After Jenelle's IFSP, we really started to notice Jenelle's seizures increasing, and her activity and development decreasing. It was then that I created my "own nightmare" between myself and Jenelle's Neurologist Dr. Phillips. Remember that love-hate relationship I was describing?... well, as Jenelle's seizures increased with the Pheno wean, I emailed him to see if we could increase her Vigabatrin. At the same time, I also emailed UCLA. Dr. Phillips told me not to increase the Vigabatrin but to increase the Pheno if the seizures were out of control. UCLA told me Jenelle could increase her Vigabatrin by another 1000 mg and that she was really only taking half the amount she could be taking. They suggested we keep up with the wean, and give the Vigabatrin a chance, but increase it slowly. So, I emailed Dr. Phillips with their advice... and of course after the fact I realize how that may have been insulting to him in that I double checked his advice. In return, Dr. Phillips sent me a "lengthy" email suggesting I make any changes in her drugs slowly, and that no seizures should be expected or accepted. We didn't email again until our next appointment, meanwhile I made the decision to increase the Vigabatrin - which in turn decreased the amount of seizures we were seeing. Well, I may have hurt his ego, but I think I made the right choice. It was just so annoying to see her seizures increase and know there was little we could do.
A few days later, our Jack (almost 3) woke one morning with a fever of 103. My first instinct was, "Oh God, please don't get Jenelle sick!" Poor Jack was home for a week with a very high fever. I felt OK and that I wasn't getting sick too until Friday, December 19 - ironically, the day of our next appointment with Dr. Phillips for Jenelle. When he asked how her seizures were doing, and I told him they were better, he smiled and said, "You increased the Vigabatrin didn't you?" That was all we said about that. He felt we should stay the course and once she was completely off the Phenobarbital, we'd give Vigabatrin another month to see if it helped. All three of us (Brett, Dr. Phillips and me) feel our next step will be the Ketogenic diet. That may begin as early as February. I told him that UCLA had a 4 month waiting list for the Keto diet, then Dr. Phillips informed us that he used to work with the best Keto team on the West Coast from Oakland Children's Hospital. The Oakland team was actually trained at Johns Hopkins in Baltimore - where the diet originated. Therefore, we may start sooner with Dr. Phillips here at CHOC. Our next appointment with Dr. Phillips is at the beginning of March.
Jenelle has been asked to participate in the NYU Epilepsy Center study on Infantile Spasms. They got my email from one of my internet support groups and asked if we'd be willing to send her records. The study is not a drug study, and only requires a copy of all Jenelle's treatment records - therefore we won't be heading to New York anytime soon. They will be comparing the two drugs Jenelle has been using, and the overall quality of development on each drug. Let me tell you, I have a ton to say about ACTH - yuck!
And then, just as things couldn't get worse, Jenelle started to have a fever of 102 on December 23. Knowing that a high fever could trigger seizures, I emailed Dr. Phillips to tell him she may have the flu, and asked if we needed to look for anything. He called me back and told me to get her to the ER immediately, as the flu and her seizure disorder was potentially fatal or could lead to a permanent seizure state. Did I mention I was deathly ill with the flu? So, Brett took Jenelle to the ER, where she tested positive for the Influenza Virus that had been going around and was placed on Tamiflu. She hasn't had a fever since and it appears we caught it in time.
So, 2003 will not go out without a real fight, but in a way, I'm glad we're all getting the sickies over so we can start a fresh new year! We hope your holidays were great and that your New Year is fantastic!