I'm not sure if it is a jinx, or just Murphy's Law, but usually after sending a positive update about Jenelle things change. I guess that is the way this roller coaster goes - ups and downs.
Jenelle had a seizure lasting 10 minutes yesterday morning, was given Diastat (her emergency medicine) and was fine for the rest of the day. Prior to the 10 minute seizure and within that same hour, Jenelle had many other lengthy seizures all around 4 minutes in length. I called UCLA and left a message telling the nurse that I didn’t think we could take this for another three weeks or more (assuming it takes that long to get onto the Diet.) It seems her seizures are getting longer, and I was afraid for the days ahead. I also called the Kidney Doctor from CHOC and asked to be placed on their cancellation list, explaining that Jenelle's seizures were out of control and I wasn't sure that things wouldn't get worse before our April 5 appointment.
The nurse from UCLA returned my call, and said Dr. Shields was concerned with the new seizures and wanted to increase her Topamax again to the last dose we were at to see if that stabilizes her. We both agree this sudden onset of seizures is most likely from her reduced dose of Topamax (she was literally on half the dose she was previously taking.) It is tricky because we do not want to lower her bi-carbs again, but we also do not want her going into status because her seizures are uncontrolled. After 3 days of this increase, I am to update Dr. Shields on Monday, and we'll go from there. The nurse said that there was a small possibility that if Jenelle's seizures do not improve over the weekend and continue to be like they have been this past week, Dr. Shields may want to admit her to the hospital at UCLA for some tests and observation. We are pretty sure all of this is being caused by the medication changes, but there is a small chance that "something new" could be happening. Fortunately, Dr. Shields will be around through the weekend and all next week. Usually after Jenelle is given Diastat the frequency of her seizures decrease… hopefully this last dose will work throughout the weekend while we increase her Topamax.
On a side note, we are scheduled to meet with Dr. Charlotte Dravet from France in the afternoon on Friday, April 1st (no fooling!) I have also been working with the Epilepsy Foundation to help them prepare Jenelle's "PowerPoint" presentation for the Pediatric Epilepsy Conference next weekend. Would you believe that Jenelle's medical records take up almost 3 full binders already?
And some good news. I finally got our HMO to assign a "case manager" to Jenelle. You would not believe all it took to get that. I had one customer service person take down my request for a case manager (including details on Jenelle's history), and then another rep told me the company did not have any positions like that, nor could he find my previous request! The day after I was told they didn't have "case managers", I got a call from Jenelle's "new" case manager who works for our HMO. She took down her history, and told me she would now be handling all of Jenelle's authorization requests, as well as communications between her medical group and the insurance. She explained that the purpose for having a "case manager" is so that one person is assigned to Jenelle, and that one person will know her history and thus we won't have to explain things like why we go to UCLA instead of CHOC. In theory, it sounds perfect - haven't used her yet, so the jury is still out on that one! ;)
It goes without saying - thank you for the continued prayers and positive thoughts for Jenelle. To those of you who celebrate, Happy Easter! I'll keep you posted!