December 18th we found out she was having seizures, focal seizures to be exact, a right hand tremor was developed during this stay. We were able to be discharged a few days before Christmas. A few failed meds brought us back inpatient for med changes and EEG monitoring, as well as the right hand tremor. This admission ended with us being transferred to Boston where we got the diagnoses of EPC- Epilepsia partialis continua (EPC) is a condition that occurs when seizures happen every few seconds or minutes. Our girl has spent so much time in the hospital being poked, and tested for everything under the sun. Adjusting to no longer being able to use her dominant right hand for any fine motor skills. She’s had countless blood test, genetic testing,EEG monitoring, 5 MRIs, lumbar puncture, PET scan, neuro psych evals, 5 inpatient admissions, Occupational therapy, numerous ER visits, and many many neurology appointments. She is currently on 3 seizure meds and still having 10+ seizures a day. Our girl has been diagnosed with a rare neurological disease called Rasmussen’s Encephalitis- Rasmussen's encephalitis (RE) is a very rare, chronic inflammatory neurological disease that usually affects only one hemisphere (half) of the brain. It most often occurs in children under the age of 10 but can also affect adolescents and adults. RE has features of an autoimmune disease in which immune system cells enter the brain and cause damage. The disease is characterized by:
Frequent and severe seizures
Inflammation of the brain (encephalitis)
Mental deterioration
Progressive loss of neurological functions including motor skills, speech, and eventual paralysis on one side of the body (hemiparesis)
Our baby will be undergoing a hemispherectomy on March 28, 2024- A hemispherectomy is a radical surgical procedure where the diseased half of the brain is completely removed, partially removed and fully disconnected or just disconnected from the normal hemisphere. This is one of the most successful operations at stopping seizures in carefully selected patients- in a few weeks to disconnect the left side of her brain. Followed by extensive therapy to hopefully get most of her motor, speech and cognitive function back.
