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.