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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 unknown.
About Evan
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 (or also known as "grand mal"), 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. Evan's parents David & Kathleen, and his two older brothers Chandlor & Patrick, were completely devastated at the news of their baby's condition. 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. At this point nothing was working and Evan's development was slipping further and further away. David & Kathleen would not give up on Evan, and continued to seek answers and a step further in the process: surgery. 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. Evan's family was not about to give up hope and go home with another medicine to try. Time was critical, and Evan needed a chance.......one that surgery might provide, and UCLA was the place to go.
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. This surgery needed to happen, as this was the only way to receive an improved quality of life for Evan. The surgical procedure posed a significant challenge for the medical team, but after eleven hours the family got the news that everything went well. A couple of weeks following the surgery, the medical team was very surprised at Evan's miraculous recovery and agreed to his discharge from the hospital. Evan is now back home in Oregon and will continue to undergo extensive therapy at this point. He will also continue to have follow up visits with the neurological team to evaluate his progress. Feel free to contact Evan's dad, David, with questions.
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