I really appreciate your reply to my post about my daughter's fever. I am very interested in learning more about your hypothalmus involvement. Since this is where thermoregulation originates and since her patterns are so screwy, I think there might be something to this for our daughter.
Was there a test, MRI or other, that was used to diagnose it? What kinds of scans can show brain involvement? She hasn't had any yet. Her recent CT's(normal results)were of chest & abdomen and they were trying to rule our sarcoidosis(sp?).
The mere fact that her temps don't follow the normal pattern of low in am and higher in pm make me wonder if there is a cause beyond fighting infection. Also, because she functions reasonably well as long as she is 101 or below I think there must be another cause.
Any additional thoughts you may have are SO appreciated!!
Thanks!
Suzy
You said...
"Was there a test, MRI or other, that was used to diagnose it?"
Actually I had to figure this out the old fashioned way.. by reading and thinking. There were no tests for me.. just a theory I had from studying... and I went from there.
I got help by going to a specialist who was able to reactivate the part of the brain that needed a "jump start". He was able to awaken those sections that were "sleeping" or shut down due to the long term illness.
This specialist.. a neurologist with chiropractic training.. did a detailed exam and documented the neuro problems.. many I didn't even know the name for or knew I had.. except in my own words.. like... "I have trouble swallowing." He examined me and noted I had 1/2 of a tongue that was paralyzed. When I heard that.. I THEN knew why I had trouble swallowing.
It took about a month.. after being sick for 18 years.. to get the brain working on its own to where I was able to completely stop taking supplements and medications such as thyroid meds (after needing them for about 2 years prior).
I was also able to stop all hormones too that I HAD to take due to severe problems. The improvement in that area was not expected at all (by ME).. and he didn't promise me anything... only that he would "try" to help.
Being able to stop the meds was a good "side effect"... no doubt.. and I haven't had to be on any of those meds again for the past few years. Saved me LOTS of money too by not having to take so many meds.
The brain .. when stimulated gently (no pain involved and no drugs).. decided to act right and began doing what was needed to correct MANY things that had gone wrong.
I did have an MRI of the brain (before and after) that had shown white matter lesions.. but after treatment.. some or all of them were cleared up. The tests wasn't needed for the treatment or diagnosis.. someone else had ordered them... but it was interesting to note the changes.
You said..
"What kinds of scans can show brain involvement? She hasn't had any yet. Her recent CT's(normal results)were of chest & abdomen and they were trying to rule our sarcoidosis(sp?)."
My OPINION would be to save your money and at least try to be evaluated by a specialist. If they need tests.. they will tell you. Mine didn't.. he could tell from the regular neuro exam and my presentation of how I looked and felt, what was wrong. (I have at least three people in my family who are allergic to the dyes used in testing.. and I don't volunteer to do tests due to the risk).
You said... "The mere fact that her temps don't follow the normal pattern of low in am and higher in pm make me wonder if there is a cause beyond fighting infection."
It is a good idea to check out all possibilities. And beings she is worse when the temps are abnormal.. even more important... in MY opinion. I know it would be REAL nice to have her feeling good month round... if possible.
I am not sure where you are in VA.. but if you email me.. with your screen name in the title... and your request.. I will get you some doctor contact information if you might be interested.
I don't know of any better or easier or cheaper way to try to "fix" neuro problems.. and the initial exam is worth the visit.. just to document some of the actual problems that she may not be able to put into words... which therefore, can't be addressed.
I hope that helps?
Email me for more info.. but keep in mind my computer is acting up.. so if you don't get a response.. it may have quit again.. so try later. OK?
Best wishes.
