Pull out your party hats, it's National Eosinophil Awareness Week! I haven't written much specifically about eosinophilic disorders lately because Roo's been doing so well. His last endoscopy in November 2009 was clean, meaning he had no eosinophils (white blood cells) hanging out in his esophagus wreaking havoc on his digestive tract.
Like so many of these crazy allergic diseases, Eosinophilic Esophagitis was pretty much unheard of until the 1970's. Since that time, there's been a rapid increase in cases and no one knows exactly why. The disease is more common in boys than girls, by the way, and while cases appear all over the world across all nationalities, it seems to have a particular affinity for Caucasians.
We are the lucky ones because we've been able to manage Roo's symptoms through simple diet modification. Many children are not so fortunate and experience chronic chest and stomach pain, failure to thrive, vomiting, dysphagia (that's when food gets stuck in the esophagus and needs to be surgically removed or regurgitated - one of Roo's big symptoms) from staggeringly long lists of foods and environmental allergens that no one else seems to think twice about. Can you imagine? And that's not even taking into account the emotional and social impact these kids suffer. For many the only "safe" nourishment is specialized amino acid formulas delivered through feeding tubes.
So, in an attempt to spread the word and garner support for finding a solution to this crappy condition, please visit the American Partnership for Eosinophilic Disorders. This organization is not flashy but it's incredibly informative, well-organized, accessible, supportive and serves as a fantastic resource for our family and thousands of others dealing with eosinophilic disorders.
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Thursday, May 20, 2010
Thursday, May 13, 2010
Jinx
I came home yesterday to the kids playing "throw up". Each of them had their own infirm stuffed toy and a bowl. They took turns making wretching noises while Baby Iris, Broby, and Elmo hung their weary heads over their bowls and presumably hurled. Then, Looly, Bean, and Roo dutifully carried the imaginary contents to the toilet where they dumped it and rinsed out their bowls in the sink. This kept them enraptured for half an hour at least.
So it only made sense that after all of my rejoicing on the dairy trial results, Roo threw up his real dinner last night. He ate well and even fed himslef about half his plate - turkey meatballs, elbow macaroni pasta (egg-free of course) in butter and ground flaxseeds, and buttered corn (Looly's choice of vegetable last night).
To celebrate I gave the kids chocolate chips for dessert. They've had the same dairy-free chocolate chips lots of times but typically I buy the mini-chips. This time the grocery store was out of mini's so I picked up a bag of regular sized chocolate chips - still dairy-free mind you. Wrong decision. Roo gagged on a chip, spit it out, followed by the entire contents of his stomach.
I'm positive it had nothing to do with dairy and was just another inevitable event in the world of reflux and oral delays but still. The sad truth is when it happens my mind is not really on my poor suffering, vomiting child. Instead I'm silently calculating the caloric value of each heave as it exits his body. Last night, 300 calories at least. Ugh.
Oh yeah. The cat threw up yesterday too. Special thanks to Vivi for cleaning up that one.
So it only made sense that after all of my rejoicing on the dairy trial results, Roo threw up his real dinner last night. He ate well and even fed himslef about half his plate - turkey meatballs, elbow macaroni pasta (egg-free of course) in butter and ground flaxseeds, and buttered corn (Looly's choice of vegetable last night).
To celebrate I gave the kids chocolate chips for dessert. They've had the same dairy-free chocolate chips lots of times but typically I buy the mini-chips. This time the grocery store was out of mini's so I picked up a bag of regular sized chocolate chips - still dairy-free mind you. Wrong decision. Roo gagged on a chip, spit it out, followed by the entire contents of his stomach.
I'm positive it had nothing to do with dairy and was just another inevitable event in the world of reflux and oral delays but still. The sad truth is when it happens my mind is not really on my poor suffering, vomiting child. Instead I'm silently calculating the caloric value of each heave as it exits his body. Last night, 300 calories at least. Ugh.
Oh yeah. The cat threw up yesterday too. Special thanks to Vivi for cleaning up that one.
Wednesday, May 12, 2010
Record Week
After much anxious breath holding and hand wringing, I am officially ready to declare Roo's dairy trial....a SUCCESS!! He's been eating dairy laden foods for a few weeks now and appears to be suffering absolutely no ill effects. Pizza, ice cream, cream cheese on toast, real yogurt, cream sauce, cereal with milk, and anything with "natural flavoring" have been making regular appearances on his plate. I am ecstatic. I'd consider buying a cow to tie up in the backyard but our town probably has an ordinance against that.
Roo's horizons have been broadened exponentially and whether he realizes it or not, he's eating a little more. Granted eating more includes handfuls of goldfish crackers, cheese puffs, and these strange sugar yogurt crisp things - the cumulative nutritional value of which I am sure sums zero, but still, he's chewing food and swallowing it. Victory is sweet.
In fact, I hesitate to write it for it seems every time I do we begin to regress once more, but our baby scale has been creeping up. Roo had three new weight records this week! The ultimate was a reading of 20 pounds, 12.5 ounces last night. Yes he chugged some water, ate a good dinner, and then drank a couple ounces of milk, but you know my theory. We're all about extremes. I don't care how he got there. He got there. A few more ounces and we'll be staring 21 pounds down the barrel.
And no, I still haven't called the doctor to figure out our next steps but I think I'll wallow in the glow of this moment for just a little longer before I do.
Roo's horizons have been broadened exponentially and whether he realizes it or not, he's eating a little more. Granted eating more includes handfuls of goldfish crackers, cheese puffs, and these strange sugar yogurt crisp things - the cumulative nutritional value of which I am sure sums zero, but still, he's chewing food and swallowing it. Victory is sweet.
In fact, I hesitate to write it for it seems every time I do we begin to regress once more, but our baby scale has been creeping up. Roo had three new weight records this week! The ultimate was a reading of 20 pounds, 12.5 ounces last night. Yes he chugged some water, ate a good dinner, and then drank a couple ounces of milk, but you know my theory. We're all about extremes. I don't care how he got there. He got there. A few more ounces and we'll be staring 21 pounds down the barrel.
And no, I still haven't called the doctor to figure out our next steps but I think I'll wallow in the glow of this moment for just a little longer before I do.
Monday, May 3, 2010
Molluscum Contagiosum
Besides the crusty, red eczema that plagues his legs and arms, Roo has this nasty patch of hard little bumps around his ankle. Typically it doesn't seem to bother him but it is unsightly - imagine a patch of twenty or so little warts, mostly flesh toned but every so often with a red oozer or two. We saw the pediatrician a few weeks ago and she took a look. Add another ailment to Roo's cirriculum vitae: Molluscum Contagiosum.
Molluscum are not warts exactly. They are caused by a virus and are apparently, quite common in children. They are harmless, or so I've been told, and the general consensus is to let the Molluscum run its course and the papules should go away on their own. Sometime in the next few years, that is.
In case you missed the implications of the name, Molluscum Contagiosum are well, contagious. If you have them, you're not supposed to share towels or baths to avoid infecting others. Of course, I found that out after we discovered a few papules on Looly's legs, and one on Bean's chest.
We go to a gym class one day a week where the kids go barefoot. Roo was in shorts last week and while no one was brave enough to broach the topic outright, I did catch a horror-stricken mother staring at his ankle. I smiled and she gathered up her well-nourished, satin-skinned toddler and carried him to the uneven parallel bars at the opposite end of the gym. Wonder if they'll be back next week?
Ok, I'm being insensitive but it does beg the question, what am I supposed to do for the next several months (years??) until these things go away? As a 20 pound 2-year-old boy who can't eat birthday cake, he's enough of a pariah as it is. I can't keep him cloistered away forever. On the other hand, I don't blame other parents for getting freaked out for not wanting their kids to contract ugly warts. I don't want to deal with them either. We have been assured that the risk of infection is minimal. But since our other two kids have them too, how minimal can this infection risk be? Aside from lancing them off or burning them (neither of which is recommended for children his age) I'm not sure what our options are. Has anyone else dealt with these? Do I need to keep him covered and in seclusion? How about the community swimming pool? And I was looking forward to summer!
Molluscum are not warts exactly. They are caused by a virus and are apparently, quite common in children. They are harmless, or so I've been told, and the general consensus is to let the Molluscum run its course and the papules should go away on their own. Sometime in the next few years, that is.
In case you missed the implications of the name, Molluscum Contagiosum are well, contagious. If you have them, you're not supposed to share towels or baths to avoid infecting others. Of course, I found that out after we discovered a few papules on Looly's legs, and one on Bean's chest.
We go to a gym class one day a week where the kids go barefoot. Roo was in shorts last week and while no one was brave enough to broach the topic outright, I did catch a horror-stricken mother staring at his ankle. I smiled and she gathered up her well-nourished, satin-skinned toddler and carried him to the uneven parallel bars at the opposite end of the gym. Wonder if they'll be back next week?
Ok, I'm being insensitive but it does beg the question, what am I supposed to do for the next several months (years??) until these things go away? As a 20 pound 2-year-old boy who can't eat birthday cake, he's enough of a pariah as it is. I can't keep him cloistered away forever. On the other hand, I don't blame other parents for getting freaked out for not wanting their kids to contract ugly warts. I don't want to deal with them either. We have been assured that the risk of infection is minimal. But since our other two kids have them too, how minimal can this infection risk be? Aside from lancing them off or burning them (neither of which is recommended for children his age) I'm not sure what our options are. Has anyone else dealt with these? Do I need to keep him covered and in seclusion? How about the community swimming pool? And I was looking forward to summer!