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.  

Scared

Today was supposed to be Ellie's first day of preschool and I had big plans to photo bomb this blog with proud mama bear photos of my little baby girl headed off to school with her little penguin backpack.  However, Ellie really really really didn't want to go to school today.  Already, The Bear is trying to find ways to weasel herself out of the classroom.  In fact, there is a strong possibility she will miss Thursday as well, the little stinker.

Okay, to be fair, Ellie was/is sick.  We have been so fortunate that Ellie has rarely been ill.  She has a rockin' immune system thanks to me passing on my hard core antibodies and thanks to her fascination with gnawing on the dog toys and shoes.  Sadly, when Ellie does get sick, she does it will full force (i.e. last year's coxsackie virus that turned into a whopping sinus infection and a nasty cellulitis on her leg).

The Bear is strong.  The Bear is feisty.  The Bear will survive.  Mama, however, is a big wimp and is still a bit traumatized.

Bear before things start to go down hill.

A fever.  It all started with a puny little fever yesterday morning after a rough night of sleep.  I cancelled therapies and snuggled with Ellie during gazillion episodes of Signing Time!  Ellie is not a snuggler, but rather a climber so I embrace these small moments of snuggling.  My little girl needed me and I could provide.

Last night was rough with minimal sleep.  I laid next to her for half the night comforting her and then at 5:30am, I felt it.  I saw it.  The seizure.  In the heat of her fever, her left leg twitched for 2 full minutes.  It felt like an eternity.  I placed my hand on her leg thinking it was a tremor and that I could stop it with tactile pressure.  Not so. The twitching continued.  A sign of a seizure.

Febrile seizures are common among the 6 months to 5 year-old age group.  I read somewhere that about 1 in 25 children will experience a febrile seizure at some point during an illness.  It does not mean epilepsy and there is really no treatment.  I am serious, you do not do anything unless it last longer than 10 minutes.  That would be a long 10 agonizing minutes and I feel horrible for the parents who must witness that. The thing is, Ellie's seizure was one-sided rather than full body--called a focal seizure.  Apparently, this is less common and more concerning when there is a fever involved as it can be a sign of meningitis OR it could just be a regular febrile seizure.

Believe it or not, I was not overly worked-up over this new development as Ellie was only acting irritable and clingy.  I did call the pediatrician hoping that they would look a little harder for her fever source--UTI, perhaps? (we were in on Monday were the pedi saw perfect ear drums with patent ear tubes and heard fabulously clear sounding lungs.  Strep test was negative).  Oh did I mention the hives?  Two big whopping bright, beefy red hives just popped up out of no where on her legs and one appeared during the visit.   Seriously, what was going on with my peanut?

Within 20 minutes of having out at the pedi's office , Ellie's temp jumps up 5 degrees while Motrin was on board and she becomes more difficult to arouse.  She fell asleep after her urinary catheterization and I had trouble waking her.  I was banging on her back down her spine and she remained asleep.  Her bloodwork was also little wonky, not overly alarming, but when added to her fever, the focal seizure, and some tiny patches of petechiae, meningitis became a possibility.  I only know horrible horrible things about meningitis and my heart plummeted for I know how quickly a brain infection can progress.  Fear grips me.  I hold Ellie tighter.  My throat closing up, I called Andrew and tried to appear calm.

An ER visit.

By the time I arrive to the ER, Ellie Bear is complaining like a little banshee.  This is excellent for it means improvement!!!  Motrin had kicked in and her fever lowered by one degree.  Another great sign.  Plus, she half-hearted fought the blood pressure cuff--not like my usual Bearity Bear, but better than before.

I know that clinically, my daughter doesn't look horrible. Yet on paper, the symptoms are down right scary.  That is why you always look at the child first and foremost. 

Sometimes it is really hard for me to back away from my medical knowledge and not panic.  It is hard to look at my daughter objectively and not as a petrified parent so scared of losing her beloved baby.  I picture the Zebras.  In the medical world, we say "when you hear hoof beats, picture horses and not zebras."  That means your differential diagnoses should be the common things and not the rare--i.e. a fever could be from an ear infection or strep throat and not leukemia.  A headache is a headache and not a brain tumor.  I love Ellie so much and the thought of ever losing her paralyzes me.  When she is ill, all I can picture are the zebras.

My Ellie perked up just in time to reassure myself, Andrew, and the ER physician.  Her petechiae was not too impressive (almost nonexistent you could say).  Her platelets were low, but not in the critical range.  Ellie started to try and walk.  Her clinical picture greatly improved and the ER doc didn't feel the need to torture her with a lumbar puncture.  Instead, more blood was drawn and a CT scan of her brain was completed.  Her brain scan is normal and we are still waiting for blood culture results.

Returning home from the ER, I heard my little girl utter "dada dada" and then I knew that everything would be okay.




*For all of my Facebook friends who offered prayers and reassurance, I thank you from the bottom of my heart.  I appreciate your kind words and thoughts.  Thank you.  Thank you.  Thank you.*

**I actually wrote a post a few days ago, but haven't published it yet about my big fear of losing my daughter.  An irrational fear, but real to me.  Then today happens. Scary, but a happy ending.  May all of us hug our little ones a little tighter tonight and whisper those precious words of "I love you".**

Petechiae

*I apologize in advance for some missing photos - I used Photobucket for free as a means to store my photos and they are now holding a few hundred pics of mine for hostage unless I pay for an expensive plan.*

This is what petechiae looks like:

update 2014: petechiae from screaming

Note the bright red "freckling" around her eyes and across her cheeks.  These are "popped" blood vessels (capillaries) that appeared while Ellie was screaming during an ENT visit.

What exactly is petechiae and how did little Miss Ellie Bellie Bear come to have petechiae on her wee little face?

Definition: 
petechiae appears as small, red/purple/brown, pin-point dots on the skin as a result of bleeding from capillaries (tiny little blood vessels) under the skin's surface.  To differentiate between a rash and petechiae, the rash disappears when pressed on while petechiae remains.

Petechiae on the ear lobe from sleeping on it funny.

Why are so many of us in the Down syndrome community freaked out by rashes that could possibly be petechiae?

One word: CANCER or more specifically - LEUKEMIA

Children with Down syndrome are at a greater risk for leukemia--as in 20 times higher than the general 46-chromosomed population . Those who carry that extra 21st chromosome are at a greater risk for acute lymphoblastic leukemia (ALL) and acute myeloid leukemia (AML) with most cases of AML developing before the age of 5.  It is why our children must have routine CBC (complete blood count) labs drawn at well-child visits.

Sometimes, petechiae is sign of leukemia in our children because it suggests poor clotting.  The capillaries burst and leak into the surround skin, thus causing those pin-point dots.   Poor clotting can be the result of impaired platelet function (a component of our blood that works in clotting).  The nasty abnormal cancer cells start to crowd out the normal blood cells which include platelets.

Decreased platelets =  decreased clotting function  = bleeding under skin = petechiae

DO NOT PANIC!

Petechiae can be the result of so many things--not just cancer.  See Toddler Bear above--screaming popped some of those delicate little capillaries around her eyes.  Forceful vomiting can do the same thing.


Other causes of petechiae:

• Forceful coughing 
• Vomiting
• Screaming (ie Ellie getting cathed)
• Medications
• Infections such as Mononucleosis, Measles, and enterovirus
• Platelet Disorders
• Vitamin K deficiency (infants)

Mechanical Trauma:

This is from a tourniquet used in Ellie's most recent blood draw.

Injury: 

This is the result of a little fall at a playground where she bonked the side of her forehead aka temple.

Infection:

Some viruses such as enterovirus and mononucleosis (the "kissing disease") can cause a petechiae-type rash.

In the bacterial infection of step throat, petechiae may be seen near the tonsils or the roof of the mouth.

Now, I am the paranoid mama bear who sits quaking in my combat boots due to Ellie's propensity to sprout petechiae at any given moment.  Routine CBCs have been normal.  I am slowly starting to calm down and not jump to conclusions every time Ellie Bear gets a patch of petechiae on her face, under her arms, or on her ear lobes of all places.  My daughter is fair-skinned and some of her little capillaries are visible to the naked eye on her cheeks and neck.  Our pediatrician and myself believe that Ellie is just going to be a petechiael kind of girl.  Will we continue to monitor her blood cells?  Absolutely!  Will I panic with each episode?  No.  . . . well, in theory no.  

References:
The Mayo Clinic. Petechiae
National Cancer Institute.  Childhood Acute Lymphoblastic Leukemia.
Cinicnnati Children's Hospital Heart-Related Syndromes: Down Syndrome (T21)