Awhile ago I posted an update on Little One's allergies.
Since I've had a few questions from family lately about how Her fevers are going, let me give Little One more reason to slap me with a HIPAA lawsuit someday. Bring it, Little One!
I don't talk about the fevers as much as the allergies, because unlike food allergies, which other people can have a lot to do with making worse/better, there is nothing anyone can do about Her fevers. Not even me. And I'm the mom. I'm supposed to have super-kiss-it-better-powers!
But they are a big part of our lives, nonetheless.
Little One has a glitch in Her immune system that causes Her to spike high fevers about once a month, for about a week. They come with lovely side attractions like vomiting and lymph nodes the size of ping-pong balls. So much fun!
Let me tell you something about Little One. She is tough. I mean, this kid is tough as nails. How much is inborn, how much is building up a tolerance for discomfort after a small lifetime as a human pincushion, who knows. But my girl is so tough, She doesn't even know She's being tough.
So most people don't notice.
Think about it. A week of fever that comes every month. That's a quarter of Her life.
Most people don't notice that 1/4 of the time, She is experiencing something that would have most kids crying and pouting in bed. And practically all adults. Because She is tough, and because Her parents take the stance of, "this is your life so go live with it", She goes about Her business- school, swimming lessons, chores- even though She is fevered and in pain.
To the average observer, Little One might seem like a kid that's due a nap. A little bit droopy, a little bit grumpy. A little bit. Almost no one can tell that She's powering through a really tough week. And we don't bring it up.
Before we knew what was going on, when She got sick we would baby Her a little. Let Her lie on the couch, let Her eat soup. Then the week after the fever was as rough on us as the week during; it took that long to readjust to having to follow the rules and the schedule and not being a Special Case anymore. Well if we keep that up, it's literally half our lives spent off-kilter. It's telling Her over and over that She's a victim and She Can't. No thanks.
So She might be a little grumpy at a playdate, but I'm not going to skip it. Or say, "Sorry. She's running a fever of 103, taking three medicines, and hasn't kept down any food today. It's not really Her fault She's a bit fussy." I don't want Her to hear me say that this thing, normal for Her, is an excuse, or that I think She needs to be apologized for. I'll just let Little One know that if She's too tired to play, we can go home. She decides. Sometimes we do, but we say She's tired and leave it at that.
Unlike food allergies, which anymore are pretty common, fever syndromes are still pretty rare. So I also don't talk about it much because I get blank stares. No, it doesn't really make sense. It's an odd disorder. No, She's not contagious; She's not actually ill. Her body is just attacking itself for awhile. Luckily my girl can take a self-beating and keep on kicking.
Still. Just because we don't make too much fuss about it doesn't mean is isn't hard. For Her, there are a lot of times She is expected to achieve and behave as usual when She just feels like crap.
For Her parents, between fevers we all but forget them. It feels like they are no big deal.
But when one hits, it's misery. It is misery to see my baby having to fight hard to get through a day. An onlooker might not be able to tell how bad She feels, but I can. She might not cry or whine one bit. But when She just can't swallow Her dinner, She falls into my lap ready for bed two hours early, and looks up at me with these big, suffering eyes...it breaks my heart a little.
My super-kiss-it-better-powers fail me here, Peanuts. In the middle of a fever, it is a big deal. We can't remember why we ever thought it wasn't a big deal. We want to sell our internal organs if it will make it go away so She can feel better. And then She wakes up in the morning, fine. And we move on; we forget about it again for a few weeks. It's a roller-coaster for us all.
The high demands of burning like that for a week each month ratchets Her metabolism up so that She needs a special calorie drink and a careful diet to get through the days without running out of energy. But Her teacher can't understand why I keep bothering them about why She hasn't had Her snack at school. She has to have it, I try to explain. Every day. One missed snack a day and She will dive off the growth curve and send all Her specialists into a tizzy fit. I get to be That Crazy Mom.
This summer, after a couple particularly bad rounds of fever, we agreed to try high-dose steroids. It was like a miracle. One dose and She'd wake up the next day as good as new. One day a month is SO much better than a week. SO much.
But the problem, which is common for fever syndrome kids, is that while the drugs shortened the fevers, it also caused them to come closer together. Closer and closer, until we were having to give them to Her every two weeks instead of once a month. Hard to say how much better that is.
So now we are considering third-line treatment, which is surgery. In a little over half of cases, a tonsillectomy has been found to "cure" this fever syndrome. Maybe not forever, but for at least a good long while. Maybe by then She will be old enough that Her body will have stopped this cycle; it usually does happen on its own around puberty.
I know it's a minor, common procedure. But it's still hard to elect to put your child under a knife.
I know I have found comfort scanning the internet for blogs of fever-syndrome moms. It helps to know that though it's a rare problem, She's not the only one going through it, and it helps to see how other parents handle managing it for their kids. So maybe someone will read here and know there's someone who gets what you are going through, who is facing the same kinds of decisions. If so I hope you share your story and advice in the comments.
For those who are just part of the Little One fan club, now you know Her better. In the next week or so we will see the ENT guy and decide whether to try the surgery. I'll let those of you who are curious know how it goes. In the meantime, if you meet Little One She might be fighting or recovering from a fever. But if you ask Her how She is, She'll tell you, "Good!" Which is exactly what She is.
Since I've had a few questions from family lately about how Her fevers are going, let me give Little One more reason to slap me with a HIPAA lawsuit someday. Bring it, Little One!
I don't talk about the fevers as much as the allergies, because unlike food allergies, which other people can have a lot to do with making worse/better, there is nothing anyone can do about Her fevers. Not even me. And I'm the mom. I'm supposed to have super-kiss-it-better-powers!
But they are a big part of our lives, nonetheless.
Little One has a glitch in Her immune system that causes Her to spike high fevers about once a month, for about a week. They come with lovely side attractions like vomiting and lymph nodes the size of ping-pong balls. So much fun!
Let me tell you something about Little One. She is tough. I mean, this kid is tough as nails. How much is inborn, how much is building up a tolerance for discomfort after a small lifetime as a human pincushion, who knows. But my girl is so tough, She doesn't even know She's being tough.
So most people don't notice.
Think about it. A week of fever that comes every month. That's a quarter of Her life.
Most people don't notice that 1/4 of the time, She is experiencing something that would have most kids crying and pouting in bed. And practically all adults. Because She is tough, and because Her parents take the stance of, "this is your life so go live with it", She goes about Her business- school, swimming lessons, chores- even though She is fevered and in pain.
To the average observer, Little One might seem like a kid that's due a nap. A little bit droopy, a little bit grumpy. A little bit. Almost no one can tell that She's powering through a really tough week. And we don't bring it up.
Before we knew what was going on, when She got sick we would baby Her a little. Let Her lie on the couch, let Her eat soup. Then the week after the fever was as rough on us as the week during; it took that long to readjust to having to follow the rules and the schedule and not being a Special Case anymore. Well if we keep that up, it's literally half our lives spent off-kilter. It's telling Her over and over that She's a victim and She Can't. No thanks.
So She might be a little grumpy at a playdate, but I'm not going to skip it. Or say, "Sorry. She's running a fever of 103, taking three medicines, and hasn't kept down any food today. It's not really Her fault She's a bit fussy." I don't want Her to hear me say that this thing, normal for Her, is an excuse, or that I think She needs to be apologized for. I'll just let Little One know that if She's too tired to play, we can go home. She decides. Sometimes we do, but we say She's tired and leave it at that.
Unlike food allergies, which anymore are pretty common, fever syndromes are still pretty rare. So I also don't talk about it much because I get blank stares. No, it doesn't really make sense. It's an odd disorder. No, She's not contagious; She's not actually ill. Her body is just attacking itself for awhile. Luckily my girl can take a self-beating and keep on kicking.
Still. Just because we don't make too much fuss about it doesn't mean is isn't hard. For Her, there are a lot of times She is expected to achieve and behave as usual when She just feels like crap.
For Her parents, between fevers we all but forget them. It feels like they are no big deal.
But when one hits, it's misery. It is misery to see my baby having to fight hard to get through a day. An onlooker might not be able to tell how bad She feels, but I can. She might not cry or whine one bit. But when She just can't swallow Her dinner, She falls into my lap ready for bed two hours early, and looks up at me with these big, suffering eyes...it breaks my heart a little.
My super-kiss-it-better-powers fail me here, Peanuts. In the middle of a fever, it is a big deal. We can't remember why we ever thought it wasn't a big deal. We want to sell our internal organs if it will make it go away so She can feel better. And then She wakes up in the morning, fine. And we move on; we forget about it again for a few weeks. It's a roller-coaster for us all.
The high demands of burning like that for a week each month ratchets Her metabolism up so that She needs a special calorie drink and a careful diet to get through the days without running out of energy. But Her teacher can't understand why I keep bothering them about why She hasn't had Her snack at school. She has to have it, I try to explain. Every day. One missed snack a day and She will dive off the growth curve and send all Her specialists into a tizzy fit. I get to be That Crazy Mom.
This summer, after a couple particularly bad rounds of fever, we agreed to try high-dose steroids. It was like a miracle. One dose and She'd wake up the next day as good as new. One day a month is SO much better than a week. SO much.
But the problem, which is common for fever syndrome kids, is that while the drugs shortened the fevers, it also caused them to come closer together. Closer and closer, until we were having to give them to Her every two weeks instead of once a month. Hard to say how much better that is.
So now we are considering third-line treatment, which is surgery. In a little over half of cases, a tonsillectomy has been found to "cure" this fever syndrome. Maybe not forever, but for at least a good long while. Maybe by then She will be old enough that Her body will have stopped this cycle; it usually does happen on its own around puberty.
I know it's a minor, common procedure. But it's still hard to elect to put your child under a knife.
I know I have found comfort scanning the internet for blogs of fever-syndrome moms. It helps to know that though it's a rare problem, She's not the only one going through it, and it helps to see how other parents handle managing it for their kids. So maybe someone will read here and know there's someone who gets what you are going through, who is facing the same kinds of decisions. If so I hope you share your story and advice in the comments.
For those who are just part of the Little One fan club, now you know Her better. In the next week or so we will see the ENT guy and decide whether to try the surgery. I'll let those of you who are curious know how it goes. In the meantime, if you meet Little One She might be fighting or recovering from a fever. But if you ask Her how She is, She'll tell you, "Good!" Which is exactly what She is.



