Tuesday, December 30, 2003

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!

Tuesday, December 09, 2003

We met with Regional Center today to discuss the plan for the next 6 months for Jenelle (her IFSP, individual family service plan.) The meeting included Jenelle's Occupational Therapist, her therapist's Department Head, our Regional Center caseworker and the head of the Early Intervention Program at Regional Center. It was great to have a meeting of the minds, especially minds that have so much knowledge about Jenelle's issues and needs. While I had mentioned I wanted to find an "infant development" program where Jenelle could be "in center" for therapy, they helped us realize it might be too big a step for Jenelle at this time. We are going to increase her therapy at a one on one level in the home, and may try to schedule an additional session that can be "in center" so we can see how she responds to that environment. It's tough because we need to set challenging goals, but at the same time we must take baby steps in order to reach them. If we feel Jenelle is ready for an "in center" program sooner than 6 months, we can re-visit her plan and make adjustments accordingly.

After the meeting this morning, I took Jenelle to the lab for more tests. Poor little baby had to give urine and blood again. She did very well and didn't even cry or scream out when they poked her arm for the blood. Not sure if that is good, or if it means she is just too used to all the poking and prodding! One test is going to be sent to Baylor University for reading, and we most likely will not have the results for another 6 to 8 weeks.

Monday, December 01, 2003

I'm starting to have a love-hate relationship with Jenelle's Neurologist, and I'm never going to send another update saying Jenelle hasn't had a seizure, because I definitely jinx it! Jenelle continues to have more seizures and remains on a lower dose of Pheno and the same Vigabatrin dosage. Brett and I think that the Vigabatrin is probably helping her spasms, but not the myoclonic type seizures that we are seeing.

The day before Thanksgiving just before 5:00p.m., Dr. Phillips called Brett to tell him some of Jenelle's metabolic tests were back and he wanted to run some new tests. We couldn't get to the office in time to pick up the lab work, so he said he'd just mail it. Of course, I didn't take the call and had tons more questions - which I knew I'd worry about over Thanksgiving! I spoke to Dr. Phillips today and he said that one of Jenelle's tests from he last hospital stay came back indicating an elevation in the level of some hormone. Apparently this was different from a test previously run a month earlier, so he wanted to re-test her. Fortunately, the test is only urine, but the results could take 8 weeks. When we talked, I explained that Jenelle was still having seizures, and he said to increase her Phenobarb. Because we want Jenelle off the Phenobarb so we can give the Vigabatrin a chance, I choose to ignore this instruction. Jenelle's seizures remain constant, and are not increasing, so we'll stay the course. We see Dr. Phillips again on December 19.