“I’m bored.” BB#2, 5.5 years old, as we were getting in the car at the end of his last day of school.
Gonna be a long summer…
“I’m bored.” BB#2, 5.5 years old, as we were getting in the car at the end of his last day of school.
Gonna be a long summer…
“I can’t believe it’s almost the end of the school year. Why does time move faster the older you get?” BB#1, 8.5 years old, going into 4th grade in September.
I wish I knew.
“You know I refuse to take out books based on TV shows, put it back on the shelf.” – overheard at the library
No doubt the mom who said this to her little girl the other day has the best of intentions, but I couldn’t disagree more with this rule. You are in a library, and your child is excited about a book she’s looking at and…you refuse to check it out?!
There are probably a few reasons for this parent’s approach to book choice. I’m just guessing but perhaps she was thinking it would save her from having to read aloud what is probably not the most compelling piece of children’s literature out there. Or, maybe she hoped to discourage her child from asking to watch the TV show itself. Maybe she believes strongly in sharing high quality texts with children. I can understand all of these reasons. But my thought is, the little girl was interested in reading the book. They were in a library filled with lots of other books—if they took out several, does it really matter if one of those was arguably a piece of fluff reading?
Think about what you like to read. Maybe it’s dense literary novels. Maybe it’s technical documents. Maybe it’s in-depth non-fiction on Very Serious Topics. Or…maybe it’s not. Maybe it’s fashion magazines. Maybe it’s blogs. Maybe it is the sports page. Maybe it’s genre fiction. Or maybe, like so many of us, it’s a bit of everything. As a reader, you have the right to personal choice: shouldn’t children*, if we want them to grow to see themselves as readers?
Right now BB#2 has a thing for Pokemon graphic novels. He can’t really read them on his own yet, so guess who ends up reading them? And I admit, I find them deadly dull. I’ve even been known to drift off while reading them aloud. But I still get them out for him, and I still read them. Why? Because he loves them. Pokemon graphic novels get him excited about reading. And isn’t that the point? I suspect it’s unlikely he’ll still be reading them in two or three years, or when he’s a grown up. He’ll have moved on.
And, they are not the only books he’s exposed to. Our usual haul from our weekly trip to the library includes whatever picture books draw him that day; a few non-fiction texts, often about cute animals; picture books that I pick up, often based on recommendations from educators or writers I follow on Twitter; sometimes a movie or TV series on DVD; something in French for his brother; a couple of easy-reader type books; and often a high-quality novel that will be our bedtime read aloud (we’re currently reading Charlie and the Great Glass Elevator by Roald Dahl).
As I’ve mentioned before, we also have a large collection of books at home. We receive kids’ magazines in the mail. And Pokemon cards have been hugely motivating for BB#2 in terms of reading and numeracy—board games too. So if he wants to take out some book based on a TV show—if that is the book that has him wanting to be read to, or to read, today—hells yes, add it to the pile! Better than whining for a toy from that show, no? Or watching the show?**
*With the understanding that certain content may not be appropriate for certain children at a certain age.
**In all honesty, I’m an everything in moderation kinda mom, and freely admit that we do watch TV and play video games here, in addition to reading and lots of other stuff.
“We had a lot of free time today. Because we had a supply teacher. And supply teachers are clue–oh yeah. Well, the ones without kids are clueless. And the ones that are new.” BB#1, 8.5 years old, when asked what his favourite part of the school day was.
What have I gotten myself into?
It was somewhat of a relief to have a name for what was happening (and to know I wasn’t crazy for thinking a fever for no apparent reason every two weeks wasn’t normal). But I see the diagnosis as sort of a catch-all. He doesn’t have one of the genetic fever syndromes, but what he does have has no known cause or cure. So really, there are still more questions than answers.
Don’t get me wrong, compared to some of the things it’s not, the things the doctors originally tested for, PFAPA is the least-worst thing he could have. It’s not life-threatening, he’ll grow out of it, and it won’t have any long-term impact (so we’re told—in all honesty, we worry his growth has been affected by not eating several days out of each month in these crucial years). But “short-term”—if you can call going on four years short-term—there has definitely been an impact.
First of all, seeing your child ill is never easy. Knowing he’ll be sick again within weeks, and there is little you can do about it? Is worse. My husband and I have missed a lot of work and school between us–I was very close to deferring teachers’ college for a year. Yes, we had a nanny at one point while this was going on, and that was a huge help, but naturally kids want a parent when they are ill—we wanted to be with him too, and we didn’t feel it was fair to leave the burden of a sick child on our childcare provider on such a regular basis. And of course, the many doctor appointments meant time off for one or both of us.
As a family we’ve missed a number of holidays and big occasions, or had to split up so some of us could put in an appearance. So far, BB#2 hasn’t missed too much school—JK/SK was every other day, and most weeks he only went to school two days anyway, so he missed a only day here or there. But he’s starting full-day grade one French Immersion in the fall, and days and weeks of missing school will be much more problematic. Socially though, he’s missed more birthday parties than he’s attended. His illness has meant his brother has had to miss out on a number of things too, particular when my husband is away and I’m on my own with both boys. And though his condition is not contagious, some of our own friends seem to avoid us in the days after an attack, just in case. I suppose I can’t blame them—having a sick kid sucks and everyone wants to protect their own family.
So what were the treatment options? We could continue treating the symptoms, and wait for him to grow out of it. Or treat the fevers with prednisone, which can stop the symptoms within hours, but may cause the episodes to become more frequent (this is also considered somewhat diagnostic—if the fever responds to the prednisone, it’s definitely PFAPA). Or we could opt for a tonsillectomy, which has been known to work in some cases, but is still no guarantee. None of these seemed ideal.
We saw surgery as a last resort. Why put him through an invasive procedure with no guarantee it would even stop the fevers? But I had no desire to be dosing my preschooler with prednisone once or twice a month either, especially not when it meant risking even more frequent fevers. We opted to wait for him to grow out of it.
Then after several more months of watching him suffer, we decided steroids might be the lesser evil after all. We filled the prescription—and watched in amazement as the symptoms disappeared. Unfortunately, he had another episode days later. The next month, the same thing. Yes, it worked to treat the symptoms, but it was as if his body refused to be fooled. He still got sick, more often. Not a viable long-term solution, when frequency was the biggest issue (though we did take a vial with us to Disney World one year, just in case. Fortunately we did not have to use it.)
So we finally asked for a referral to an ENT for a tonsillectomy. But a funny thing happened in the months while we waited for a surgery date: nothing. No fevers. It was too much to hope he’d grown out of it, but if he was only sick every few months instead of every couple of weeks? We could deal with that. That’s life with kids, no? We cancelled the surgery.
It seemed as though we’d made the right choice. He didn’t have an episode for eleven months straight. And even the few times he was ill after that, it wasn’t clear if it was PFAPA, or just regular kid stuff.
But this past Christmas, not ten days after our yearly check-up at the rheumatology clinic, where we’d shared the happy news that he seemed to have gotten over the whole thing, BB#2 got sick. All the same symptoms. And since then? He’s had six episodes in five months. We’ve missed Christmas dinner at my mom’s, Easter dinner at my mother-in-law’s, and last week, he missed his best friend’s birthday party for the second year in a row.
So we’re back on for a tonsillectomy, if we ever get a surgery date (the initial consult is not for three months! love our Canadian health care, but it can be a bit slow moving…) And this time we’ll go through with it, and hope it actually works. Because we’re exhausted, and there’s nothing else left for us to do, no other way that we know of to help our child.
Our youngest was sick again this week. And I’m sick of saying that. But, this is our life. Bear with me, this could get long.
When he was around two years old, BB#2 got sick. A lot. Yeah, pretty typical for a two-year-old, you’re saying. Except he didn’t go to daycare, and though his older brother had just started JK, he wasn’t getting sick, at least not at the same time or with the same frequency. And #2 wasn’t getting colds or coughs—he’d just have this crazy high fever with no warning, be lethargic and have no appetite for several days. Then he’d be completely fine. I’m not one to run the kids to the doctor only to hear what I already know: rest, hydration, medicine to bring the fever down. The last thing I wanted was to be placated with a script for unnecessary antibiotics. For a while I figured it was his body doing what it was supposed to do: fighting off germs. Most of the time we just treated him at home.
But he seemed to be sick all the time, and we started to get worried. We were missing out on holidays, swimming lessons, cancelling plans on the weekend, and missing work. We started to take him to the doctor or a walk-in each time. At first they brushed it off as viral. He’d usually be perked up on ibuprofen or already over it by the time we got in to see our own doctor. It was winter, and no doubt she saw many such children brought in by over-cautious parents every day. Strep was often suspected, though the swabs (when they were taken) were always negative. And still he got sick.
So I started to track the episodes. And every two or three weeks seemed like way too often for a toddler to be getting sick, especially one who was at home with a nanny, who was rarely exposed to other kids, and who never passed his illness on to anyone else in the house. What’s more: I realized could predict his next episode almost to the day.
A couple of times we did give him antibiotics, just in case it was strep. But during one round, I took off his jammies and freaked out when I discovered his entire body was covered with hives, and his joints were swollen. He wasn’t bothered by it, but it looked awful. Ever since, I’ve been adamant about getting an actual diagnosis before giving the BBs antibiotics. This is harder than you might expect.
Everyone had a theory. His brother was bringing germs home (even though he wasn’t getting sick nearly as often.) Someone suggested perhaps our nanny was a carrier for something (despite the fact she’d been with us for a year before this all started). A few suggested having the house tested for mold (but would an environmental issue cause fevers? And no stuffiness or coughing? Besides, we were living in the same house we’d lived in the previous two years, so why would he be reacting now?) Someone even suggested it was my milk (because I was nursing in the early days—and thank goodness, since breastmilk was sometimes the only thing that kept him from dehydration.)
I worried my green cleaning wasn’t enough. I pitched sippy cups and reusable twisty straws that might be harbouring germs, and started soaking water bottle tops in vinegar before washing. I replaced his pillowcase daily and became (more) obsessive about replacing toothbrushes. And nothing changed.
In desperation I went online. I didn’t find much about kids with regular, predictable fevers, but eventually I came across something that sounded almost exactly like what we were dealing with: PFAPA. I even mentioned this as a possibility to our doctor, but she wasn’t familiar with it. It seemed a long shot.
Then one day I was finally able to bring him in to the doctor at the height of his fever, with no medicine masking the number. Seeing him lying there, burning up, almost unresponsive, with no other symptoms to explain it, she asked if he was like this every time. Yes! And she sent us to the hospital right away.
There were lots of blood draws, a referral to a pediatrician, lots of going over and over my months of calendars tracking his episodes, hearing things I had already read in online journal articles myself. Eventually we ended up at a major children’s hospital, where more tests, including a genetic work up, were done. The diagnosis: PFAPA.
In other words, I had diagnosed my own kid on the interwebz.
So what next? Read Part 2