Encephalitis Cases
Christopher
My son was born with Cerebral Dysgenisis (half a brain). He suffers from seizure disorder with apnea. He is cognitively delayed, and he has too many other problems to list. Before the encephalitis, he was functioning at about a 2 year old level, we were having hopes of having him be potty trained. He had a vocabulary of about 20 words, and could hum 25 songs.
We were in and out of the hospital due to his seizures and failure to thrive. One visit was because his seizure med shut his liver down. We averaged 10 days a month in the hospital, due to seizures. In April of 1999 he had the Vagus Nerve Implant put in. Oh, our life was changing for the better. By June he was off all seizure meds. And the hopes of him progressing mentally were hopeful.
When the day of our Anniversary came, we were very excited, for our middle son, as a present, was going to baby-sit so we could go out to dinner. That did not happen, for on that day Christopher would not respond. He just lay there very listless, with a high fever. At 5:00 we went to our doctor's walk in clinic. I thank God that Dr. Treiu was our doctor. For he felt that there was something more then just an upper respiratory infection going on. And because of Christopher's history, he felt he should be taken to Children's Hospital. An ambulance was called. We got to the hospital. They did all sorts of tests. Cat scan, spinal tap, blood work up. They admitted him to the hospital, not sure what was going on. To be on the safe side they started antibiotics. The next day he started having seizures. They immediately loaded him with Dilantin. For 7 days he laid there motionless, staring right through us. Having seizures here and there, some lasting up to 15 minutes. On the morning of Thanksgiving (still having no idea of what was wrong) He had a 6-hour grand mal. He was taken to intensive care and put on a reciprocator. They did not give us much hope. (The nurse on 7th floor did not think we would come home with him alive, it was that bad). Down in the PICU they ran more tests, Cat scratch and a couple other blood tests I can not recall, and one for Mycoplasma, we also had another cat scan, which showed a significant amount of fluid on the brain. All tests came back negative but one, Mycoplasma. Before they started the meds, he laid in a coma. We did not know if Christopher would live.
6 days after the start of the meds of Mycoplasma encephalitis, he started to respond. I still can remember the first finger movement. God had answered our Prayers. He slowly was waking up. He was on feeding tubes and machines were still breathing for him. After two days they slowly started to wean him off the respirator. Two days later we were sent to IICU.
He had regressed all the way back to an infant. Christopher could not even hold his head up. Since we had been through physical and speech therapy before, we started to work on him. Before we knew, I was telling the doctors it is time that we try to take him off the seizure med and the feeding tube. They were not to sure about that, but they agreed. He started to respond, positively. On Dec 13, 1999 we were able to come home with our beautiful boy. The doctors told us that many normal children do not survive this rare disease, let alone handicapped. He should not have survived. But by the Grace of God, we came home.
He is now 10 years old (May 21, 1992). We are back to the 2-year-old level; he is nonverbal only saying two words, hi and yeah (not always using them in the right context). Working on potty training again. One thing he did get from this disease is he is now autistic. It is very difficult; he will have anger outbursts for no reason. One positive thing though, is that he is very loving, he loves to give hugs. He is learning to use picture cards to communicate some of his needs. He is able to eat soft food, and is slowly trying to feed himself. He is now back on the seizure meds to help control his seizures along with the VNS implant.
We have learned to take one day at a time, and have learned to really enjoy each and every day. We get totally excited with each new task he does. Because we know that it is a true gift from god.
Thank you for this site. It is wonderful and uplifting to know there are other parents out there.
Thank you and God bless, Diane Rice
Mukwonago, Wisconsin. U.S.A.
Posted: June 14, 2002
