Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.

Saturday, February 13, 2010

Here we go again...

Unfortunately, Abby has started having seizures again. She had a couple on Wednesday and Thursday. Our plan was to wait and see if they stopped, and schedule a video 23 hour EEG for next month. On Friday, however, she had 13 seizures. Our neuro's office sent us to the hospital, but when we got there and talked to the neuro, we decided that Abby didn't need to be admitted. Abby had a rather high dose of generic Keppra last month when she was sick. Since then, we have been slowly lowering the dose to a level that will not cause dizziness, but will keep seizures at bay. Apparently it is now too low. We also refilled her prescription on Monday. Apparently, pharmacies get generics that can be 85-115% absorption (as opposed to 100% for the name brand). Each month, they buy the cheapest one, so the absorption rate can change from month to month. The refill we got on Monday could have had a much as 30% less of an absorption rate as the month before, which isn't great when her body is still adjusting to the medicine. That seems a little crazy to me, but what do I know? It was the perfect storm. I hate that Abby had to have seizures, but at least now we have know that she cannot tolerate generic AED's.

Now, we raised her dose a little, and we are giving her only the name brand Keppra. We could do that at home, so we definitely didn't want to stay in the hospital if it wasn't totally necessary. We are also giving Abby Klonopin, which is a pretty fast acting AED, to prevent seizures until the increased dose gets in her system. The Klonopin does make her unsteady, so she is unable to walk again. We are praying that she will only be on the Klonopin a few days, and she will recover much quicker this time. This was her 3rd visit to Kosair this year. We're hoping it is her last. The more we learn about managing her seizures, the fewer trips we will have to make.....I hope. Of course, Abby has been a good sport. The Klonopin makes her a little agitated, but she likes it when we hold her up and let her "walk" around the house. Of course, she's loving her movies. Thank goodness for Little Einsteins!

1 comment:

  1. Sigh. I am so sorry, although I know it is just part of the learning process. You and Wes are doing such a great job with her. I hope Abby's seizures are under better control now and she is feeling better. Sending lots of hugs to you and Abby and we are praying for all of you.