7/6/12

Quick update

Lukas had 105.3 fever on Saturday. One of the scariest hours of my life as we raced to get it down. He has not been the same since.

I took him to the pediatrician on Monday. He walked liked this:

Pediatrician saw him and said he was fine. Lungs were clear and he tested negative for strep, RSV, and flu. But she saw the changes in his walk and his stumbling. He fell twice in the exam room. So incredibly sad to see.

We're almost a week out from the fever now and he's essentially the same. He's been very aggressive, anxious, and fussy all week. It's made therapy this week quite the challenge and has led to tears often. I just don't know how to help him and it is so frustrating.

We moved our mid-August neuro appointment to next Tuesday. Hoping he can figure out why his gait changed. Also hoping for a decision on sending us to Cleveland for a full mitochondrial work up soon. Our second opinion thought that many of his issues were autism related but that he thought having some indepth genetic testing done and an evaluation by Cleveland were a good idea.

We started with a new behavioral therapist who doesn't think that Lukas has autism either. This brings the total of neurologists and developmental pediatricians who think he has autism to three and front line therapists who question diagnosis to two. No action taken on any of this right now. Frankly I'm just trying to stay afloat and hoping and praying these changes to his balance and walk aren't permanent.

In other news, we had a pipe burst in our garage yesterday and are sporting a 1X1 hole in our garage wall that goes out to the outside. Our roof leaked last week too during the tropical storm. Seriously. When it rains, it pours. Literally. :(