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8 year old possible dysautonomia
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8 year old possible dysautonomia

During my 8 year old daughter's wellness check, it was discovered that she had a fever.  She has always been healthy and the kids who I could look at and know if she had any fever.  The week prior to this, she had what I thought was a stomach virus and vomited twice after a being at a camp with over 500 kids each day.  To sum up a long story, her fever lasted for 10 weeks.  The fever was low-grade, wasn't all day, but was everyday.  She had numerous tests, (i can provide those if needed) all of which were negative.  Her Rheumatologist mentioned dysautonomia, but we never followed up in that area because her fever resolved.  She did have some mild GI symptoms, occasional loose stools.  She had some random pains also.  Just within the past 2 weeks, she started seeing, "glitter" and most recently a, "purple light" while lying in bed.  She didn't see it when her eyes were closed, but did when they were open.  She had an appointment with a pediatric ophthalmologist today, who said this is a classic precursor to migraines.  Is it possible that all of this is related to dysautonomia?  Everything has seemed to come on so quickly for such a healthy, very intelligent, athletic girl.  She has been through so many tests because of her fever, had so many blood draws, and has had to miss school for doctor's appointments, that I really don't want to put her through more tests or appointments if it isn't necessary.  Is dysautonomia likely, and do I need to pursue having her seen by a specialist?
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875426_tn?1325532016
It sounds like your daughter contracted something at camp.  Did she get any mosquito bites while there?  If so, did she get tested for West Nile virus, which has been diagnosed in 48 states this year?  

Migraines can be a part of dysautonomia, but this may not be what your daughter has.  I've not read anything that says fever is a typical symptom of dysautonomia.  (See PM)

I wonder if what with the stress of camp and being ill and doctor visits and blood draws, it may have lowered her immunity.  Stress can do that.  It can also be a trigger for migraines.  But if she gets her first migraine, a brain MRI to rule out any serious cause is something you may want to pursue (versus a CT scan, which gives radiation).



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Thsnks for your reply.  She has had a bone scan, which didn't show increased activity anywhere in her body, including her brain.  When I look at symptoms of dysautonomia on other websites, I see body temperature regulation specifically listed.  The rheumatologist she was referred to at Cincinnati Children's Hospital is the person who first mentioned the term dysautonomia to me, after consulting with other doctors on her case.  Because her fever lasted for 10 weeks, she had seen several doctors, including her pediatrician, a rheumatologist who consulted with his colleagues, a gastroenterologist, an infectious disease resident, and a pediatric ophthalmologist.  I am very thankful that the fevers have resolved, but I am still concerned since she is having random pains in her body and now these, "lights," which are precursors to migraines.  I don't want to put her through unnecessary testing, but I want to be sure I am being her advocate by pursuing this if need be.  What type of dysautonomia has body temperature regulation issues, and what are the other symptoms involved, specifically, in that particular type of dysautonomia?
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875426_tn?1325532016
I have seen where people posted who feel cold with dysautonomia and I believe had low body temperature but had not run across anyone who said they had fevers due to dysautonomia.  I'd be interested to see if you found any sites that list fever- that would be something I was not aware of.  There's a long list of resources about dysautonomia here on medhelp and I've not been exhaustive in my own research.  I've focused more on the P.O.T.S. and I.S.T. as these are things I have.  

Here's a link if you want to take a look to see if fever is listed on any of the resources:
http://www.medhelp.org/tags/show/24603/Dysautonomia?section=health_pages

  The hypothalamus gland, located in the head, is believed to be responsible for temperature regulation in the body.  After a bone lesion was discovered in my chin, I had a 'bone scan with spect' of my whole body to look for anything active in the bones, but if that's what your daughter had as well, that is not the same thing as getting an MRI of the brain.

I recall for a time getting low grade fevers as a younger adult for a time that happened in the afternoon but I think a doctor thought this could be normal... though I'm don't remember for sure now what their explanation was.  I did not associate it with dysautonomia though and no one suggested it to me.

With all those doctors she saw, did they test for West Nile virus if she had had any mosquito bites?  West Nile virus is said to cause flu like symptoms which can include fever, body aches, and headache.  The reason I ask this again is because you say your daughter went to camp.  It might be that the vomitting had to do with eating something that disagreed with her at camp around the same time?
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Avatar_f_tn
My son used to have 'hot spells' where he would want to stand in the snow or cold in shorts because he was hot.  He has now gone the opposite direction, his temperature drops to 94 or 95 (once 93) and his other symptoms really amp up(dizziness and nausea).  I have read posts on dinet.org where some people have said they have continuous low grade fevers.

Migraines were one of my son's first symptoms, before that he had abdominal pain, nausea and vomiting.  After several GI tests came back negative, he was diagnosed with abdominal migraines.  My son's symptoms started when he was in the 5th grade, with a gradual increase in symptoms over 3 years.  

If your daughter does have dysautonomia, or POTS, the sooner you know would help you know which plan of treatment to start on.  It took us 3 years to get the correct diagnosis and even then 3 more years to get the diagnosis and cause of his POTS.   Just this year(April) he was also diagnosed with MCAS, which is the cause of his POTS.
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875426_tn?1325532016
Thanks for your input on this!  I hadn't heard of low grade temps with dysautonomia before!
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Avatar_f_tn
I'm not sure if a low-grade fever is a symptom. From what I've read, it appears that the, "body temperature regulation" symptom listed is pertaining to not being able to regulate body temperature within environments.  So, if it is hot outside, the body can't keep it's temperature in the normal range, and a fever is a result of the environment.  What my daughter had was completely independent of the ambient temperature.  
So, what I am trying to determine is IF a low grade fever is truly a symptom.  I've read so much information, but unfortunately, none of the information truly explains the body temperature regulation symptom listed.  Not only is it not explained, but the particular type of dysautonomia which has this symptom is never discussed.  I would appreciate if anyone has more scientific information from reputable sites or references that would expand upon this symptom.  
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