Encephalitis Cases
T.J.
One evening when I was visiting my brother and his wife, I noticed that T.J. would twitch his left arm periodically for a few minutes. I knew that babies could have twitches at times that were nothing, so I didn't think much of it at first. A little later in the evening I was holding him as he would twitch and I noticed that his heart was racing and then when he would stop twitching his heart rate would drop alarmingly low. I told them that my baby was having seizures and we needed to get to the hospital right away.
When we got to the hospital, I felt fortunate that I worked there and people knew me because when we walked in and I said my baby was having seizures, no one asked any questions. They took us straight to the exam room and the pediatric resident was with us immediately. TJ continued to have seizures through most of the night and in the early morning was taken for an EEG. When the results of that were available the doctor told me that T.J. most likely had herpes encephalitis and that if it were his child he would want him to be transferred to Columbus Children's Hospital. At this time my husband was in Texas in the Army Reserves. The nurse said she would get with the Red Cross to have him contacted so that he could get leave to come home.
After we were transferred, we spent 3 weeks in the neurology unit at Children's Hospital with T.J. receiving IV Acyclovir. It was so hard on his little veins that his IV had to be restarted almost daily. That was hard on him and I and his nurses. Luckily, with his seizures controlled and him eating well, even though he was lethargic we got to stay out of the ICU and I could be at his bedside all the time. None of the doctors talked to me about how serious his condition was until the day before we were discharged. I had some idea because I was a nurse, but I was a mother first and not thinking about statistics. I think his hospital stay went so well because I was able to recognize his seizures very early.
About three days after our discharge, T.J. stopped nursing. He would cry all the time like he was hungry, nurse a few minutes and then fall asleep exhausted. I tried giving him bottles of milk that I had pumped and he seemed to do better. The doctors told me on the phone not to worry as long as he was drinking; he just needed time to regain his strength after his illness. After about a week of this I took him back into the emergency room because he wasn't any better and he was getting dehydrated. He was admitted into the hospital again for about a week and was fed through an NG tube. I took him home with the tube in to supplement his feedings and was told if things didn't improve that he would need a G-tube down the line. Thank God that never happened, due to my and my husband's perseverance in making sure that he got his needed fluid and calories each day.
Well, that was twelve years ago and I can still remember every detail as if it were yesterday. It's just not as painful anymore. We've had plenty of ups and downs through the years and added four more children to the family. T.J. started walking 1 week after his second birthday, to the amazement of doctors. He still has a kind of limp that is gradually worsening as he grows. We'll probably be getting some type of insert for his shoe soon. As for his feeding problems; he started eating some solid food when he was about 14 mos. Now, at 12, he is 5 ft. 2 ins. and weights 110 lbs. We can hardly stop him from eating, unless he has a cold. He says a few words that people familiar with him can understand, but he mostly communicates with simple signs and uses a communication device at school. He understands a lot more than he can say, and is socially and emotionally about on the level of an 18 mo. old. His fine motor skills are gradually improving so that he can write his name, but he can beat any boy in the neighborhood at Nintendo 64 games. He loves horseback riding and is involved in Special Olympics. He got a gold medal this spring in cycling. He hasn't had any seizures in over a year so we think we have finally gotten that under control. Through the years the nature of his seizures has changed and we've gone through countless medication changes. T.J.'s current diagnoses include C.P., spastic hemi paresis, seizure disorder, and pervasive developmental disorder (a relative of autism). There are still times that are very hard on me, especially the transition times in life when he is no where near his peers. You kind of go through a period of grieving each time for the loss of the child that might have been. There are good times too, and I have met some other very wonderful parents that I never would have met otherwise. Right now we are looking forward to sending T.J. off for a weeklong summer camp for the first time. He should have a ball.
I'm willing to talk with anyone who is just starting down this journey in life, has a similar situation to mine, or can help guide me down the path I still have to walk. Mom
Gibsonburg, Ohio. U.S.A.
Posted: July 12, 2002
