We had appointments on Monday and on Wednesday of this week. Both days were in Milwaukee so it was a good deal of driving. Luckily we had the nice new van to make the trips. Also, Lee was able to stay home with Zoe both days so that made things a lot easier for all of us. She did well, and even managed to take a good amount of milk by bottle on Wednesday.
Monday we had a neurologist appointment. We think he is still having seizures. They are going to arrange more long term monitoring again, only this time it will be done at home rather than inpatient. They can even get everything done locally rather than having us make the trip there and back and there and back. He will just go about his day normally...well as normally as possible with a bunch of wires stuck to his head.
His neurologist seemed kind of put out when he learned that Jackson was having several tests related to his dysautonomia. We had asked him previously if there was anything that could be done about it and he had brushed us off. Grrrr.
So Wednesday was his testing day. We were scheduled for an EMG and an NCV, which measure how the muscles and the nerves in his body are working as well as a head CT to compare to the ones he has had in the past. The doctor doing the testing decided that he did not need the EMG, which was ok with me since that can be a painful one. It appeared that the big groups of nerves in his body were working normally except for the ones that make him sweat. They tested his arm and his leg and they could not get any sweating which is definitely abnormal.
The doctor also said that most of the nerves responsible for dysautonomia are smaller ones that could not be measured with that test so just because most of the results were normal it doesn't mean everything is actually working normally.
One funny thing was that the foot he was testing was very cold (as it often is) so he stuck a little thermometer on it. It was not registering at all so they thought the thermometer was not working, but it turned out that his foot was just too cold to register. This is a foot that had been inside a shoe and a sock inside a warm car and a warm waiting room. Poor kiddo!
The CT went well. He was able to stay still without sedation and it only took a couple minutes.
Hopefully we should have the results pretty soon. I am interested to hear what this all means as far as treatment.
As we were getting ready to drive home, I asked Jackson if he wanted to watch Blues Clues. He was just looking at me like "Mom, we're in the van, we can't watch TV. Don't try to trick me." So I put on the Blues Clues DVD for him and he thought it was pretty cool...he was laughing and screeching as we were pulling out of the parking garage.
