was a highly intelligent 3 1/2 yr old. His gross and fine motor skills along with vocabulary were very advanced. He does have sensory integration dysfunction but was discharged from OT April 2001. I am looking for anything. Stories, suggestions, support, anything. My husband and I are terrified. We have a 5 1/2 yo daughter but she appears to be fine. Thanks for letting me unload and get his case out. Hopefully someone has some input. Amy
Texas, U.S.A.
Posted: September 6, 2009
