Elliott, Age 15, Sarasota FL
This is my son Elliott.
He’s a friendly, soccer-lover and a member of the JROTC Raiders Varsity team of his school. He was in his freshman year trying to adjust to a new school until last September, when he started complaining about a weird taste in his mouth, to the point that he didn’t want to eat because everything tasted weird; then he complained about weird distorted vision, pressure on the left side of his head and not feeling himself. I took him to his pediatrician and he said that maybe he wasn’t eating properly for all the kinds of strenuous activities he was doing, maybe he had some hypoglycemia. We went back home and next day he had a Raiders meet; he could only complete a 5K run and an obstacle course because, in his own words, “his vision was messing with him”. That night, we went to bed and in the first hours of Sunday I heard him moaning and moving, I went to the living room and he was lying on the floor, in a fetal position and rigid. I tried to wake him up, his eyes were closed and that’s when I realized that he was having a seizure. I hollered at my husband that Elliott was unresponsive. by then his two brothers were awake and trying to figure out what was going on. The ambulance took 5 to 7 minutes to get to our home – those minutes felt like hours to me. In the ER they ran all kinds of tests, including a scan, x-rays and blood work. They couldn’t find anything so they sent us home. Not even pulling into the driveway of our home and he had another seizure, so this time we took him to Sarasota Memorial ER.
There he had another seizure that lasted about 10 minutes and the pediatrician on call administered Ativan and Valium. More testing was done, this time an MRI and a lumbar puncture among other testing. The lumbar puncture revealed a high white blood cell count in his spinal fluid, so they diagnosed him with either an infection or a virus. Additional testing came to determine the reason, everything came negative, so they sent us home, putting Elliott on Kepra, an anti-seizure medication. He did well for a week or so, still hallucinating and feeling so depressed at the point of crying for no reason, feeling exhausted and unable to function properly in the mornings, hindering him from going back to school. The seizures returned the following week, lasting about 2 minutes every 2-3 hours so I took him back to his doctor and he said that the virus had to run its course and he said we needed to find a pediatric neurologist. That night when my husband came back home from work we decided to rush him to All Children’s Hospital ER in St. Petersburg, about 35 minutes from our home town.
They admitted him immediately and that night he had more seizures, so they ordered a 24 hour EEG and more blood work. The second night at All Children’s was the worst ever – he became so agitated and was having hallucinations, jumping out of his bed and trying to run out of his room, getting violent, kicking the nurses and talking nonsense. Security guards had to come and try to restrain him with no success, so he had to be strapped to his bed since 7 people couldn’t hold him down. The ICU staff came and they injected him with Ativan, Kepra and Haldol and he was sent to the ICU. He slept for an entire day. More testing came and the neurologist decided to discontinue Kepra and put him on Depakote, an anti-convulsant and anti hallucinating medication. He was in ICU for five days where they did a second lumbar puncture and tons of blood work to check if he had any infection or virus, every single possible one. Everything came back negative.
Finally they got to the conclusion that his problem could be autoimmune, so they sent us home until we got the results of a blood test that would indicate if he had an autoimmune disorder. He was seizure and symptom-free and showing some improvement. Two weeks later the doctor’s office called saying that he needed to see us the very next day. That made us nervous, so my husband, Elliott , his brothers, and I prayed for a good report. The results of the blood test came back and the doctor confirmed that Elliott had anti-NMDA receptor encephalitis, so that same day he got admitted to All Children’s for his first round of IVIG. They ran more testing to rule out any possible tumor in his body. Ultrasound of his genitalia, another EEG, Scans, more blood work, a very detailed MRI of his head, chest, abdomen and pelvic area, and another lumbar puncture. Everything came out clean – no tumors. They did two rounds of IVIG and they sent us home. He’s been responding just fine and a month ago we had a follow up appointment where the doctor, my husband and I decided not to do another IVIG round that month, under the condition that if he started showing symptoms we would take him right away to be treated. He did great that month, the doctor lowered his medication to 750mg at night and 500mg during the day (originally he was taking 1500mg a day, a very high amount).
We had an appointment yesterday, December 13 and the doctors were surprised to see how he has improved and recovered, so they lowered the dosage again to 500mg at night and 250mg by day. As of right now he’s not completely where he’s supposed to be, his behavior is just fine, just acting a little bit silly, but we know that it will take time for him to be back to being himself completely again. We’re working with his school to have him catch up for all the four months he has missed school. The doctor said that going back to do school will be the baseline to determine if he’s completely recovered.
We’re still fighting and hoping for a great, bright future for my life-loving, sports fanatic, full of potential 15-year-old boy.