Andrew was a happy, healthy six month old baby. On June 10, 1996, I put him down for a nap and when he woke up he had a fever and seemed to be coming down with something. I called the pediatrician that evening because I was concerned and he told me to give him Tylenol. As the night went on, I became more concerned. Andrew was restless and had a high fever and he seemed to be so uncomfortable. He was so sick he barely moved and could not even cry. When I took his temperature it was 105 and I tried to get his fever down with Tylenol and a cool bath. I sat up all night with him to try and make him more comfortable and at about four o'clock I called the pediatrician because nothing seemed to be helping. He told me to take him to the emergency room.
When we got to the hospital Andrew was like a limp doll. They started doing tests
on him but they kept saying that it was the flu. They tried repeatedly to draw blood from
him but his veins were so small it was difficult to get blood. With all the needle pokes,
Andrew just laid there too weak to even cry. They finally got a blood sample through his
scalp and then did several other tests. The only thing they did not do was a spinal tap.
Andrew's pediatrician had arrived at the hospital and we thought that he had been through
enough so we opted not to do the spinal tap. The hospital could find nothing wrong with
Andrew so they sent us home and told us to alternate Tylenol and Motrin every two hours.
After leaving the hospital, I still didn't feel right about the way Andrew was behaving so we went to the Pediatricians office. They told us that there really wasn't anything they could do so we went home again. We went through the next few days giving him the medicine but something seemed different about Andrew's behavior. He seemed so weak and lifeless. If you lifted his arm or leg in the air, it would flop back down. He had lost all muscle tone and could hardly open his eyes.
Andrew's six month check up was shortly after his illness. As the doctor examined him, it was obvious that something was wrong. Andrew could no longer support his weight when he was stood up. It was like he was a newborn baby again. At the end of the visit, we scheduled an appointment with a neurologist. After the visit with the neurologist and a MRI of the brain and spinal column, and more blood work, they concluded that it was encephalitis. The doctors could not give us any answers as to what the illness had done to Andrew. It was just a wait and see thing. His hands had very limited movement and he could not move his legs. They started him on physical therapy right away and he slowly got back his strength.
It was months before he learned how to sit or crawl. It was difficult for him to pull up to a standing position. He learned to walk after he turned two, but his gait was not normal. His orthopedic doctor recommended braces so we went to Shriner's hospital and was fitted for AFO's to support his legs and keep his muscles stretched. He still had difficulty with balance and tends to fall frequently and walks with his feet turned in. He will need surgery when he is about ten years old to correct his walking and balance problems.
The Shriner's Hospital has diagnosed Andrew with Spastic Diplegia (brought on by viral encephalitis) which is over contraction of the muscles of his legs. He has stiffness in his legs and the uneven muscle pull has caused his leg bones to twist and his feet to turn inward. His hands seem to have recovered and they have normal function. He has recently been diagnosed with a spastic bladder and has no bladder control, but we hope that will come in time.
Today Andrew is a happy, healthy, bright 4 ½ year old. He has been in pre-school since age three and is doing very well. Although we all have had a difficult time with all that has happened because of his illness, it could have been much worse. We are trying to make the best of the situation and get Andrew through the more difficult years. He has made such great strides. We were not sure he would ever walk and he has amazed us by finding a way to run.
I have read several encephalitis stories and although many are similar, the end results are so different. That is the scary part of encephalitis, the uncertainty of recovery and the doctors don't have any answers. I hope that by submitting Andrew's story it will let others know that they are not alone. We take one day at a time because there is no other way to get through this.
Thanks for reading, Sheryl
Posted: July 30, 2000