Periodic Fever Syndrome

living with periodic fever syndrome

You will remember that I wrote this post a few weeks ago, and now it seems that perhaps strep is not what Johannes had at all.  I feel sick and nauseous even writing this and I wondered wether or not I should or could.  I have a giant lump in my throat that makes it hard to swallow as I sit here typing, but I’m hoping by putting it all out into the universe it can help us, help Johannes, or at the very least perhaps help someone else dealing with a similar experience.

Ever since Johannes was 18months he began to have frequent episodes of fever.  Usually they lasted 3-4 days and would start around October often ending in February or March. They would come regularly every other week and for most of it he would have some other symptoms too.

Year 1 he had fevers with some redness in the ear, and sometimes croup.  We assumed it was ear infections and croup so the doctors prescribed antibiotics or puffers.

Year 2 he had vomiting and we assumed it was a stomach bug.

This year, year 3. He can speak well.  He tells us what hurts and what doesn’t.  This year these fevers seem worse, they come every second week as well but they last 5-6 days and the intensity is much greater.

We tested him for everything including strep throat.  The symptoms and tonsils look like strep throat but the tests all came back negative.  He is now on round two of antibiotics for the season.  On Saturday his fever came back.  We took him to the Pediatrician who put him on a new antibiotic incase it was in fact strep but the first round didn’t kill it.  But she also mentioned Periodic Fever Syndrome.  A name given to a set of various autoinflammatory disorders that cause high fevers that come on a regular basis.  There is no specific test for this, nor is there a cure.  Depending on the frequency of the fevers it can be debilitating to the child and the family.

Everything in my gut tells me Johannes has this syndrome.  Everything we’ve been experiencing, the unknowns, the questions, the negative test results, the lack of response to antibiotics, the joint pain.

I can now tell when Johannes will have one of these attacks.  He looks tired and exhausted, has dark circles under his eyes and sleeps 3-4 hours in the afternoons.  Shortly there after he will tell me his stomach hurts, sometimes he even vomits.  Food tastes funny to him and he has no appetite.  Sometimes his throat hurts, sometimes it doesn’t.  But the fever is horrible and greatly reduces the quality of his life.  He sleeps poorly and cries in pain.  The Tylenol and Advil do not seem to work as his fever comes back even before the medicine has worn off.  The Tylenol makes him throw up.  And the vomiting caused a tear in his esophagus that now results in him throwing up blood.  Its bad.

On Saturday the doctor gave him Prednisone, a steroid.  It broke the fever immediately.  This is in itself considered diagnostic of this condition.  So now I wait to speak to her again and determine next steps.  He needs to be under observation.  But I have been observing him for years, and its always the same.  We just always thought it was other things, other infections…and now I understand why the antibiotics never worked for him.

This syndrome is genetic.  My brother and I did not have it, but my parents did.  Sometimes children outgrow it, but not everyone.  Sometimes removing the tonsils and adenoids stops the fevers, or at least reduces their frequency, but not always.  There’s no cure and there isn’t enough research being done.

I realize this is not a terminal disease.  I know there are much worse things out there that my child could have, or suffer from, or experience.  But he’s sick.  He suffers and it breaks my heart.  Its frequent enough that it feels like he is missing entire months of school during the fall/winter.  And his quality of life is diminished.  He misses hockey and swimming.  He can’t go to birthday parties and visits to Santa.  I want to help but I can’t and that stings most of all.  Because I’m his mom and I can’t help him.  I wish I had this instead of him.  He’s only three and a half.

I know we’ve been dealing with this for three years and that now we have a name for it.  It doesn’t make me feel better and it doesn’t make me feel reassured because ultimately we will need to simply manage this condition as there is no definitive cure.  And what does this mean for his future?  I don’t know that either.

Dinosaur Terrarium Making with the Kids

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Johannes and his friend Ben have to make a handmade gift for their class Secret-Santa, and every year is a bit of a struggle for me as I’m one of the least creative people out there.  Like most little boys his age he loves dinosaurs, and lately he’s been asking me for a plant in his room (just like Michael and I have in ours), so my friend Adam, creative behind Crown Flora Studio,  suggested that he teach Johannes and Ben how to make a terrariums.  Not just ANY terrariums… but  dinosaur terrariums!  Really how fun is that?!?!

Yesterday was the day.  It turned out to be a major snow day after all so keeping the kids home worked out really well.  They loved planting, and pouring gravel, and chasing around Adam’s doggies.  It was a really neat way to spend the morning and Johannes decided he would actually like to keep the terrarium for himself after all that.  So I cheated and bought one of the ready-made ones for the class gift and let Johannes keep the one he made for his room, because he worked super hard at it.

Thanks Adam for the lovely day, and the latte for me :)

St. Nicholas

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I am Romanian so we celebrate St. Nicholas Day on December 6th every year.  I love being able to pass on this holiday tradition to the boys.  I started it a few years back with Johannes, and now its time to bring little Magnus in on all the fun.  The evening before the boys put out their boots by the front door, and if they’ve been good, St. Nicholas brings them a little gift.  If not…then a lump of coal awaits.  The boys get Christmas pajamas and a tree ornament every year (I write their name and year on the bottom) and this year St. Nick threw in a holiday movie too.

Around the House

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Its all about the holidays, warm scarves, snuggles in bed and floor play for Magnus.  Johannes is as in love with his baby brother as ever, maybe more actually. He rushes to his room as soon as he wakes up and doesn’t leave his side all day unless he’s off to nap.  Magnus on the other hand is finally figuring things out and he learned to roll himself onto his side and giggle.  The roll is still a work in progress, but when I think about how fast the last 2.5 months have gone by, it boggles my mind.

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New this week:  my two new ASOS blanket scarves, a Target bench and throw, Magnus side rolls and three days in a row of well timed double kid naps….also meaning mom-win.

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p.s. thank you so much for all your sweet comments and well wishes both here and on Instagram about our rough couple of weeks.  I am so humbled by you guys.