Encephalitis Cases
Rheena
At first we thought it was just a flu because it was that time of the year. It was nothing out of the ordinary: a low grade fever, dull headache and some nausea. But by the second day, she was vomiting everything that she ingested. She was also more sleepy than I had noticed with her other illnesses. At this point, she really wasn't complaining a lot so I decided to observe her one more day. That night was pretty uneventful, she only woke up at five o'clock in the morning to use the rest room. However, I noticed she was limping and did not want to open her eyes. Her headache was more intense but her temperature was only 100.6 and with Tylenol she went right back to sleep. By nine o'clock that morning, I could not get her out of bed without carrying her to the dining room trying to get her to eat some breakfast. She had her eyes closed all the time, so I asked her to open them so she can see her food. Alarmingly, she told me she could not see and I noticed her left eye is deviating to the side. I immediately rushed her to our pediatrician and an hour later she was in the pediatric intensive care unit.
At that point a CAT scan showed brain swelling. An initial diagnosis of HERPES ENCEPHALITIS was entertained and she was incubated, placed in a thiopental induced sleep, lumbar tapped and monitored for increased intra cranial pressure. Despite being treated heavily with anti-viral medicines, her condition just got worse for three days. Her intra cranial pressure just kept skyrocketing making her life in danger so an emergency craniotomy was done. A brain biopsy was taken at this point and sent to a nearby university hospital. The diagnosis that came back was ACUTE HEMORRHAGIC LEUKO ENCEPHALITIS (A.H.L.E.). The cells that were designed to defend the body were instead turning lethal and destroying my daughter's brain. This is an extremely rare auto-immune form of encephalitis where the coating of nerve cells are destroyed by the bodies own immune cells.
Rheena's life was guarded for the next four and a half weeks. She was alive in the intensive care unit simply by the care of others. Her heart and lung function and her brain pressure controlled from the outside. She was being kept in a coma state until her body could control itself. There are no words eloquent or descriptive enough to fully explain the fear my husband and I felt during those time of uncertainty. I ached every time I saw her tiny body connected to all the life support, imagining the depths and dimensions of her suffering. This experience had challenged me on a personal level. I had always been of the mind set that doctors and nurses can't cure a patient alone. I kept vigil at my daughter's bedside day after day praying for a miracle, asking the Holy Spirit to guide her doctors, nurses and therapists find a way to cure her. Her prognosis was grim but my faith had proven the power of prayer and love. My family is so lucky to have known so many loving people who have offered masses, prayer intentions and remembered us in their own private prayers. Because of this outpouring support that we got from the community and her school, it made us endure the months of loneliness, isolation and confusion that this disease had brought us.
It's now seven months since the onset of her illness which made her paralyzed on the left side of her body. Although the outcome should have been devastating, our daughter walks, talks, cares for herself and is back to school. Thanks to her teachers and therapists she's almost back to being normal again. She is placed in a regular 5th grade class with RSP. She still has some weakness in her left hand and a deficit in her peripheral vision, although it is still early to know if there is any residual. We were told that after effects remaining after two years are likely to be permanent.
To all parents who have this same experience, please don't lose hope because no matter how long your child has been in a coma they can always bounce back to their old self again. Rheena is more sensitive and emotional but other than that her recovery is truly a miracle. I thank GOD everyday for bringing her back to us. I am so grateful and impressed of the caring heart of everyone involved in her care at Children's Hospital, San Diego. I know that they were amazed and pleased at how fast she recovered. Everyone in the intensive care unit including her pediatrician were so overcome with tears when they saw her moved and talked for the first time after 40 days of vegetative state. She came home without replacing the bone flap because of infection and because of this she has to wear a helmet all the time until a cranioplasty is done, hopefully in a month.
I will keep you posted of our daughter's recovery but in the meantime please feel free to contact me if you want to share your feelings and thoughts. Update: July, 2007 I wish I have a better news for you but Rheena is back in the hospital with the same illness 8 years ago. She's at Children's Hospital for 11 days now, still in induced coma. The doctors are baffled why it came back. She did not have any signs or symptoms except headache and seizure. An MRI is repeated today at 5:30 PM and hopefully it has some improvement.
Rheena did graduate on June 15th and even performed "HULA" at the Delmar Fair June 16th. I took her to the emergency room on Saturday, June 23rd at a local hospital and was helicoptered to San Diego Children Hospital where she was before. Please remember her in your prayers. God Bless.
RexieCalifornia, U.S.A.
Posted: May, 2000
