Well Cailyn had her latest appointment at Johns Hopkins yesterday and yesterday morning she started up with a few seizues so that was disturbing. It had been since June 25th since the last time so that was the longest stretch I think.
When we talked to the doctor we explained her latest behavior and where we see she's delayed and has regressed. He upped her Topamax to 5ml twice a day and said with the delays and everything else that's going on the Epilepsy is probably secondary to something else anatomical in her brain -- problems with the wiring. We won't know until they do another MRI which they probably won't do until she's 2 years old when her brain and the wiring is more developed and they can get a better picture. So that was horrible to hear, but again I think deep down I knew something was not right.
So for now he prescribed physical therapy and will probably add in another drug to the mix over the next few months. He also wanted to do some blood work and that didn't work because they stuck both arms and couldn't find a vein so more torture for a baby in the midst of a day of seizures. I can't really talk about all of this now but wanted to update the blog for those who keep tabs. Have a nice day.
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