My beautiful granddaughter aliyza was a healthy happy 2 year old smashing all her milestones then in june she become ill with what seemed at the time to be a tummy bug, paramedics came out twice over 48 hours then on the 3rd morning she had a seizure at home in her dads arms she was blue lighted to hospital where she continued to have 3 more seizures all this time she had no temp all obs were normal etc the 4th seizure was massive lasted 50 minutes and no medication would bring her out of it , she had to be intubated and sedated and was put in gloucester icu and later transferred to bristol childrens hospital icu where she underwent more tests ct scan lumbar puncture she was found to have strep G .she was transferred back to gloucester royal and discharged with follow up appointments as an outpatient she went on to have eye tests, an eeg and an mri scan all came back normal except the mri which showed she has a rare brain condition called chiari malformation type 1 with a 13mm herniation. Not many drs seem to know much about the condition research has told us there is no cure only treatment to help .. since diagnosis aliyza has severe head pain when she laugh, strains or crys , she has weakness in her arms and legs , fatigue and possible post traumatic anxiety .. she has recently had icp monitoring which consisted of drilling a small hole in her skull placing a wire on her brain and monitoring the pressure for 48 hours again all seeming to be normal ..we are awaiting a sleep study .. this weekend aliyza came down with a bug on saturday by sunday she had a seizure again no temp obs fine and went on to have a 2nd in hospital she is currently still in hospital being monitored and treated for possible meningitis .. she has bouts of confusion and muddled speech but this is being brushed off so we want to seek a second opinion from a top neuro team in boston they will study her medical history and give their opinion also tell us if the chiari and seizures are linked ..