Well, it seems I'm very remiss in updating. Where to begin?
I could have sworn I posted an update since we left the EGG in October. Apparently not... so let's start where we left off.
After Jenelle's EEG, we made some major changes in her medications. Adding back Felbatol (Felbamate) really made a difference... both in seizure control, vocalization and awareness and unfortunately with some insomnia. We had nights where Brett and I were in bed and we started hearing Jenelle's toys at 3AM... only to find that Jenelle had somehow made her way out of her bed, down the hall and into the living room to play. At 3AM. Overall, now that we knew what to look for, we realized how much the Felbatol really controlled her seizures. Since adding it back, Jenelle has not had a tonic or grand mal seizures once! (knock wood!) Once the initial side effect of insomnia wore off, we cruised through the holidays with much seizure control, and lots of fun watching Jenelle be more alert, aware and vocal!
On January 9 we had our follow up with Dr. Tran. Sometime during the winter vacation, we started to notice Jenelle having some break through complex partial seizures lasting 20 seconds or more, but never clustering. When she has this seizures, her eye brows do funny things - I call it the Groucho Marx seizure. Upon describing them, Dr. Tran believes they are complex partial, but not much to be worried about given Jenelle's constant electronic activity. Dr. Tran was pleased with Jenelle's progress, and said that we had room to increase Felbatol (double the dose) to see if that helped the new seizures we were seeing. We also decided to lower the morning dose of Onfi, to help Jenelle stay awake during the day. Unfortunately... I goofed, so we had an increase of seizures recently.
You see, our insurance at my firm changed again on January 1. Knowing we no longer had to go "out of network" for Jenelle, it completely slipped my mind to ask for a case manager when switching from one insurance to the next. With the new written prescriptions in hand, we took them to the pharmacy only to learn that our "new insurance" needed a prior authorization before approving the medications Jenelle was already taking - you know the drill, "We won't approve this, until you've tried X, Y, Z first..." etc. So we had a delay in getting the Felbatol pills when I already decided to decrease Onfi. Great... even more seizures as we waited for the increase to be approved! Finally, we got approval and we were able to get Jenelle on the full dose as of last week. So far, no effect on the new seizures, but we'll give it more time.
So, that is all for now. I'll update with photos from the holidays when I can. Thank you for the continued prayers... we'll keep you posted!