My daughter Lola is 2 years old and recently suffered AE. Her lab results all came back negative for any virus, cancer or disease. Her lab work even showed that AE was not the cause but because she has a blood disorder they concluded she suffered from AE.
Lola was doing just fine besides dealing with her ongoing blood disorder. Lola started to show symptoms that included walking off to one side, falling when standing, not being able to speak clearly and memory issues. She suffered a very mild seizure one afternoon and we thought it was due to her blood disorder. She was hospitalized for a week and that is when her MRI showed inflammation in multiple areas of her brain.
We were sent home after a week in the hospital and a couple of days later she suffered a Grand Mal seizure at home. She was rushed to the ED and was placed on a ventilator. After trying different medications to stop her seizures it was decided that placing her in a medically induced coma was the best thing for her. She was given IVIG treatment, plasmapheresis, blood transfusions, steroids, and antibiotics since the cause was unknown and all her lab results were coming back negative along with the 3 spinal tabs that were performed.
After being in the PICU for about a month, Lola had to learn how to talk, walk, eat and do normal functions again. She was having issues with her vision and would walk into walls and search for her food on her tray. But she recognized mommy and daddy’s faces. After a few weeks, her vision was back to normal, her speech came back and now she is running and being the 2yr old she deserves to be.
Lola had just celebrated her 2nd birthday just a week before this all happened. She still has ongoing issues with her liver enzymes being elevated and her jaundice skin/eye color but overall she is improving. She has random twitching when she is napping or sleeping but it was confirmed that those twitches are not seizure related. Not sure if this is a side effect to the medications she was on/still on or due to suffering from AE.
Lola takes Keppra for seizures and Ursodiol for her liver. Lola recently weaned off steroids. I was so lost when all of this started because I had never heard of AE. I feared every day for my daughter’s life and prayed so hard. Lola is an amazing 2yr old and has been through so much. I continue to research AE and hope one day there will be more answers.
Krissy (Lola’s mom)