Wednesday, June 22, 2011

Seizure Counting

Even though I was really dreading it, I felt the need to count Levi's seizures yesterday so I can give the doctor a good idea of what's going on.  It's somewhat draining to watch so closely and keep a good count of seizures, and I decided to pay close attention from 8-8.  When he had the video eeg he had a little over a hundred seizures.  I knew they were much reduced, but really had no idea of a number.  What I found was surprising and very encouraging!  From 8 to 8 he had 40 spasm seizures, only about 5 of which clustered, and the highest cluster was only 5!  And he had 15 of the new ticking seizures, which I think are breakthrough focal.  I gave him the last dose of Baclofen at 6, and just after 8 he started having a lot of seizures!  I didn't add these in my count, and really wonder if it was caused by the Baclofen.  It will be interesting to see what happens now that he is completely off that med.  On the down side, he cried off and on for 4 hours last night!  His muscles hurt, he is teething, he has less room in the spica cast.  The poor kid!  Tylenol and Motrin work for the most part, but for some reason he hurts more in the evening.  I'm praying that these seizures stop completely now that we are off Baclofen and they can prescribe him another cp med that will take his pain away.  Until we know what's going on with the seizures we don't want to start him on anything else. 

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