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Evan Stauff was born a healthy 7 lb 11 oz boy on January 11, 2010. The
first two months of Evan's life were typical, as he began to develop
quickly and acted as a normal infant should. On April 1st, 2010
however, Evan and his family's world changed forever. At about
5:30am, Evan's parents woke up to him having what appeared to be
massive generalized seizures. Evan was rushed to the local medical
office to see his pediatrician immediately, and from there he was
life-flighted to Oregon Health Sciences University's Doernbecher
Children's Hospital in Portland, Oregon. At this point, no immediate
trauma was identified through an initial CT scan while waiting for the
life flight team to arrive; an LP was also performed immediately for
any other possible causes. The source of the siezure activity was
After undergoing extensive evaluation throughout the days of April 1st and
April 2nd, 2010 the news of Evan's condition came as a shock. Evan was
diagnosed with epilepsy. We learned that in addition to having possible
tonic-clonic type seizures, Evan was also experiencing a debilitating
seizure type called infantile spasms that come in the form of "clusters."
This became his principle diagnosis and the focus of medical treatment.
Medications for Evan's condition were administered immediately. As time
went on however, each treatment, or antiepileptic drug (AED), proved
unsuccessful and Evan's development began to plateau significantly, then
regress. Several trials were made with each medication, and just when
everyone became hopeful and thought they might work, Evan's clusters of
spasms continued.......often more than before. It was a long and frustrating
experience for the family, and Evan's future was full of uncertainty. During
the medication trials, Evan received several video EEGs, CTs, MRIs and
PET scans, as well as multiples lumbar punctures. It was determined that
the back left portion of Evan's brain was abnormal through EEG results and
a small area revealed in a PET scan; but no immediate identifiable markers
were found. The true extent of his condition was still uncertain, and Evan's
future of seizure freedom was unknown.
After exhausting seven different medications that include: Valproic Acid,
ACTH, Vigabatrin, B6, Trileptal, Topomax, Keppra plus three ratios of the
Ketogenic Diet (click here to learn more about the diet), Evan's epilepsy
status was considered intractable. This means that current medical
management for the seizures has not stopped them and they remain
uncontrolled. Evan's case was referred from OHSU to UCLA Medical
Center's Pediatric Neurology Department in Los Angeles, California to
undergo further evaluation and pre-surgical screenings with Pediatric
Neurosurgery at Mattel Children's Hospital, UCLA.
Many of the same tests that were performed at OHSU were again
completed at UCLA. Given the experience and expertise of the medical staff
with this type of case however, Evan was considered a good candidate for
surgery. The localization of seizure activity on the left side of Evan's brain
was the determination for a procedure to take place. The discovery of
hypsarrhythmia as well in the EEG by UCLA doctors prompted them to act
quickly, and schedule the surgery as soon as possible. Time was a critical
factor, and everyone worked hard to save Evan. The surgical procedure Evan
had is called hemispherectomy. This is the removal or disconnection of one
of the hemispheres of the brain. This surgery has given a new hope for Evan
to become seizure free........ it has saved his life. The surgery was
successfully completed at UCLA on November 23, 2010. Further evaluation
while Evan was in the operating room revealed that Evan's left hemisphere
was much more under-developed than initially thought, or what any type of
imaging tests could fully see. This side of his brain never fully developed in
utero, and as a result most of Evan's left hemisphere was removed, leaving
a very small piece of disconnected tissue.