Austin Erpenbeck

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Austin’s story…..                

Austin was born on August 28, 2009 to proud parents Eric and Mollie.  Just hours after birth, Austin had some irregular eye movements which were suspected to be indicative of a seizure.  He was sent to the NICU where he was subjected to several tests in an attempt to verify a diagnosis of epilepsy.  All tests came back “normal” and doctors could find no evidence that a seizure had occurred.  After about five days of observation and testing, he was finally released to go home with his family.

Over the next several weeks, the irregular eye movements continued (but were sporadic) as well as abnormal posturing of the head and neck.  Several of these instances were videotaped in order to demonstrate to his doctor the specifics of what parents were seeing.  Once presented with the videotape, his pediatrician suggested that a neurologist review the videotape and symptoms.

austin school

austin drawing austin ice cream

Though diagnosed with nystagmus (an eye movement condition), doctors were certain that all of the irregular eye movements could not be explained with this diagnosis.  The next several months were spent attempting to determine a final diagnosis.  To complicate measures, at approximately five months of age, it was discovered that occasionally one side of his body appeared paralyzed.

At six months old, he was referred to a neuro-opthomologist in hopes of getting a complete diagnosis.  After examining Austin, the videotapes, and speaking with the parents, Austin’s doctor diagnosed him with Alternating Hemiplegia of Childhood (AHC).

Austin’s attacks occur every two to three weeks and last an average of three to four days.  The severities of the attacks vary greatly from a single limb paralysis to full body paralysis. His longest full body paralysis lasted a grueling 14 days. Feeding Austin during this time is complicated as his tongue is non-functional and choking becomes a huge concern. We get through each day minute by minute.

austin rocking it   AustinErpenbeckcrop  austin baseball

Austin was  prescribed Serebilium Flunarizine (a calcium channel blocker) which must be obtained through Canada as it is not FDA approved for US.  He began taking this medication at 9 mo of age.   This prescription appeared to have reduced the duration of the attacks down to three or four days (prior to medication the average attack was seven days) but has not affected the frequency.

Austin began walking when he was 3.5 years old. He is beginning to speak in phrases. He played his first baseball season over the summer! These are all major achievements that he has accomplished. Austin loves attending school and playing with his older sister and brother. He also loves to draw, eat ice cream, and spend time with his family and friends.

Aside from everything Austin has been through, he remains to be the happiest, most loving little boy.  His smile can light up a room.  His giggles are contagious.  He IS the love of our life!