Incognito Mosquito

   Poor Megan.  That's what we always say when we see her get bit by a mosquito.  Poor Megan.  Poor her.  Take what the average person experiences with a simple bite - a little redness, some itchiness, probably annoyance - and multiply that reaction by 5,000 and you've got yourself a Megan-reaction: a few hours of redness, then swelling, then more swelling, then some crusting over, then swelling in areas of your body that were no where near the original bite, then, even more swelling.  Not to mention the itchiness and general discomfort that comes along with losing function of a limb, some digits, or maybe even an eye.
   Yes, poor Megan.  Since she was just about a year old, my sweet little girl has been plagued with an unknown immunodeficiency that we just can't put a finger on.  It started as some strange outbreaks of hives on random parts of her body, and then it would slowly spread - and each time this would happen, I would take her in to the doctor's office.  She endured many visits to the clinic, many many throat swabs, and countless rounds of antibiotics.  The first time they told us she had Strep, so they prescribed amoxicillin and her symptoms vanished.  But sure enough, the hives would start again....either on her arm, forehead, or her body, and each time, the treatment was antibiotics.

   Then one day, she exploded into the worst anaphylactic reaction I'd ever seen - my little girl was unrecognizable as her whole body filled like a giant puff ball, both eyes swollen shut and her limbs barely fitting in her clothes.  I prayed and prayed as she wheezed the whole way to the ER and Andy even rushed home from Syracuse that evening to care for her the next day.  We were told by one physician that they suspected Kawasaki disease, a rare auto-immune disorder more common in Asian children, but the ER doctor apparently ruled that out and told us she had a penicillin allergy and treated her with steroids and Clindamycin.  
   It never got that bad again, but Megan made routine emergency trips to the clinic at least once a month after that incident.  At one point the doctor told me she had MRSA (methicillin-resistant Staph aureus), at another, mastocytosis (mast cell dysfunction).  At Walter Reed her case became the excitement of the infectious disease and allergy clinics, where doctors studied her like a monkey with 6 arms, referring back to their books and bringing in new people to consult with.  Last June, she had some weird lesions in her mouth that prevented her from drinking or eating anything for 2.5 days...not quite sure if it was Hand-Foot-Mouth disease or if the hives just invaded her oral cavity, but I just never could quite figure all this out.  She had me - and all the docs - stumped.  Nothing could be confirmed, and thus began my long and frustrating journey to discovering what it was exactly that was harming my child.

Just hours before her full-body swelling reaction

1 day post-steroids to reduce the inflammation

   We made several visits to Walter Reed, and the allergist there was skeptical about testing a child so young.  He nodded like he really cared and listened to us, and even gave long, drawn-out explanations for things I felt were irrelevant to why we were there in the first place.  He told us to take a log of what foods she was eating, but I knew in my heart that this was not the problem because I'd been doing that for months by then and no common triggers could be found.
   It became a regular thing for Megan to develop some weird rash at school, and her teacher would often text me pictures of it before I would text back, "Yes, please, 2.5ml of Benedryl, thank you."  I just hated having to medicate the kid like that.  But bless her school teachers for understanding that she wasn't infectious towards other kids....otherwise Megan would be well on her way to earning herself a DDS for how many times she would have had to accompany me to class.

Random hives at school

More random hives at school

   This year we discovered that Megan has some serious bad reactions to bug bites - mosquitos namely.  Just recently she got bit near her eyebrow, and her entire left face swelled to where she could not even open her eye any longer.  Andy nicknamed her QuasiMegan.

 
   Supposedly it's called "Skeeter Syndrome" - bad allergy to mosquito bites - and although I don't believe that was the original cause for all those outbreaks in her past, I definitely agree that she exhibits signs and symptoms of having this disease.  As if we needed confirmation, just two days ago she was bit again by a mosquito (yes, we definitely covered her in mosquito repellent and it still happened) - in exactly the same location, and sure enough her face began swelling with no signs it was going to go down on its own.  So we headed to the urgent care clinic yesterday and got her treated with a steroid shot - again - and today, she is doing much better.

Megan checking out her pulse ox

   Sometimes I feel like I'm peddling backwards trying to figure things out - I have researched hours and hours on the internet, in my textbooks, in my classroom lectures - and it's nearly impossible to piece everything together.  I even reviewed the inflammatory cascade pathways of all the mediators and factors that play a role in bringing about the reactions, as if that would magically bring a diagnosis into my mind.  I'm not sure if it's one specific disorder, or if it's multiple things acting together to make it present the way it does, or if this is the type of inflammation that studies have shown previews before signs of autism.  I'm not sure how serious her immune system is failing her, or if she just has super-freakishly hyperactive mast cells that she'll one day outgrow.
  BUT - and this is a big "but" - I do know one thing.  And that is - hands down, my Megan is one brave little champ.  She has endured so many needle sticks, pokes, prods - and has reacted well to various problems ranging the entire spectrum of the "happy / sad face" pain chart.  Just yesterday when she received her shot, we were told by nurse Lauren that Megan was her "best patient ever. Seriously." Meg just sat there, took her shot, barely glancing down at her leg where the injection was - then sat up and happily accepted her popsicle reward.  Lauren was super impressed, as was I.  Despite her random flare-ups - and some are really, REALLY bad - Megan has been surprisingly herself most of the time.
   Cheerful, carefree, and totally untroubled by these slight nuisances that have disturbed her early life.

QuasiMegan enjoying a bike ride

Enjoying her Pedia-sure popsicle

   Hopefully one day we'll get down to the bottom of this - it may be a while, but in the meantime, may we just say how very proud we are of our sweet little Meggie!  Hang tough, Champ!