We drove down to Long Island this morning for my family's annual picnic. We were very excited about it, we knew Oliver would love seeing every one and feeding the ducks. He was very tired, cranky and stiff from the minute we got him up. He slept in the car the whole 2 hours (very unlike him) and was crying as soon as we took him out of the car. His body was so stiff, he could hardly lift his head, his neck seems especially tight and he wasn't picking it up. When he tried, or we tried to help him he'd cry like it was acutely painful. He napped on me for over an hour and then would wake and cry and his body was curved into a tight C shape. He seemed miserable, uncomfortable and we were worried he was dehydrated because he hadn't been drinking or had any wet diapers.
So we decided to come back home at 2:30, we hit miserable traffic on the Cross Island Parkway and didn't get home till after 5, but Ollie was sleeping on and off the entire way, very dazed and out of it, but I got him to say "mama", "dada", and "hop hop" (bunny) so he was a little more "with it" than he was at the picnic.
After talking to the neurologist on call at Connecticut Children's we gave him an extra dose of Baclofen to help relax his stiff muscles and she thinks it's quite possible that he had a seizure during the night because that would cause his extreme tiredness today. And while he is currently on a seizure medicine, they started him on the lowest possible dose, if he did have a seizure they dosage will be increased. He was scheduled for an EEG to check for seizures on 7/3, but now it may be moved up sooner.
We hope it was a seizure and not an extremely quick progression of the disease, that seems impossibly fast, I mean just last night he could sit up, talk, interact and control his head and today he can hardly do any of those things. We would be devastated, we have so many beautiful plans for this summer.
He's currently fast asleep on Chris' chest on the couch.