A long overdue update.

Unfortunately I cant update and say Aurora has been seizure free. Its been a HECTIC hell of a month since the last time I posted.

Aurora was put on the Tegretol, which in the end being on it for a couple weeks, it made things WAY WORSE. She didnt have any side effects, but the meds itself made her seizures change, and made them worse and more frequent. So they started to wean her, but at the same time put her on a new drug "Topomax". From the start I was NOT ok with wanting her to take it. The side effects worried me. Weight loss, which Aurora is a skinny minny. And then Cognitive Memory issues!

I had asked them if we could NOT put her on the Topomax, but they wanted me to give it a try. So I agreed. It took me only 3 days to see that this med literally made it so that Aurora's speech and Language was all messed up! She couldnt find the words to use in her sentences... This upset me because Aurora's language has always been great! She has to deal with having the seizures, ambulance rides, IV's, being admitted, EEG's... med changes, the last thing she needs is to lose her memory and not be able to communicate!

This past weekend she started having these weird seizures. She would go to sleep and wake up out of her sleep and her eyes were going back and forth... it was creepy!! So I called the Neurologist in a panic and told them what was going on. This was Friday afternoon at 3pm. They asked me to bring her in to Fletcher and that they would admit her and hook her up for an overnight EEG.

She was so brave. The last EEG it took 3 docs to hold her down and put the leads on. This time she just layed there, cried, was pissed... but let them do it. She kept saying "This is not ok.. this is not ok." but in the end she did it, I was so proud of her!!!! And the docs were impressed! I told her, its much easier when you dont fight!

The night there and the next day of course were hell. I had both the kids, Kelly was at a job interview 3 hours away in West Dover.... so I was waiting for him to get back. He showed up later that night... But we were rooming with another kid who was 2 that had Epilepsy. He also was wicked sick, so he hacked and puked the whole time! GREAT..................

The EEG of course was the worse one yet. It was abnormal... I am waiting to hear of the full results.

They stopped the Tegretol and the Topomax right off that night. The next morning Aurora was back to herself. It took not taking 1 dose to notice how messed that med made her! I was so happy that she was off!

They started her on Depakote, and I havent noticed any side effects.

She went 3 days, and then yesterday night she had 2 small seizures. They only lasted about 10 seconds. So I think the new med is working... and when she gets to a higher dose next week she shouldnt have any more of the 10 second ones either!!! Hopefully it all gets under control!

She has a MRI next week. And then Jan 7th we are going to Boston to meet with a Epilepsy Specialist. We also might talk to a Surgeon down there about Aurora's scar and if it will ever be a serious issue enough for surgery. I PRAY NOT!!!!!

So there is the update.