Brett and I have been overwhelmed by the many calls and emails of support, love and prayers for our family. We are still trying to come to terms with our emotions and with trying to make such quick decisions for Jenelle. This has all happened very quickly, and it helps to know we have so much support and love. Thank you.
Jenelle's 24 hour Video EEG began on Thursday, September 11, 2003 at 11:00 a.m.. She was released the next day about the same time. It was a little weird checking her into Children's Hospital on such an emotional anniversary as September 11. The test went well, and I stayed with her the entire time, and Brett only left that night to take care of Jack. I "marked" many, many "events" that may or may not have been seizures - over a hundred I believe. Dr. Phillips arrived the next morning and met with us before releasing Jenelle. He studied some of my marked events for about 10 minutes and felt some were seizures, and that some were not. He is still not certain if she has Infantile Spasms which means he was not ready to start the aggressive treatment that day. The VEEG results will take two days to process, and we will talk with him again on Monday. Because we confirmed that Jenelle is having seizures, he placed her on Phenobarbital which is an anti-seizure medication common for patients with Epilepsy. Jenelle definitely has Epilepsy, what form we are not certain. True "IS" will not respond well to the Phenobarbital (meaning the seizures will continue) so that may help us in the diagnosis.
Through another Mom friend from daycare (the same who suggested Jenelle might be having seizures) we were given the phone number for a parent who's daughter is a patient of Dr. W. Donald Shields at UCLA. Dr. Shields is the leading authority on the West Coast (if not the nation) for Infantile Spasms. She gave me a private number for his personal nurse assistant, I left a message with her during the night of Jenelle's VEEG. The nurse called us back minutes after Dr. Phillips left Jenelle's hospital room. We mentioned UCLA to Dr. Phillips, and he was all for us contacting them as well. Dr. Shield's nurse got some more information about Jenelle and her history, and said she would speak to Dr. Shields that afternoon to see if he wants to personally see Jenelle. She promised to get back to us that day, and she spoke to Brett later in the day informing him we would be seeing Dr. Shields on Thursday, September 26, 2003 at 1:00 p.m. When I originally spoke to Dr. Shields's nurse, she said they knew Dr. Phillips, and we were already seeing one of the best in regards to Epilepsy. That was comforting.
So, we had some more time to wait, and now an appointment for a second opinion. It is still very possible that Jenelle could be back at CHOC next week sometime to start the steroid treatment. Regardless, we do know that she is having seizures, and we need to stop them in any way possible so we can avoid any type of brain damage. At least we know have some idea of the direction we need to go.