Encephalitis Cases
Ethan
Ethan became extremely lethargic and starting having seizures. His left arm was twitching. We took Ethan to the hospital, only to be told, "He was a perfectly happy little boy." His seizing had stopped by the time we arrived at the ER. After a battery of tests and two hospitals later, Ethan was diagnosed with HSV Encephalitis. He remained in the hospital for one month. He was treated with Acyclovir and Phenobarbital for his seizures. His brain starting bleeding 2 weeks after his initial admission. Luckily, they never had to do surgery. His swelling went down with medication, and Ethan starting acting a little better.
During our hospitalization we noticed that his left arm (especially his left fingers) were not reacting like they use to. He did not know his left arm was attached to his body. His left foot and leg were a bit slower to react to stimuli as well. After we got home, Ethan stopped eating. We had a swallow study performed. It showed normal swallowing. He did not lose weight throughout his "no eating" time period. He was seizure free for two months but than starting having more seizures. We have changed seizure medication three times and now have Ethan on a combination of Topamax and Neurontin. We have seen a variety of physicians. Pediatric Neurologists see Ethan the majority of the time.
Based on his most recent MRI, Ethan has complete right-sided brain loss. His tissue has been damaged and has been replaced with fluid. We have Ethan in therapy 2 times per week. He is seeing an OT and a PT. Thus far, we have not seen much of a difference in using his left side of the body. He is behind in his milestones. He can turn over one way -- using his right leg to kick off. He can sit for about three minutes at a time. Doctors have told us he may have issues with speech development. We were also told, not to expect left arm/hand motor skills to come back completely.
Ethan's disease has affected us more than anything in life. We have a new appreciation for our son. We were originally told he had a 50% of survival and Ethan has proven to everybody that he is a survivor! He laughs and giggles and recognizes his parents. We are so lucky to have him in our lives. I am scared about what the future holds. I still cry when I think of him not having the potential he had when he was first born. I never imagined my first son, being handicapped. I love him and I look forward to raising him to be a good person. I would love to hear from other parents who have similar experiences. I have tried support groups, but this disease is so rare.
Thanks. Please feel free to contact me. Update:
Ethan is now 7 years old and doing well. So much has happened over the last 6 1/2 years. When Ethan was 2 years old, I gave birth to his twin brothers and Ethan had half of his brain removed due to seizures from his initial brain injury. His hemispherectomy surgery went well, but one year later he developed hydrocephalus which required a shunt to be placed to drain the excess fluid. He has had one revision since. A few months ago, Ethan had leg and ankle surgery due to his high tone. He is slowly walking again, but requires a brace. Ethan is in second grade and in a special day class in our local public school. He has advanced so much in the last 2 years. He is now able to understand everything we tell him. He cannot talk, but does manage to say a few words. He particularly likes to say mama, bye and hi. He uses a device that talks for him to communicate. He is the happiest little boy. He works so hard considering he has school and therapy almost 7 days a week. We never thought he would advance this much. He makes everyday worth living. Whenever I start to feel sad or mad about this disease, I look at his happy face and know he is happy and content. For all the families starting out with this horrible disease, please don't give up!! It took Ethan 3 years to come out of this fog. It was worth every struggle and every therapy we tried. Moe and Carrie
California, U.S.A.
Posted: May 28, 2002
