2005

On March 17, 2005 Kevin began having seizures and was admitted into the hospital. Kevin had a grand-mal seizure and continued to have short episodes and clusters of myoclonic seizures while in the hospital. In addition to increasing his Phenobarbital medication he was started on Klonopin medication. A repeat comparison CAT scan was done which "showed large area of cystic encephalomalacia involving most of the territory of the Right Middle Cerebral Artery." We were told this meant that one fourth of Kevin's brain was damaged. Kevin was discharged on April 3, 2005 and his seizures continued daily until June 26, 2005. Each time Kevin had any further seizure activity his Klonopin dose was increased. It went from 0.3 mg a day up to 1.2 mg a day when the seizures came under much better control in June 2005. After that time he would have occasional and brief seizures. By December 2005 the Klonopin dose was up to 2.2 mg a day.

Kevin received an Occupational Therapy evaluation at the age of five months (before his hospitalization for seizures in March 2005). We were told that he was reaching his developmental milestones on time with the exception of his left hand. His left hand was generally fisted with the thumb indwelling, but we were encouraged by the fact that he was aware of his left hand and would often use his right hand to open his left hand's fingers. At this time were were concerned about his inability to use his left arm and hand and the tendency for his head and trunk to lean to the left. After Kevin's hospitalization for seizures in March of 2005, he had a significant developmental regression. This included decreased head control and decreased control over the right side of his body. We also noticed he lost his ability to smile, laugh, and cry. Shortly after his seizures subsided in June 2005, at about nine months of age, these abilities finally returned.

Kevin was breast fed for his first year of life. We slowly began introducing him to solids when he was five months of age. At his one year checkup, Kevin's weight was significantly below the growth curve and I was told to begin supplementing with a bottle of formula. I began using a soy formula because after Kevin's hospitalization in March 2005 we discovered a milk allergy, in addition to some other foods. Kevin refused to take formula. The professionals suggested that he have a swallow study done and with those results it was recommended that we agree to a gastrostomy tube. We did not agree, instead I chose to thicken Kevin's formula and feed him by spoon. Kevin had no respiratory problems, he never had pneumonia, and he did not wheeze or cough. I discontinued breastfeeding and he ate well by spoon for about a month. then he began gagging and spitting up food for the first time. We changed his formula to a hypoallergenic and then secondly changed his thickener brand. By December 2005 he was holding food in his mouth and sometimes tongue tremors were observed. He also appeared to be less alert and interactive at meal time.