Friday, July 1, 2011

My story

My name is Harper Johnson and I was born on May 2nd, 2011 weighing 7 lbs 3 oz.  My parents began to worry about me on day 2 as I began to have seizures.  After two EEG's, an MRI, and a Spinal Tap and 5 days in the NICU at Rose Hospital I was moved to Children's Hospital in Denver via Flight for Life.  I spent 3 weeks at Children's, had an abundance of tests and continued to baffle my doctors.  I was initially diagnosed with Ohtahara Syndrome after numerous EEG's.

Before I was born my brother Aidan would call me "Nezbah" as my parents hadn't decided on a name yet.  Unbeknownst to them, Nezbah is a Navajo word meaning 'woman in battle'.  This is my story.

My parents and I continue to research, seek other opinions, and explore all options as far as treatment goes for me.  The doctor's can't seem to decide what diagnosis I have.....whether it is Ohtahara syndrome (OS) or something similar.

"Ohtahara syndrome is a neurological disorder characterized by seizures.  The disorder affects newborns, usually within the first three months of life (most often within the first 10 days) in the form of epileptic seizures.  Infants have primarily tonic seizures, but may also experience partial seizures, and rarely, myoclonic seizures.  Ohtahara syndrome is most commonly caused by metabolic disorders or structural damage in the brain, although the cause or causes for many cases can’t be determined.  Most infants with the disorder show significant underdevelopment of part or all of the cerebral hemispheres.  The EEGs of infants with Ohtahara syndrome reveal a characteristic pattern of high voltage spike wave discharge followed by little activity.  This pattern is known as "burst suppression." Doctors have not yet seen any inherited cases of Ohtahara syndrome, but have observed that boys are more often affected than girls.  The course of Ohtahara syndrome is severely progressive.  Seizures become more frequent, accompanied by physical and mental retardation.   Some children will die in infancy; others will survive but be profoundly handicapped.  As they grow, some children will progress into other epileptic disorders such as West syndrome and Lennox-Gestaut syndrome."

The doctor's did tell my parents that they were surprised that my seizures stopped at 6 weeks old, in connection to ACTH injections and are not sure where to go from here.  So here goes my story, my daily routine, ups and downs as we try to figure out what my future holds.  My goal is to prove the doctors wrong, to be able to walk, talk, and live a productive life which they are thinking is not going to happen. 

I am Nezbah and this is my battle.

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