Neurology update

Yesterday we had an appointment with Ellies neurologist. His first words were when he saw Ellie was, "Mel she looks well, she has grown up" He also noticed how alert Ellie was, how she was using 2 hands to explore and reach out and how much stronger she was. It just reinforced everything that we too had thought. Ellie has changed alot of the last 4-8 weeks and it was nice to hear this from someone who hadnt seen Ellie in a while.

I filled him in on how Ellie was going 'fits' wise & that since her last meds increase the fits that we were seeing 4 weks ago are no longer, however she is till having a few questionable moments every couple of days.

As Ellie is on the maximum dose of both Trileptil and Kepra, are these questionable moments enough to change Ellies meds? I dont think so and neither did Ellies neuro. Yes she still has times occasionally where here eyes roll back, or her mouth does funny things. But they both are quick and not promminent long fits. So the risk to wean her off her current meds and to try new ones brings the risk of decreased seizure control. However if we notice that over time that Ellie is having more prominenet, frequent fits then we may need to look at new meds.

We dont need to be see Ellies neuro till March/April next year... that really is a sign that things are going well. YAY!!!