LIFE IS A SPECTRUM

As it turns out, Billy has the Hand-Foot-Mouth virus. Sound familiar? Then you, gentle reader, must have been here LAST YEAR when we had the EXACT SAME THING. Yes, the only thing that has changed from the post I wrote about this plague, since I wrote it last summer, is that Willow can now say the word "cuddle."

So without further ado, I give you a rerun of last year ...

Hand-Foot-Mouth, Baron Munchausen and the Robot Who Saved the Day

06/22/2010 08:34 pm

germsarenotforsharing_medium

We're still sick. And I say "we," because when one of us is sick, we all suffer. Our family is a strategically balanced machine, and when one cog isn't functioning, the whole works grinds to a halt.

I was reticent to share our latest round of illness for fear that people would start thinking I had that Baron Munchausen disease or whatever its called. You know, that psycho disease that you see on episodes of Medium or Law and Order or all those Lifetime movies where the moms keep making their kids sick so that they can take them to the hospital for ... some reason. Maybe they like old magazines or mechanical beds.

Then I realized that anyone who'd laid eyes on me recently would be well aware that I wasn't enjoying myself in the slightest and considering I haven't washed my hair or slept in a week, I'm clearly avoiding drawing attention to myself.

So yep, we're still sick. The third virus.

This one is apparently called “Hand-Foot-Mouth Disease.” I seriously thought that was something that happened to cattle. So after a month of battling respiratory flu and stomach flu, my kids have now apparently got a livestock plague.

But no: It turns out there's no relation to “Hoof and Mouth Disease,” the one cows get. So I guess they could still catch that one.

Hand-Foot-Mouth is a highly contagious (but not dangerous) virus that shows up first, usually, as an unexplained fever. Then it's followed by a rash on the – you guessed it – hands, feet and in the mouth. The whole life of the virus can last two or three weeks apparently. It occurs most commonly in children and also is spread most often in the summer months. Most adults have antibodies to fight it off.

The doctor says that it requires physical human-to-human contact, so most of our friends are in luck. Billy isn't big on going around touching people, so it's unlikely that he's rubbed the cow rash on your children.
I'd never heard of Hand-Foot-Mouth before now (though it's apparently pretty common), so I wanted to get the word out about what to look for: strange, unexplained fever, rash appearing on the feet, hands or mouth and a lack of desire for food.

As soon as we're past this round of illness, I'm going to see a local nutritionist to see if there's anything we can do to boost Billy's immunity. Maybe I'm just paranoid and he's ill no more often than other kids who start school, but it seems as though we've spent the past year doing little more than wiping noses and butts and finding new ways to hide Children's Tylenol in beverages.

We've gone through so much kids' flu meds in the past year that we're thinking of hosting tastings. We can tell you all about the best pairings: Generic ibuprofen and V-8 Fusion, for instance, has a very nice finish. But you don't wanna chase a shot of acetaminophen with rice milk. Recipe for disaster. Children's amoxycillin, however, dissolves nicely in milk.

Anyone have any ideas about boosting immunity? Both kids get a daily multi-vitamin. Our house is not over-run with vermin, and it stays reasonably disinfected, thanks to our long-suffering cleaner.

I've heard something about probiotics helping with immunity, but I have no idea what that is. In fact, when I first heard the term, I thought they were talking about robots.

I could use a robot. Particularly one who could be trained to mix up a V-8/ibuprofen cocktail at 4 a.m. so that I could stay asleep. It would be awesome if it were one of those Tranformers that could also turn into a Hummer and drive us around town and fight crime and stuff.

Sigh. But a robot probably wouldn't be very good at “cuckles” (Willow's word for “cuddles”), and I doubt the Probot5000 would know what to make of Billy's midnight recitation of “It's the Great Pumpkin, Charlie Brown.”

So until the technology improves, they're stuck with me and Dave.

Reader Comments

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I'll be thinking of you

I hope he feels better really really really soon. I'll be thinking of you guys!!

I hope Billy is feeling better by now, Amanda!

Hugs,
Wendy

Oh No

Oh no !!
poor baby
I seriously think once they start getting sick and the immunity is down - they just keep getting sick :-(
That being said I really think both Omega 3 ( coromega is a delicious brand ) and probiotics are a great idea

Oh, man!

Ugh, hope he feels better really really really soon. I'll be thinking of you guys!!

Snippets 'N Stuff

I do think I've heard of this virus before but had forgotten about it. I'm sorry. I sucks when kids are sick, but the good news...the older they get, the less they'll be sick. (I speak from experience as a mother of 4 adult kids.) Their little immune systems will become stronger with time.

Oh, my. I gotta admit, when you mention the mouth ulcer to me yesterday, I thought that was a possibility. This is terrible! I guess this means no more camp??

Total 6 comments

scary_road

It can be a scary road.

I like to write about Billy's breakthroughs. I love to share our joy when he seems to meet one more challenge that his autism presents … and to try to illustrate how, when he does make progress, he still does that in an autistic way – and that's a beautiful thing. We've undoubtedly been blessed with some beautiful breakthroughs this year.

But it's not all beautiful. And it's certainly not all breakthroughs. Far from it.

It's really hard for me to write about the rough stuff. I struggle with the ethics of sharing his hardest moments. I debate whether talking about Billy's autistic challenges might give people outside our “special needs circle” the wrong impression of autism. After all, there's enough histrionic screeching about “autism epidemics” and such in the press.

But I'm not the press. And I do not speak for the entire community of parents of autistic kids. I speak for my child – when he's not able to do that for himself.

Which brings me to this week. We came back from our glorious vacation, experienced several communication breakthroughs – a couple of which I blogged about here.

And then Billy got sick.

Just a plain old summer cold with fever and sore throat. But for an autistic child who is still making the connection between cause and effect in terms of his own body, this is a very frightening things. In the middle of the night, when he could sleep, he would wake up screaming, “What is HAPPENING to me?”

At least he can ask that now. But I'll be honest: That's one of the few functional things he's been able to say in the past few days. Mostly, we've heard non-stop scripting, crying and, inexplicably, the occasional fire engine sound. (FYI, it's eerie how realistically he can emulate that sound. And that's not something you want to wake to, coming through your baby monitor at 2 a.m.)

It's depressing on a well-rested day to see even temporary regression. But go a couple of nights with no sleep, struggling to calm your terrified, sick child, and it's the recipe for a pretty black mood.

However, last night was better. We discovered that he had an ulcer on his tongue (probably caused by the fever) and once we treated that, he slept a lot better. So did I.

Now I can look at things a lot more practically. This is temporary. The weird, wacky, wonderful road of progress along the spectrum is definitely not a straight route. It takes strange turns. It can trip you up. Sometimes it may be hard to tell if you're getting anywhere.

But as the late, great Buddy Hackett once told me (remind me to tell you THAT odd story one day), “When you get to my age, sweetheart, you realize that the journey is the destination.”

So let's keep moving, OK? If you let me lean on you this week, I promise to stop and pick you up when you need a lift.

Reader Comments

Sorry to Hear that Billy Is Sick

I hope he feels better soon!

I wish the journey was always going forward, but it doesn't always! With my daughter, she sometimes goes into reverse even when she isn't sick! It's very discouraging!

Mama Said, Mama Said

My mom always sings, "Mama said there'd be days like this. There'd be days like this, mama said." I don't know if she had these kinda days in mind and sometimes I wanna smack something when she sings it, but nevertheless here we are. Sorry you guys have had a rough week. There's not many words of wisdom I can offer that you haven't already heard. Sending happy thoughts, prayers, and virtual hugs your way! Oh, and I can't wait to hear the Buddy Hackett story! =)

Snippets 'N Stuff

I have never heard of an ulcer on the tongue. Ouch!
I hope Billy feels better soon and YOU get some sleep.

Total 3 comments

jeopardy

I feel soooooooooo old. Yes, I'm turning 40 on Saturday, but it feels like 400. I can't remember what it feels like to sleep 60 straight minutes in a row, because the kids, and then both of us, have been sick for a week and a half now. Willow finally went back to school on Friday, and then this morning, Billy got a better-late-than-never start on his school day.

As usual, he found being sick scary, particularly in the middle of the night. Every time he woke up coughing, he would start screaming and run to our room. “I'm so sick!” he would tell us, and then ask, “Can I feel better?”

In fact, despite his fear and illness, he did an awful lot of very good communicating this week. He woke up Wednesday morning by projecting vomiting all over his bed and then repeating the act on me. “Can I have a towel?” he asked each time.

About the third day of his sickness, Dave pointed out, “You know, I haven't heard any echolalia in the last few days.” Echolalia is the repeating of scripts from TV shows and books or even conversations. Usually, Billy still does a lot of that.

When I went in to ask him if he was ready to get up in the morning, instead of giving me a few angry lines from what he calls Math Frogs Go to the Moon he actually asked me, “Can I wait a little while? Can I rest?” I was as shocked as I would have been if he'd suddenly asked me what mortgage rates were down to these days.

Within a few days, though, it was clear that he was saying almost everything in the form of a question. This from a kid who up until a few months ago, never asked questions. Now it was one question after another:

“Mama, can you leave Willow alone?” (His way of asking me to tell Willow to leave HIM alone.)

“Where is our Maglev?” (His way of showing me a video of the French bullet train on the iPad.)

“Mama, can the earth and moon resemble a double planet system?” (His way of telling me, for the 400th time, that the Earth and moon resemble a double planet system. Thank you, Moon in Your Room CD!)

He would kill at Jeopardy where you have to answer in the form of a question – if the categories were the following: “Willow leaving me alone,” “YouTube videos of Maglevs,” “The phases of the moon,” and “Willow not touching my iPad.”

By the way, I have never understood the point of Jeopardy's little twist of answering in the form of a question. It's just stupid. I love Jeopardy, but counting it against someone if they don't answer in the form of a question is like having a game of super-nerd Mother May I:

"It's true that Yuzuru Hiraga was the Japanese naval architect noted for work on innovative warships such as the cruiser Yubari and Yamato for the Imperial Japanese Navy, but you didn't say, 'WHO is Yuzuru Hiraga.' You lose."

During his bedridden time the past week, he has also been obsessively watching his new Watch Me Learn DVDs, which model social behavior by depicting kids in a variety of settings playing games, eating together, sharing craft supplies, etc.

When he started feeling better he actually walked over to me at my desk and asked, "Mama, what are you doing?"

ME: I'm playing a stupid computer game. (In my defense, I was sick too.)

BILLY: Mama, can I play a stupid computer game too?

ME: Sure!

So I pulled him up in my lap and showed him how to play Word Whomp, which he was so unimpressed with that he then informed me ...

BILLY: OK, now it's time to clean up!

This morning, Billy finally got so bored with all my fussing over him and dosing him with medicines and checking his temperature, that at about 5 a.m., he posed his Final Jeopardy question to me: “Mama, can you go away?”

He was in my bed at the time. And yep, I left it to him.

When Billy sleeps, we all win.

Reader Comments

Great communicating

I find that Moe does a really good job communicating when he's sick too. Through the tears and whining, he'll sign perfectly, or spontaneously request something. It's like he's too weak to fight it :)

So proud of Billy! I love the moments when we see progress, and can get some sleep.

I just discovered you. So glad I did. I'll be back, probably (since this is the way I function) starting at the beginning and reading everything. So if you get random comments on your blog in chronological order over the next few days, that would be me.

Happy 40!!

Happy birthday, baby!!!!

So interesting that his speech seemed to get better and his echolalia lessened while he was sick. Hope he's feeling better!

That's so funny! My daughter was sick over the last few days. She behaves so much more typically when she's sick! She's much more flexible and less prone to crying or tantrums! It never makes any sense whatsoever!

Snippets 'N Stuff

You are a crack up. "Super nerd Mother May I"? I LOVE, LOVE, LOVE it!

Tears and Cheers!

Got tears reading this post. Sorry you all are sick, but WOW on the communication factor. Get chills just thinking about it!

I play that stupid computer game, too

Why is it so flippin' addictive with those stupid mocking little...um...what are those? Beavers? Groundhogs? Whatever.

I love the Jeopardy phrasing. That is cute. (Even though it is a dumb rule and it especially ticks me off when my hubby claims victory just because I didn't ask the darn question. Um, I mean, so I've heard from where we do our fabulous and exciting activities that do not include nerdy trivia games. Mmhmm.)

So glad to hear you guys are on the mend! Hope you have a fantastic 40th birthday!! May there be no snot, vomit, or poop! =)

Total 9 comments

We're still sick. And I say "we," because when one of us is sick, we all suffer. Our family is a strategically balanced machine, and when one cog isn't functioning, the whole works grinds to a halt.

germsarenotforsharing

I used to hate it when books like this turned up at story time.

I was reticent to share our latest round of illness for fear that people would start thinking I had that Baron Munchausen disease or whatever its called. You know, that psycho disease that you see on episodes of Medium or Law and Order or all those Lifetime movies where the moms keep making their kids sick so that they can take them to the hospital for ... some reason. Maybe they like old magazines or mechanical beds.

Then I realized that anyone who'd laid eyes on me recently would be well aware that I wasn't enjoying myself in the slightest and considering I haven't washed my hair or slept in a week, I'm clearly avoiding drawing attention to myself.

So yep, we're still sick. The third virus.

This one is apparently called “Hand-Foot-Mouth Disease.” I seriously thought that was something that happened to cattle. So after a month of battling respiratory flu and stomach flu, my kids have now apparently got a livestock plague.

But no: It turns out there's no relation to “Hoof and Mouth Disease,” the one cows get. So I guess they could still catch that one.

Hand-Foot-Mouth is a highly contagious (but not dangerous) virus that shows up first, usually, as an unexplained fever. Then it's followed by a rash on the – you guessed it – hands, feet and in the mouth. The whole life of the virus can last two or three weeks apparently. It occurs most commonly in children and also is spread most often in the summer months. Most adults have antibodies to fight it off.

The doctor says that it requires physical human-to-human contact, so most of our friends are in luck. Billy isn't big on going around touching people, so it's unlikely that he's rubbed the cow rash on your children.
I'd never heard of Hand-Foot-Mouth before now (though it's apparently pretty common), so I wanted to get the word out about what to look for: strange, unexplained fever, rash appearing on the feet, hands or mouth and a lack of desire for food.

As soon as we're past this round of illness, I'm going to see a local nutritionist to see if there's anything we can do to boost Billy's immunity. Maybe I'm just paranoid and he's ill no more often than other kids who start school, but it seems as though we've spent the past year doing little more than wiping noses and butts and finding new ways to hide Children's Tylenol in beverages.

We've gone through so much kids' flu meds in the past year that we're thinking of hosting tastings. We can tell you all about the best pairings: Generic ibuprofen and V-8 Fusion, for instance, has a very nice finish. But you don't wanna chase a shot of acetaminophen with rice milk. Recipe for disaster. Children's amoxycillin, however, dissolves nicely in milk.

Anyone have any ideas about boosting immunity? Both kids get a daily multi-vitamin. Our house is not over-run with vermin, and it stays reasonably disinfected, thanks to our long-suffering cleaner.

I've heard something about probiotics helping with immunity, but I have no idea what that is. In fact, when I first heard the term, I thought they were talking about robots.

I could use a robot. Particularly one who could be trained to mix up a V-8/ibuprofen cocktail at 4 a.m. so that I could stay asleep. It would be awesome if it were one of those Tranformers that could also turn into a Hummer and drive us around town and fight crime and stuff.

Sigh. But a robot probably wouldn't be very good at “cuckles” (Willow's word for “cuddles”), and I doubt the Probot5000 would know what to make of Billy's midnight recitation of “It's the Great Pumpkin, Charlie Brown.”

So until the technology improves, they're stuck with me and Dave.

Reader Comments

I'm starting to think our family is being targeted by some insidious form of biological warfare. Their weapon of choice: stomach flu. Brilliant when you think about it: no one suspects foul play and you slowly sap your targets of their will to dress themselves.

I'm not sure what the goal is of this particular terrorist cell, considering we have most of our assets tied up in our extensive collection of Thomas the Train engines. And we don't have time for any political activism. Heck, we don't even have time for physical activism.

But we're sick again. And when Billy is sick, it's like living with a dozen sick children. Everything is so much worse, so much more terrifying for him. For a child sensitive to the slightest changes in his sensory input -- vestibular (balance/gravity) and olfactory (smells) being some of our particular bugbears -- having a stuffed up head and upset stomach is his idea of living hell.

Actually, I should say that it's one step removed from his living hell: True Hades would be sickness and a visit to the doctor. He has an absolute terror of the pediatrician's office, or any office that looks like it might be harboring a pediatrician somewhere. He had a complete meltdown the first time we visited daycare, because they had a window at the front much like the doctor's office.

We don't go to the doctor unless absolutely necessary. He does get vaccinated -- we have that to look forward to again on his fourth birthday. And he's had stitches and antibiotics at various times in his life. But finding a doctor with the patience and bedside manner to deal with what some people see as histrionics is rare. Our hometown doctor, Dr. Greg Sloan, was always amazingly patient with Billy, even though pediatrics and certainly autism were not his specialties.

We've adopted a certain routine when it comes to the doctor, which doesn't eliminate the problem, but does seem to minimize it to a degree:

1. We make sure the doctor's office is well informed about Billy's autism and how autism manifests itself in Billy. Every autistic child is different, so they should know ahead of time that he's strong, likely to be very scared, and may scream. We also warn them not to touch his head unless absolutely necessary.

2. We start talking to Billy about visiting the "Nice doctor" early in the day. We get out his toy medical kit, give his bear "Tah-Tah" a quick check-up, read a few books about visiting the doctor, and let him give us a checkup, checking our heart with the stethoscope, checking our temperature, etc. Then we let him take his doctor kit to the pediatrician.

3. Whenever possible, get the last available appointment of the day. If he does get upset, then we don't have to worry about upsetting quite so many children in the lobby. Also, it means that it we have to wait, the lobby isn't crowded with other new people, which can upset him when he's sick.

4. Weather permitting, one of us strolls him around outside, while the other waits indoors to hear his name called.

5. We insist on the thermometer that can be gently run across his forehead. He still doesn't like it, but it beats the pants off the one they have to stick in his ear.

6. If the doctor is wearing a white coat, ask them to please remove it before coming in the room. And we give them the warning about touching his head again.

7. Whenever possible, we touch Billy for the doctor, such as holding the stethoscope against his chest, using the thermometer, etc. We obviously can't vaccinate him, but the less he gets touched by a stranger, the better.

8. Hold on tight and keep telling him we love him.

With any luck, we won't have to go to the doctor with this round of flu. But I've been reading "The Berenstain Bears Visit the Doctor" just to be on the safe side.

Reader Comments

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