We loved our new neurologist!

I really LOVED our new neurologist AND the resident who is working with him. He says with her history he wouldn't have chosen that 2nd medication as an option.  We are so glad to see it GONE!

I was really UNHAPPY to discover through the course of these meds she has lost HALF the weight she's gained since she has been home. :(

  The doctor showed me the EEG reads from when Sonnet did the overnight monitoring in the hospital. Apparently when the report was written up it makes Sonnet's seizures look more impressive than they actually are. When one looks at the EEG readings they weren't all that significant according to the neurologist. The seizures she has on the medicines have been more frequent and way more severe than what she was having before. He told me that some kids just don't tolerate anti seizure medications.

So what to do? We now have two different types of rescue medicines. One to use if she has a seizure that lasts more than five minutes, and one to use on an "as needed" basis if she has a fever or illness that seems to spike way more seizures than usual. Our hope is that she will return to her pre-medication level of having just a few mild seizures a day.

Provided that goes as expected we are to concentrate on her therapies and her gaining back the weight, taking a break from any regular meds for six months. We'll address it then and see if we want to try a ketogenic diet or some other course of treatment at that time.

Sonnet's signature smile has been a rare sight when on the medicine.  We're so glad to see it return!

She still has some residual meds in her, but we're seeing less seizures and more of the Sassy Sonnet returning each day. I've missed her so much. Thank you for your continued prayers!