Yeah Jessica has trouble in the heat (but we don't have much of that over here in the UK !! - we haven't taken her abroad) and we think she's more ataxic in the cold. I know other parents have mentioned problems in the heat. Before she comes down with a cold or virus she's far more wobbley and may have problems talking. She started walking late at 3 with help using a frame, but is starting to catch up. From what we've read all glut1 kids have great personalities. We stopped Jessica's seizure medication on her first birthday as we thought it just masked her symptoms. The diet is fantastic. I worried a lot about her head growth - but that doesn't appear to be a problem. Jessica says she hates glut1 - but it makes her even more special.
I promise you'll meet some new friends on the yahoo site and be able to learn, give advice and share all things glut1.