We got up this morning at 4:30 am to drive down to the Mayo Clinic. I am really hoping to learn more about his low temperatures and if it is from hypothalamic dysfunction and what that means. I like the term dysregulation better. :)
So far we've done a 1 hour EEG where they used a hat with electrodes instead of gluing on individual electrodes. I failed to take a picture, but it was cool. Parker is starting to have staring spells again. We are doing another 24+ EEG later this week so hopefully we can figure out what is going on and keep him seizure free.
He had a really long one today - a full 3 minutes of staring with his tongue sticking out, right arm raised and unresponsive. I captured it in video and showed it to the neurologist. We will probably be going back up on meds again.
Apparently there are not doctors here that "specialize in hypothalmic dysfunction" like I was hoping and had heard, but she at least does have another patient that is manifesting in similar ways. I wish there was some way I could talk to that other mom. Silly HIPPA laws... It is incredibly, incredibly rare. My other neurologist, and the one at the U of M have never seen this before.
We are supposed to be life long learners, right? This little guy is keeping me spry.
Wow, sounds like a loooong day. Sorry to hear about the scary seizure. It's good you recorded it and are at the Mayo Clinic now. I hope there are answers for you this week. And I hope you somehow run into this other mother experiencing what you're going through. Sounds like it will be a long week.
ReplyDeleteSorry your going through that. I hope the docs can get everything under control. We miss you guys!
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