We just finished our meeting with Dr Chugani who was helpful in answering our many questions about June. After reviewing her PET scan and EEG, he said June is not a surgical candidate because her seizure activity is diffused throughout her brain. In other words, there is no epileptic focus to remove at this time. The nature of her epileptic activity leads him to believe that June most likely has a genetic disorder. This could be caused by a spontaneous mutation, something I may carry, something Matt may carry, or something we both carry. As I've mentioned, Dr. Chugani is a pioneer in research of infantile spasms, and he is leading a study on the role genes play in infantile spasms. He asked us to participate since he is able to test all three of us. We are hoping the test will give us more answers in addition to the genetic testing done on June this summer.
Dr. Chugani also talked to us about his recommendations moving forward. He thinks June should go back on Vigabatrin – one of the frontline medications used to treat IS, for a longer period because of the improvement she showed on it. If that does not work, he suggests we then try the ketogenic diet.
June has been so brave during the tests. She keeps smiling and laughing and stole the nurses' and doctors' hearts. They were smitten with her, but how could they not be? Thanks for everyone's thoughts and prayers. Your messages and comments have helped Matt and me to stay strong. We are so blessed to have such an amazing support system. We will continue to fight on for June.
June on her first plane ride to Detroit