Wednesday, October 5, 2011

October Update

We were doing so good, two and a half months with out a seizure when out of the blue they started again. We were on vacation in the Outer banks at the aquarium when the first one came, we were expecting more because normally Isabel never just has one isolated seizure. Thankfully though, they stopped for the day. They next day she had three more. The following day, two more and so on for the rest of the week. She had a total of eight seizures throughout the course of our vacation. After speaking with her neurologist (Dr.F), he upped her Topamax so she is now on 45mg in the morning and 45mg at night along with 3.5mL of Keppra in the morning and at night. Thankfully she was seizure free Saturday and Sunday but she had two more on Monday so Dr. F squeezed us in for an appointment yesterday. He added yet another medicine to her regimen...Lacosamide. We are starting off on a low dose and slowly increasing the amount. I would really like to see her off of the Topamax because she is really staring to loose her appetite. She lost one pound in one and a half weeks. I know that doesn't seem like a lot but when your only 25lbs, it's quite a bit of weight! He would also like her and us to get a blood test to check and see if this is genetic or benign. He is beginning to believe that it is genetic which really makes me sad for Izzy. I know things could be a lot worse and I am in no way complaining, I just wish that I could make it go away. The blood test is not covered by insurance and runs around 1200$...yikes! He would also like to admit her to CHKD at some point to get a 3-4 day EEG. Dr. F is amazed that Isabel is not a zombie with all of the meds that she is on, in fact she is just the opposite, she is a nut! That girl has more energy than Caden half the time!
In other news speech therapy is going very well! She is making wonderful progress and we both love her therapist. Hopefully we can get these seizures under control and this new medicine will help her out a bit!

1 comment:

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