Savion Jadon Wesley is a 2 ½ years old born on April 15, 2009. He was a healthy 8 lbs. beautiful baby boy. Every checkup for the first 10 months of his life was always great news. He appeared to be developing well. He hit all of his milestones ahead of schedule. Savion even said words such as “hi”, “bye”, “dada”, “mama”, and “no” as early as 7 months. Things somehow took a turn. Savion began to have startled like movements or spasms. Fortunately, the pediatrician finally took heed to Savion’s mother’s intuition that something was wrong. An EEG was scheduled showing slightly abnormal brain activity and in March 2010, he was diagnosed with infantile spasms. In the time he was set to await follow up with a neurologist through his pediatrician, Savion went from a bubbly baby to emotionless. Because there was a 3 month wait for the neurology clinic, the family sought other resources. The Children’s Hospital of Pennsylvania (CHOP) were more expedient in getting Savion scheduled for the neurology clinic as quickly as the very next day from the initial call. Savion was admitted for an overnight EEG on March 25, 2010, just a few weeks shy of his first birthday.
He was immediately sent for an MRI, which showed that portions of his left temporal lobe had never fully formed with no scientific reasoning to explain. Just as quickly as he was diagnosed with this disease, it seemed as if Savion stopped clapping, talking, and understanding those around him. Life began to fade from his eyes and his SMILE began to vanish. Savion was having at least 40-50 seizures or spasms a day that were seen to the human eye.
Countless medications were tried on Savion. The first treatment was a B6 shot, immediately given to him in the hospital, which unfortunately did not work. During his stay at CHOP, they began treatment with a medication, known as ACTH, which for one tiny vial cost over $30,000!!! His mother was trained on how to give these injections to him in his muscle. Savion was on this aggressive steroid for about 4 months. Along with injecting this medication into him several times a day, his glucose required checks as well as, his urine and stool for blood. This drug not only had the ability of causing some major organ damage, it caused Savion to gain a lot of weight, and unfortunately it also weakened his immune system. Savion, was not able to experience a 1st Birthday celebration as his other siblings had once experienced because he couldn’t be around other children.
During this time, it initially appeared that the medication was working. Savion began laughing and SMILING again. He began shaking his head “no” and “yes”. However, this is a drug was known to cause damage to the kidneys, liver, and have other serious irreversible effects. What the family thought was their miracle drug, was not, Savion’s spasms began to reappear. As a result, Savion was slowly weaned off of that medication and was placed on Sabril on July 21, 2010, which at the time, was not even available in the United States. It was explained that he may lose some of his vision from this drug, and it would not return, even after he was weaned off. With this drug, came monthly visits to the pediatric ophthalmologist. After being on this medication for some time, Savion had another EEG, and it showed the hypsarrhythmia and spasms were basically gone. The family was again excited and Savion continued making progress. His neurologist informed that although his EEG looked almost normal, she would present him to the surgical board in November as a possible candidate for surgery. He began making inch-stones playing peek-a-boo and such. However, 2 months later another EEG showed devastating results, the spasms had come back! His dosage was increased and other medications were prescribed which also had concerning side effects. Savion was eventually taken off of Sabril, because the seizures began to increase, but he still remained on the Topamax and Depakote prescribed. As a next step, Savion had to begin taking Keppra, another anti-seizure medication. It became evident in a few short weeks, these medications were not working. Savion’s development was rapidly decreasing. And once again he lost his SMILE!
On July 5, 2011, Savion was admitted to CHOP to be placed on the Ketogenic Diet. This was a last attempt before surgery. In fact, during his stay for the ketogenic diet the results of the MRI and EEG scan were in. The portion of the brain did not develop any further, and if the diet was ineefective surgery would be the next option. Savion was admitted to CHOP for a week, where he was monitored because his body needed to be in ketosis. This diet has been a miracle cure to many who are diagnosed with many forms of Childhood Epilepsy. He had slight problems with his CO2 intake, and had to be placed on a Bi-Carbonate to help regulate. So as of July 5, 2011, Savion’s seizures were being controlled by the Ketogenic diet, and three different seizure medications. In addition, Savion has to take a daily vitamin since this diet contained very little carbs and nutrients. And he remains on two other medications prescribed to deter the side effects that can occur because of the diet and medication combination.
Prior to his stay in the hospital for the diet, Savion’s physical seizures were occurring anywhere from 20- 40 times a day. While in the hospital, Savion's seizures went quickly to about 11 a day on the first two days of the diet, to 4 or 5 by the time he was discharged. The diet was working! Although this diet was very hard to follow, his mother fought relentlessly for the SMILE that was lost. His mother was now responsible to measure out his food to the tenth of a gram, administer his medications, check his glucose levels 3 times a day, check his urine for blood, ketones, and PH levels, and test his blood for Ketone levels. In addition it was still pertinent that he be taught all the things he had lost by incorporating OT, PT, and Developmental Therapy.
A month after the diet, Savion had an EEG, which showed very little improvement, but the neurologist thought that it may have been too early to see a positive change in his EEG. In November, at the same time Savion was presented to the surgical board, another EEG showed that there was still no change in his abnormal and chaotic brain waves pattern. As a result, surgery was underway. Savion had his surgery Wednesday, January 4, 2012. Savion was in surgery for a little over 5 hours! During the first few days after surgery, Savion slept most of the days! He was in such pain, but surprisingly he only needed pain medication administered to him twice. After surgery, Savion’s seizures decreased from about 20 a day to about 2-3. On January 10, 2012, Savion had no seizures at all!!! We are praying that he remains seizure free! Savion is still on the diet and taking medications, because the doctors need everything to remain stable as the brain heals itself, and prayerfully resets itself.
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