I saw my new specialist for CAPOS in December, it was a routine visit. I always go to these appointments with excitement, yet leave with no new information. She did preform the same tests that my old doctor did. Which was a bummer, because I always go to my appointments with anticipations that something relevant will be discussed. ,
This time is was somewhat happy, she did tell me something new that I was not expecting. I said somewhat because I filled out two very long questionnaires and she did not even mention anything about them.
She mentioned that I should avoid getting a fever and minimize hot tub usage to 2 minutes.
Like, what? Why? Can you expand that? –I uttered in disbelief.
Sure, she said, its very simple. Picture your blood vessels, and the flow of blood in your body. Potassium and Sodium are vital to your well being, and if you have fever or in hot tub, those chemicals will be melted off.
She actually said “leaked off”, but I prefer melted.
Now, at the time of the appointment, I thought that was not that “important” because I could not get my head around it… How can a hot tub affect my potassium levels?
After extensive research today, I have switched my opinion! And the images on google are pretty graphic too.
The way I see it is that her comments are more focused on fevers because the fever is located in the head, right. And if I get a fever, the potassium and sodium will melt off and I would experience irreversible damage. This is specific for me because of my CAPOS diagnosis.
So, that is pretty darn important!
I asked our son’s neurology specialist, who echoed the same concerns, avoid fevers and hot baths.
She also mentioned I need a flu shot! I’m on my way!
She did mention that there are only 30 reported cases of CAPOS in the world! Four are located in the lower mainland! My doctor does not work with them, but she does have connections. So she is going to get me in touch with them!
This should be a good place!