Neurology Appmt and Neurosurgery Appmt

We went back to the neurologist today. Amanda did not handle the flashing bright sunlight through the car well at all. She had about 25 seizures on the way there. The seizures don't last long but they take their toll on her mood etc. We came up with a good game plan with her neurologist that involves medicines and the VNS. He has a lot of hope for the VNS and we have a pre-surgery consult at Duke on Monday (they had a last minute cancellation and we jumped on it). Amanda's neurologist has seen many patients have a lot of improvement with the VNS so we are hopeful that Amanda will be another one who improves from it.

As far as meds go, Amanda started on her methylprednisone on Wednesday so hopefully we will start seeing some positive changes from that in the next day or two. I also sent in all of the paperwork to meet the FDA compassionate use standards to obtain Clobazam from Canada. It will be available in the US in 2012. Hopefully, we will get to start that drug next week if we can get things processed quickly. The Clobazam has an 18 hour life rather than a 6 hour life like the Diazapam that it will replace. That should allow us to go back to meds 3 x day total as opposed to having diazapam every 6 hours and the others every 8 hours (i.e., we give meds 6 times a day). The 1 am dose is the only one that is brutal in terms of sleep lol. More importantly, the longer life will mean that it will stay at stable levels longer in her bloodstream so hopefully it will be more effective. It has proven fairly helpful for kids with Amanda's type of seizures so we are optimistic it will help as well. We are weaning Topamax since that hasn't seemed to help her seizures much and that hopefully will give her system a little bit of a break from all of the high meds.

So, Amanda's journey continues. She continues to be a brave little girl and we cherish every minute we get with her, even the 1 am meds LOL. She remains pretty happy most of the time and has been showing off her crawling and walking skills. Last night, she took several steps independently and had pretty good balance. She impresses me by how hard she works to shake the cobwebs out and continue to make progress. She is the hardest working kid I have ever seen and continues to be an inspiration.

Thanks for all of the prayers. We know that the Master Physician has her in His mighty hands and we continue to trust in His perfect plan. May you and your families have a blessed weekend.

Also, here are some cute pictures of Amanda and Katie that a friend of mine, Jennifer Simpson took before we went to UCLA. Enjoy!

Susan