I ought to be packing, or preparing lists, or at least sleeping, but as so often happens when I am overwhelmed, I want nothing more than to sit down and sort out my thoughts here. The last few weeks have been very intense: swimming at two beaches, two birthday parties, a memorial day party, graduation parties, dentist appointments, doctor appointments, and another round of confusing illness. Oh, and I'm supposed to be getting ready to take my kids on a road trip to Grandma and Grandpa's house tomorrow for a 21 person family get-together.
In God's grace, he foresaw my weariness and sent two young ladies from our church to my door this morning, and with their help today (folding 5 loads of laundry, making lunch, cleaning up, helping with homeschooling, and toting Elijah around) I am keeping my head above water. We may even be ready for that trip tomorrow.
It is the illness that weighs heavy on my mind again tonight. Last February, during our infamous "February of Fevers" when Emma had pink eye and vomiting, Toby had strep throat, and Elijah had pertussis, Naomi also ran three or four mysterious fevers. Her fevers would come on quickly in the late afternoon, spike high between 101 and 103.5, and disappear by morning. Sometimes just for one day, sometimes repeating the pattern the next day. Headache, jaw pain, joint pain in knees, ankles, and hips, abdominal pain, and a mild sore throat appeared just before the fever and gradually improved over a day or two following the fever. I called our pediatrician after the third episode, but she wasn't at all concerned.
At the end of March Naomi spiked another fever in the same pattern. I took her in to the pediatrician that time, she ran some basic tests for liver infection and UTI (two things Naomi is at high risk for) but found nothing. In April it happened again and I just waited it out, not knowing what else to do.
Last Tuesday, June 5th, Naomi complained after lunch, "Mommy, I have a headache, and my jaw hurts, and my knees and ankles, and my tummy hurts too." I went over everything she'd eaten in the last two days, but couldn't find any culprit. Within an hour Naomi was shivering and piling on blankets and up went the fever to 101. Tylenol only brought the fever down a little, and didn't help her pain much. At midnight I woke to Naomi standing beside my bed. "Mommy, I feel like I'm going to fall when I try to walk," she whimpered. Her fever had reached 103.5. I stripped her to a T-shirt, gave her more Tylenol, and put her back in bed. I checked on her once at 4:00am and she was still hot to the touch.
Naomi woke yesterday (Wednesday) morning with a mild fever, mild pain, and fatigue. She spent the entire day on the couch reading C.S. Lewis' "A Horse and His Boy," cover to cover as well as five "Magic Tree House" books. She ate nothing, and for the first time I can ever recall she didn't feel thirsty. I actually had to force her to drink fluids. I debated all day about taking her back to the doctor, but she seemed stable enough that I decided to wait until a regularly scheduled appointment today (Thursday). Late in the afternoon she began to shiver, the fever spiked over 101, and suddenly, just as we sat down to dinner, she cried out that her tummy hurt really badly. Tears welled up in her eyes and she doubled over in pain, refusing to straighten out to stand or walk. I watched her for a few minutes, then packed Elijah up and headed for the ER with Naomi, leaving the other three kids with Matt.
The doctor listened to my concerns and ordered all the tests I wanted, checking for liver infection, UTI, and strep throat. Naomi cried and hobbled all bent-over to the bathroom to give her urine sample, she cried harder as they put an IV in and drew blood (talk about insult to injury), and I assured her that this was necessary to help her. I felt certain they would find something this time. One hour later the doctor breezed into the room and nonchalantly declared the "good news" that "everything looks normal." When I opened my mouth for more detail he actually cut me off mid-sentence (yes, in the middle of the very first sentence I tried to speak), looked at Naomi and said, "Would you like some juice, young lady? Let me see if I can get you some juice." He quickly left and never returned. We were discharged with no discussion at all.
The nurse with the discharge orders cheerily consoled me, "We've been seeing a lot of fever and tummy aches lately. There's just stuff going around."
I tried to control my anger as I said, "But Naomi's condition ISN'T going around. I've got six other people in my family and no one else is sick! No one else ever gets sick when she runs these fevers. It isn't a virus!" We looked at each other awkwardly for a moment, then she handed me the papers to sign and an enormous packet of utterly useless information on coping with "Pediatric Fever"-- the consolation prize that's supposed to make me feel like I'm leaving with more information than I came in with.
As I helped an unsteady and sore Naomi back into her clothes I noticed a light, fine raised rash that covered both of her knees symmetrically. I considered insisting the doctor take a look, but quickly decided it was pointless, his mind was made up already. I took Naomi home, put her to bed, and she woke fever-free and mostly pain-free this morning. She has acted completely normally today.
Fortunately, Naomi and Hannah were both scheduled for their one-year check-ups today, and their pediatrician was in a listening mood. She heard me out, and was clearly concerned. She suspects Systemic-Onset Juvenile Idiopathic Arthritis (a subset of what was formerly known as Juvenile Rheumatoid Arthritis, and also known as Still's Disease). This is an autoimmune disease that Naomi is at extra risk for since she already has one autoimmune disease (celiac disease). Systemic JIA "flare-ups" can be triggered by many environmental factors and cause inflammation throughout the body including inflammation of the liver and spleen, which would explain the severe abdominal pain. Naomi's presentation is actually quite classic with cyclic fevers, salmon-colored rash, joint pain, jaw pain, sore throat, and abdominal pain. I had suspected this disease in the past when Naomi suffered severe joint pain, but when I linked the joint pain to her consumption of food dyes, and discovered that eliminating the dyes also eliminated 95% of her joint pain, I naively concluded that it hadn't been JIA after all. I now believe that Naomi most likely does suffer from JIA, with gluten and food dyes being two of the primary environmental triggers that set off an inflammatory reaction. She has also apparently developed another trigger that is now setting off the cyclic fevers, and it is my job to track that down, if possible.
It is a difficult disease to diagnose. The doctor wants me to bring Naomi in for more bloodwork at the peak of the next fever, but even then no test is definitive. The CBC they ran last night does show changes that would line up with JIA: low hemoglobin and hematocrit (even though Naomi takes an iron supplement daily), and elevated monocyte percentage indicating a chronic condition, but these changes could be caused by myriad other issues as well, which is probably why the ER doctor so glibly declared everything "normal." Mostly the diagnosis is made from observing symptoms and ruling out other possible causes. It will be tricky to get any doctor to observe her symptoms since there is such a small window of high fever and severe pain. The pediatric rheumatalogist is a four hour drive away from us, and the last place Naomi wants to be when she's in pain is sitting in a car for four hours. If this is the diagnosis we eventually get, the prognosis is uncertain, ranging from "outgrowing" the disease (20-40% chance) to a chronic, progressive, debilitating disease (60-80% chance).
Once again I feel burdened to fight for and protect my daughter who struggles with more medical conditions at age 8 than most people see in a lifetime. But now it is late, and I need to sleep. I have a road trip with five little ones tomorrow, and after that...who knows?