Wednesday, June 26, 2013

Fever of Unknown Origin

In nursing school, there was a saying "if you hear hoof beats, look for horses and not zebras".  This means look for the common illnesses such as ear infections, strep, urinary tract infections, pneumonia, etc. before considering more rare disorders/infections. The thing is, if you are an overly anxious mother who happens to work in medicine, you only hear zebras.  

Photo: www.livescience.com



Bear has missed a fair amount of school and therapies and play dates due to random, recurrent fevers.  These fevers are not all that exciting.  They are low grade--ranging from 100.5-101.2.  They typically last less than 24 hours and present mostly in the mornings within a few hours upon waking.  Her only symptoms include decreased appetite and agitation.  There is no pattern to these fevers.  They occur anywhere from 2.5-7 days apart.  

At first, I wasn't tracking them.  Then I noticed that there seems to be an inordinate number of fevers in a short period of time.  I thought perhaps Ellie just ran hot.  Maybe 100.5 is her normal temperature.  Twice daily tracking proved otherwise.  I thought perhaps it was the thermometer so I bought another one just to be sure.  Two thermometers cannot be wrong.  I was not paranoid. For a while I just chalked it up to a 24 hour virus.

someone forgot to tell her that she is supposed to be "sick"

This Mama Bear doesn't tend to rush The Chunky Chicken to the doctor at the first sign of fever.  I like to wait.  And wait.  And wait.  Yes, I avoid the pedi unless it is absolutely necessary.  I do not like doctor's offices (yeah, I know.  I went into the wrong field).  In the past 31 days, Ellie has experienced 7 different febrile episodes.  Seven.  Only one of them lasted more than 24 hours--it lasted the 3 days.  That was when I bucked up and took her to the PCP because she might be, you know, ill.  Ellie sauntered into the office with two baby dolls and her plastic stethoscope.  Both baby and Ellie's physical exam was baseline.  As in normal.  As in they couldn't find anything 'wrong' with her. They drew a CBC and it looked okay.  We were told to follow up with Infectious Disease [ID] if these fevers continued for 2 more weeks.  The Bear is and enigma.  Yay!





What do you do when the hoof beats are not horses?

You start to look for zebras.




Seeing as our pedi was at a total loss, I went to the best medical source possible--Facebook!  I got some great differential diagnoses and started to monitor Ellie's fevers more closely.  I got the idea to call her old allergist/immunologist who also referred us to ID.

When Ellie's fever return after 56 hours, I lost it.  I was actually stuck in the Austin airport for several and I mean several hours while trying to get to a wedding in St. Louis.  I had my iPad and a speedy Internet connection.  With too much time on my hands near gates 13-17, I consulted the best medical manual around--Google.   

In case anyone is wondering, if you type in "frequent fever Down syndrome" you get:

LEUKEMIA

When clearly my daughter really has malaria or nephrotic diabetes insipidus or PFAPA.

Which brings me to this important life lesson: avoid Googling!!!!!


Upon returning to Austin and reuniting with the my baby girl, I immediately set up an appointment with Infectious Disease. I was certain I would have to wait a few months but they worked us in for the next day. . . today.  I felt a bit ridiculous walking into the clinic today--yeah, my daughter has fevers but she looks great and acts great and seems perfectly healthy!  

Of course, this is the kid who once had coxsackie, a staph infection, and sinusitis all a the same time and was excitedly signing "play".  She is also the kiddo who got pneumonia while on an antibiotic. This kid rarely acts sick. 

Our visit went alot like this:

Dr: Does she have a cough or runny nose?

me: No 

Dr: Does she have any drainage from her ear tubes?

me: No

Dr: Does she have any swollen joints?

me: No

Dr: Any diarrhea or vomiting?

me: No

Dr:  any throat infections, problems breathing, runny nose, stuffy nose, foul smelling urine, swollen lymph nodes, stomach pain, throat pain, head pain, wounds that don't heal, or rashes, etc. etc. etc?

me: no, no, no, no, no, uh she is nonverbal and cannot tell me what, if anything hurts

Dr: Does she have any bruises or petechiae?

me: She always has some petechiae.  It really isn't impressive.  More like pressure petechiae, see? [I show the Doc her waist line and shoulders--areas where her waist band and seat-belt left petechiae]

Mild petechiae from laying on ear, tourniquet during blood draw, and crying/screaming


The physical exam goes like this:  normal, normal, normal, normal, normal, normal, hyperactive

This is all GOOD!!!!

Of course we went to Quizno's after her blood draw


The doctor leaves the room and comes back in with an list of labs to run--CBC with manual review, ESR, C-reactive Protean, all sorts of immunoglobin levels, strep pneumonia serotypes, uric acid, lactic acid, metabolic panel.  Essentially she is checking for inflammation and her antibodies.   The doctor is confident that based off of Ellie's physical exam and the CBC performed at the pedi's office last week that her fevers are not the result of something hematologic.  As in NOT a leukemia.  Whew!!!!  Happy dance.  She does think that these fevers could be immune-related. Oh goody [sarcasm].  It does make sense. . . I sort of forgot that Ellie had SNOT from January to April thanks to a monstrous sinus infection that just would not quit--hence the adenoidectomy.



Five vials of blood later, I have decided that my daughter's awesome physical exam and lack of symptoms point her to just being an "odd duck".  

A FB friend once told me that "every kid seems to have 'thing'".  Maybe these fevers are Ellie's "thing". 

I am grateful that she looks great.  I am.  Believe me.  Yet, I am peeing my pants over here with anxiety.  


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20 comments:

  1. oh honey how terrible for you! hugs! when do you get any results x

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    1. Thanks for the hugs and loves, Jane. I don't know when we get the results. Typical blood work takes a few days but since we have more fancy stuff, I don't know. I hate waiting! I do feel in my gut that everything will come back normal though :)

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  2. I would be worried too. I hope it turns out to be nothing.

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  3. Great news!!!!!!! Have been thinking of you both!!!!

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    1. Thanks, Jenny. I have been thinking of Super Joe!

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  4. Replies
    1. Notice that I included your words of wisdom :)

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  5. We heard hooves and had Zebras. So many times, zebras. I understand your anxiety.

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    1. :-( You have experienced way too many zebras :-(

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  6. I'm glad it is not hematologic! :) That Dr. Google... No good!

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    1. Yeah, that Dr. Google likes to jump to conclusions.

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  7. Thanks for the update... And google is never our friend no matter what but for some reason I can't ever help myself.. I always end up turning to google... Keep us posted... Ours kiddos just like to keep us on our feet:D

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    1. I know. . . Google is like a gossipy friend. You cannot help but tune in and listen! Evil Google and I know better! Yeah, I guess Ellie thought that life was getting a little boring over here.

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  8. I am glad it isn't the big L, but hope they are able to find out what is going on. I would be a nervous wreck, but you know your child and you have the background to decide when to pursue further testing. Her immune system did take a beating for all those months. I hope it turns out that her body just needs a little extra time to recover from everything.

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    1. I hope that you are right. . . she got hit pretty hard with that nasty sinus infection and then pneumonia later on. I imagine that all is well and she is just "recovering".

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  9. I'm so glad it isn't the dreaded L word (I can't even type it out because I have this fear of it and typing it would give me bad juju or something). I really hope the ID peeps figure something out so that you and Bear have peace of mind. And I do agree--I think all kids, especially kiddos with Ds just have a thing about them that is unique but not harmful. Keep us posted!

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  10. Wow, Ellie is a true enigma!!! Yikes, I really hope it's nothing! Glad the appointments have gone well. She's a trooper!!

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  11. Hi! I'm new to your blog, and just found this post. I have two sons, 4 and 2 years old. 4-year-old is typically developing, 2-year-old has Ds. Two years or so ago, my 4-year-old was diagnosed with PFAPA. It was very high fever (104-106) that wouldn't respond to meds, and lasted several days. Came almost every 30 days like clockwork, though it skipped if he had a cold or something similar (I figured his immune system was too busy to worry about a fever that month). Anyway, we treated it with a steroid, and the fever would disappear very quickly. Overall, it lasted about a year, and he hasn't had an "episode" in a year now, but I still carry the steroid with me on trips, because I don't want that to crop back up and me be unprepared. Other symptoms for him: lethargic, lack of appetite, swollen nodes in his neck, and mouth ulcers (sometimes). He was fairly textbook, but it did take me yelling out "ZEBRAS!!" a little to finally get to the ID doctor. Hope the doctors figure out what's going on with your girlie soon! Not only is it worrisome, but it's a hassle, too. Trying to explain to playdates that yes, it's a fever, but probably not contagious. :)

    Thanks for the pics of the petechiae! Every time I Googled it, I could only find the really bad cases, and I've been trying to find what "normal" petechiae might look like. Glad to have found your blog!

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