March 25, 2008 Update

We spent the day in Raleigh today at the neurologist's office. Amanda had an EEG and then an appointment. All went really well. We figured out a lot of things. First, the head drops continue to be behavioral and are no big deal. The little seizures with her eye getting stuck that she has had while weaning off Topamax are not uncommon when switching meds and are also no big deal. She has not had one in over a week, which is nice. We bumped up her Keppra a week ago and that seems to be working well. She also has no big spikes on her EEG which is also a great sign. The other issues we have had over the last 3 weeks (crying, sensitivity to light, motion, an noise etc appear to be migraines. These have become more common since we got off Topamax but we are blessed that Tylenol and Motrin seem to work well on them. Hopefully they will become less frequent once her body adjusts fully to being off Topamax.

As far as Amanda's behavior goes, she has been a nut for the last 2 days (ever since we gave her some Tylenol and Motrin for a mild fever - yes you heard that right -- she had a fever and she did not have a seizure!!!!!!!! Yeah!!!!!!). Anyway, she has been giggling non-stop, pulling hair, walking all over the place (with help), doing a great job practicing her sitting and standing skills, playing with her toys, rolling all over the place, squealing with delight, eating like a horse, etc. It was amazing to see the transformation in her when the fever and migraine went away. She is one happy camper now and tons of fun! She was a wild woman in the EEG today as well. She was pushing, pulling, rolling, yanking my glasses off, yanking her glasses off, eating with great precision (reaching across her body to pick up small things), and laughing her head off. She thought the EEG was playtime.

Afterward, we got to see a friend from a CPA firm and then came back to Wilmington where she has been riled up ever since. She is having a great day! We hope all of you are having a great day as well. By the way, happy belated Easter! Also, Dan had a great birthday - he is 29 yet again! Amanda loved his birthday cake. I will have to post a picture of her all covered in frosting.

The other HUGE news is that Katie came home from school today with news that she is now reading on the 7th grade level!! She just loves to read! Tonight, she read an entire 120 page book! Way to go Katie!!!! We are so proud of you!!!!!!!!!

God Bless!

Susan