My body temperature has been a few degrees below normal since I was a teenager... I hit 94 degrees the first time at 14. I generally feel very cold with it, but sometimes when it drops very low I feel very overheated. I've had tons of doctors/nurses think their thermometers are broken until I explain I have dysautonmia. My family doctor knows if I am even at 99 degrees I am REALLY sick, since I am NEVER higher than 96 degrees otherwise. it's really tough to explain to walk-in doctors that my case is serious at 99 degrees though since they want to compare to a "norm" fever! :P I am used to it now, having lived with it for 22 years... I'm sorry about your son... I know it doesn't help much, but know that he can learn to live with it. My doctors feel it is something I can live a long and healthy life with, we just need to take precautions like extra layers in winter and monitoring...He will have to let docs know about it too. I hope all goes well with your son.
Hey,
Just popping in really quickly with a few links that might be of interest. Sorry I can't sit here long enough to post more in depth. :-( See my "update" post for explanation. PM me if you have more questions and I could try answering from my cell phone, though for some reason I haven't been getting my email alerts for my PMs like I'm supposed to, and I apologize in advance that my typing from my cell phone can be kind of sloppy.
Chapter from one of the best autonomic textbooks: (Click the link with the page # that pops up from this search to open the chapter to read it)
http://books.google.com/books?hl=en&lr=&id=lrEHxR-GsJ8C&oi=fnd&pg=PA3&dq=primer+autonomic&ots=PDpoJMBql5&sig=_2f58yg7aCYbA2CFy9_GwezK9mA#v=onepage&q=incidental%20hypothermia&f=false
This article is behind a paywall but your doctor can likely access it and maybe you can ask him/her to get you a copy; it looks like it may be relevant to what happened with your son:
http://journals.lww.com/pec-online/Abstract/2003/02000/Pediatric_nonenvironmental_hypothermia_presenting.9.aspx
This genetic (not familial dysautonomia, something else) form of dysautonomia mentions hypothermia, but I would think the docs in Cleveland would have likely already ruled that out by catecholamine testing ... putting the link here just in case anyway:
http://books.google.com/books?hl=en&lr=&id=sNQ7IA3y2kAC&oi=fnd&pg=PA61&ots=IVY9HK-mnI&sig=WR6MwxnyWCQQKAs9vOB7Sm_D3Qc#v=onepage&q&f=false
Sorry that's all I can get right now, I really need to get back in bed. This concerns me though, so please PM me if you have questions and I'll do my best to work from my phone in bed.
I hope he's feeling better now and that you get some answers from the Cleveland docs! Hugs!
-Heiferly.
They did not suggest that. They asked if his Cleveland doctors have done any MRI's, and we said yes,--of the brain with and without contrast, but they didn't say anything else. They just didn't really know how to deal with this because they aren't educated on the dysautonomia.
I am going to email his doctors in Cleveland tomorrow and update them on the episode and I will definitely run that by them.
Thanks everyone for your responses. As much as I don't want other people to have to deal with this, it is good to know we are not alone.
At the hospital, did they do or suggest an MRI scan be done of your son's hypothalamus gland, as it is supposed to be what regulates temperature, to see if there was any abnormality there they could detect?
I am so glad he is better now. That had to have been scary for all of you. Many of us have our temps run sub normal I think. Mine does it too and partly because of low thyroid. It often is in the 95.6-97.6 range. If it gets much below that you are approaching hypothermia and I feel chilled. I also feel like 98.6 is a fever for me. I have read in the autonomic literature some where that many people with dysautonomia have low temperatures and running one at above normal has more impact.
I have been told that if you feel cold with a fever that means the temperature is still trying to rise. Could the opposite be true and if a temp is trying to lower further you feel hot?
I found this explanation of why people shed their clothes even in snow when they suffer hypothermia. Perhaps the same mechanism is at play here.
http://wildernessmedicinenewsletter.wordpress.com/2007/02/07/hypothermia-paradoxical-undressing/
Hypothermia is anything below 95 degrees so good you got your son in and I am so relieved he is doing better now. Marie
Christy, sorry your sons having such a tough time. When my body temp drops I have terrible hot flashes. I also have a tendency to feel terrible hot sometimea in the cold even though I am fairly cold blooded abdomen usually shivering. My neurologist says its because my body thermostat is broken. Not much help but your sons not alone with this crazy temp thing. Hope he feels better.
Beema