Our speech therapist thinks Roo has made big progress in the past few months and isn't sure she needs to see him anymore. I agree that he often eats well in her office. All the games of Connect 4, sticker charts, balloon timer, and the pretty young speech therapist provide exactly the level of incentive he requires to finish a decent meal. She believes that at this point it's largely a matter of keeping him motivated. He can eat. He just chooses not to most of the time. And she's right.
But I'm torn. He can eat when he sets his mind to it. He crunches up Dum Dum lollipops like nobody's business. He can eat raw carrots, Ruffles potato chips, pork, bacon, grape tomatoes, and all kinds of other foods that require ample chewing. But without fail, he still gags on yogurt. Muffins, most cookies, and soft breads, pancakes and the like are still off limits. And while we know that his esophagus is clear right now, he still threw up after a single bite of ice cream with sprinkes this weekend. My theory is that it was a textural issue...the mixing of tiny crunchy pellets along with soft, cold, mushy ice cream. That kind of stuff still happens a lot.
If we are to believe the scopes, GI's, ENT, and speech therapist, there's not really a physical cause remaining at this point for the frequent vomiting and general food aversion. He still takes Prevacid because I think with or without the EoE he suffers from reflux too. I'm thinking of continuing the speech because I don't really know what else to do with him.
Thursday, May 5, 2011
Wednesday, May 4, 2011
Props for Grampy
Budesonide, or Pulmicort, if you prefer, is an asthma medication. It comes in individual packets or respules dissolved in a couple of milliters of liquid that are meant to be used in a nebulizer specifically for inhalation to treat, well, asthma, of course. For eosinophilic esophagitis, the protocol is a bit different. You have to drink the stuff. To make it more palatable and stick-to-your-esophagus thick, GI specialists the world over have recommended mixing it with a few packets of Splenda to create a sickly sweet sludge-like consistency which is supposed to adhere to the esophagus walls, thus maximizing the effectiveness of the steroid. Anyone out there ever eat a whole packet of Splenda? How about five at a time?
A few months ago when we were first looking at a budesonide trial for Roo, we were dreading it. See, we were the teeniest bit skeptical that we could get this kid, who at age three, has yet to ingest a dose of Children's Tylenol successfully due to a hyper-sensitive gag reflex, to swallow five packets of Splenda mixed with medicine. Not once, but twice a day for eight weeks.
As I was hemming and hawing about how to make this happen, and whining just a bit perhaps about the unfairness of it all over the phone to my parents, my dad, Grampy to Roo, Bean, and Looly, devised his own brilliant solution. Sorbet. Roo can't get enough. It's thick, tangy, sweet but not too sweet, icy enough to dull the flavor, has few ingredients, and let's face it, way more fun to eat than Splenda. After one horrifically unsuccessful attempt with the Splenda, I nervously approached our GI team with Grampy's idea and to my surprise they agreed to let us try it. Roo literally ate it up. For what ended up being more than ten weeks due to scheduling difficulties with the scope.
And get this, as it turns out, our GI team is now passing along Grampy's new recommendation to other families starting on budesonide for EoE. Turns out sorbet is the new Splenda. And Grampy is the Man!
A few months ago when we were first looking at a budesonide trial for Roo, we were dreading it. See, we were the teeniest bit skeptical that we could get this kid, who at age three, has yet to ingest a dose of Children's Tylenol successfully due to a hyper-sensitive gag reflex, to swallow five packets of Splenda mixed with medicine. Not once, but twice a day for eight weeks.
As I was hemming and hawing about how to make this happen, and whining just a bit perhaps about the unfairness of it all over the phone to my parents, my dad, Grampy to Roo, Bean, and Looly, devised his own brilliant solution. Sorbet. Roo can't get enough. It's thick, tangy, sweet but not too sweet, icy enough to dull the flavor, has few ingredients, and let's face it, way more fun to eat than Splenda. After one horrifically unsuccessful attempt with the Splenda, I nervously approached our GI team with Grampy's idea and to my surprise they agreed to let us try it. Roo literally ate it up. For what ended up being more than ten weeks due to scheduling difficulties with the scope.
And get this, as it turns out, our GI team is now passing along Grampy's new recommendation to other families starting on budesonide for EoE. Turns out sorbet is the new Splenda. And Grampy is the Man!
Tuesday, May 3, 2011
Free and clear...for now
The biopsy results are in and Roo is officially a responder! Following a ten week trial of drinking budesonide respules stirred into a tablespoon of lemon sorbet two times a day, his esophageal tissue is healed up and eosinophil-free, at least for the moment. Psyched is an understatement. Apparently, about 70-85 percent of people do respond to the steroid treatment, but can you blame me for not being terribly optimistic? This is the best news we've had for a while.
He's off the budesonide now until symptoms reappear (not that they've exactly disappeared, but more on that another time). Plans for a feeding tube are on hold as he's put on a little weight. In fact, he jumped up slightly on the growth chart. He's still below first percentile for weight, but he's closing in a bit. He hit 25 pounds for the first time this week! After more than eight months of stagnation, he grew almost an inch and his height is back tracking around the 5th percentile. We're starting to retire the size 12-18 month pants. And as if that's not enough, one of his two year molars is finally peeking through the gums. Yes, he's nearly 38 months and just getting his two year molars. Bean's had hers for about a year now.
We're keeping dairy in his diet bringing his list of forbidden foods is down to:
He's off the budesonide now until symptoms reappear (not that they've exactly disappeared, but more on that another time). Plans for a feeding tube are on hold as he's put on a little weight. In fact, he jumped up slightly on the growth chart. He's still below first percentile for weight, but he's closing in a bit. He hit 25 pounds for the first time this week! After more than eight months of stagnation, he grew almost an inch and his height is back tracking around the 5th percentile. We're starting to retire the size 12-18 month pants. And as if that's not enough, one of his two year molars is finally peeking through the gums. Yes, he's nearly 38 months and just getting his two year molars. Bean's had hers for about a year now.
We're keeping dairy in his diet bringing his list of forbidden foods is down to:
- peanuts
- tree nuts
- eggs
- apple
- peach
- beef
Tuesday, April 19, 2011
Cautious Optimism
Surgery on Friday was a raging success. In terms of Roo waking up after anesthesia, coming home without having to be admitted to the hospital, and no Stridor-induced trips to the ER, things couldn't have gone any better.
On the EoE front, the physical appearance of his esophagus was everything it ought to be - clean, bubble gum pink, free of white plaques and furrows, and best of all, remember those pesky little bumps and polyps that had us on edge for three months? They are no more! We're still waiting on the biopsy results which should be back some time this week but the physical evidence was encouraging. Ultimately the biopsies will tell the full story but it's looking like the budesonide (aka Pulmicort) might be working for him. I still don't quite believe it. As we know, shoes tend to drop around here when we least expect it. I'm not popping any corks until the official results are in, but there is a little ginger in my step that hasn't been there in some time.
In addition to his regular upper endoscopy, Roo also underwent a bronchoscopy this time around. In a strange twist of fate I almost forgot all about the scope results because I was sure that the budesonide wasn't working. I was more focused on the bronchoscopy first because he'd never had one and second, because the Otolaryngologist or ear, nose, and throat specialist (yes, we've added yet another specialist to "The Team") warned us that Roo would likely need to be admitted to the hospital if he wasn't breathing well following the procedure. The rationale was that he's already had lots of breathing issues - namely acute Croup and Stridor - following his regular scopes, and that a bronchoscopy would cause even more trauma to his airway thus increasing the croupy response. Fortunately that didn't happen and now we think we now why.
As it turns out, Roo's airway is especially small. He's obviously part Lilliputian to begin with and based on his actual stats of a whopping 24 pounds and 34 inches, the ENT said his airway is about 50% of the size he would expect it to be. How this comes as a surprise I'm not sure. I mean, his entire neck has the girth of a garden hose. Regardless, the breathing tubes used during his previous procedures were much too large and essentially tore up his wind pipe...hence the coughing up of blood and tracheal spasms. But seriously, is Roo the smallest 3-year-old they've ever seen in the Children's hospital? I'm once again left wondering how this went unnoticed by the anesthesia team in a hospital devoted specifically to very sick children.
Well, enough of that because the reality is that no matter how we had to find it out, I'm thrilled that there's a reason for his bad reaction to anesthesia that doesn't involve another allergy or a tumor. Things could be much worse. And now they know what size tube to use.
So, just waiting for the phone to ring. Not chiming any victory bells yet but the mallet's in my hand.
On the EoE front, the physical appearance of his esophagus was everything it ought to be - clean, bubble gum pink, free of white plaques and furrows, and best of all, remember those pesky little bumps and polyps that had us on edge for three months? They are no more! We're still waiting on the biopsy results which should be back some time this week but the physical evidence was encouraging. Ultimately the biopsies will tell the full story but it's looking like the budesonide (aka Pulmicort) might be working for him. I still don't quite believe it. As we know, shoes tend to drop around here when we least expect it. I'm not popping any corks until the official results are in, but there is a little ginger in my step that hasn't been there in some time.
In addition to his regular upper endoscopy, Roo also underwent a bronchoscopy this time around. In a strange twist of fate I almost forgot all about the scope results because I was sure that the budesonide wasn't working. I was more focused on the bronchoscopy first because he'd never had one and second, because the Otolaryngologist or ear, nose, and throat specialist (yes, we've added yet another specialist to "The Team") warned us that Roo would likely need to be admitted to the hospital if he wasn't breathing well following the procedure. The rationale was that he's already had lots of breathing issues - namely acute Croup and Stridor - following his regular scopes, and that a bronchoscopy would cause even more trauma to his airway thus increasing the croupy response. Fortunately that didn't happen and now we think we now why.
As it turns out, Roo's airway is especially small. He's obviously part Lilliputian to begin with and based on his actual stats of a whopping 24 pounds and 34 inches, the ENT said his airway is about 50% of the size he would expect it to be. How this comes as a surprise I'm not sure. I mean, his entire neck has the girth of a garden hose. Regardless, the breathing tubes used during his previous procedures were much too large and essentially tore up his wind pipe...hence the coughing up of blood and tracheal spasms. But seriously, is Roo the smallest 3-year-old they've ever seen in the Children's hospital? I'm once again left wondering how this went unnoticed by the anesthesia team in a hospital devoted specifically to very sick children.
Well, enough of that because the reality is that no matter how we had to find it out, I'm thrilled that there's a reason for his bad reaction to anesthesia that doesn't involve another allergy or a tumor. Things could be much worse. And now they know what size tube to use.
So, just waiting for the phone to ring. Not chiming any victory bells yet but the mallet's in my hand.
Tuesday, April 5, 2011
Praising Francesca and Chipotle
As you might imagine we rarely eat out as a family. Far too many restaurant meals have ended in a table full of vomit to fully enjoy the experience. Lately, however, the urge for some normalcy and let's be honest, a break from the kitchen, has been looming. Gladly, Roo's on an upswing at the moment and seems to be tolerating food unusually well. Time to capitalize on our good fortune, because who knows where we'll be after the next scope.
Saturday night on a whim we headed to one of our favorite and historically most child-friendly and allergy-accommodating restaurants, Francesca's Al Fiore, in Forest Park. Now despite the awesome pizza, this is no pizza joint. With white tablecloths, real napkins, great food, and a fully stocked wine cellar, it was almost like date night, plus three. As usual the staff was exceedingly patient and understanding about our plethora of questions regarding the ingredients and the waitress event went so far as to declare that we have most charming children. They were remarkably well behaved and quiet, almost like we do this all the time. Ranked among our top 3 meals out as a family. Ever. Hands down.
So today while Looly was on a field trip leaving the little ones and me to run errands, I was struck with a sudden surge of bravery. Lunch out. Just the three of us. While I realize that grabbing a quick lunch with the kiddos is commonplace for many families, we are not one of them. On top of the constant threat of anaphylaxis, have I mentioned that Roo vomits in restaurants? Take it from the lady who travels with an empty tupperware container and a dish towel in my purse, just in case.
Bring on Chipotle. Did you know that Chipotle is a completely peanut and tree nut-free establishment? I didn't until all too recently. No egg either. Their allergy information is super accessible and again, the staff was well-informed and incredibly accommodating. No grimaces or sighs as I asked my slew of questions. The lady even asked me if I'd like her to change gloves because I had asked about dairy cross-contamination. Fortunately, with Roo's dairy trial underway, he had plenty to choose from. Chips, guacamole, cheese quesadilla, rice, black beans, and more shredded cheese on top. Technically he could eat the chicken and carnitas too, but they were a little spicy for both kids. Now if that meal can't put some weight on him, I don't know what will. Of course, if we lose soy next week after the scope, we're totally screwed. But today is a good day.
This oughta sum it up...
Saturday night on a whim we headed to one of our favorite and historically most child-friendly and allergy-accommodating restaurants, Francesca's Al Fiore, in Forest Park. Now despite the awesome pizza, this is no pizza joint. With white tablecloths, real napkins, great food, and a fully stocked wine cellar, it was almost like date night, plus three. As usual the staff was exceedingly patient and understanding about our plethora of questions regarding the ingredients and the waitress event went so far as to declare that we have most charming children. They were remarkably well behaved and quiet, almost like we do this all the time. Ranked among our top 3 meals out as a family. Ever. Hands down.
So today while Looly was on a field trip leaving the little ones and me to run errands, I was struck with a sudden surge of bravery. Lunch out. Just the three of us. While I realize that grabbing a quick lunch with the kiddos is commonplace for many families, we are not one of them. On top of the constant threat of anaphylaxis, have I mentioned that Roo vomits in restaurants? Take it from the lady who travels with an empty tupperware container and a dish towel in my purse, just in case.
Bring on Chipotle. Did you know that Chipotle is a completely peanut and tree nut-free establishment? I didn't until all too recently. No egg either. Their allergy information is super accessible and again, the staff was well-informed and incredibly accommodating. No grimaces or sighs as I asked my slew of questions. The lady even asked me if I'd like her to change gloves because I had asked about dairy cross-contamination. Fortunately, with Roo's dairy trial underway, he had plenty to choose from. Chips, guacamole, cheese quesadilla, rice, black beans, and more shredded cheese on top. Technically he could eat the chicken and carnitas too, but they were a little spicy for both kids. Now if that meal can't put some weight on him, I don't know what will. Of course, if we lose soy next week after the scope, we're totally screwed. But today is a good day.
This oughta sum it up...
Thursday, March 31, 2011
Warming Up
After more than a week without heat, we've finally ditched the layers and freed ourselves from a fixed family huddle around the gas fireplace. For several days we rarely left the confines of the five by eight foot rug directly in front of our sole heat source. We played board games, held concerts, read books, had "picnics" and did periodic jumping jacks to keep warm, while outside temperatures hovered in the low 30's. It actually wasn't all bad, especially for Looly Ingalls Wilder. She enjoyed the snuggle time and imagining just how cold that Long Winter really must have been for Laura, Mary, Carrie, and the gang. In any event, the boiler is rolling again and the kids are down to one pair of pajamas at night.
Oddly, the deep freeze seems to have agreed with Roo. He's been vomit-free for over a week and has eaten surprisingly well. Well, maybe not well in the traditional sense of the word, but not bad for him...few bites of breakfast, fine lunch, adequate dinner and a little milk for consecutive days. A good day is always good but I sort of hate when this happens because it starts to get my hopes up that he could maybe, possibly, perhaps, just the tiniest bit be improving. But, we've had these happy spells before so I'm not holding my breath for any miracles. But I am trying to enjoy the good days while they're here. With the next scope fast approaching, they won't last long. April 15. Mark your calendars.
Oddly, the deep freeze seems to have agreed with Roo. He's been vomit-free for over a week and has eaten surprisingly well. Well, maybe not well in the traditional sense of the word, but not bad for him...few bites of breakfast, fine lunch, adequate dinner and a little milk for consecutive days. A good day is always good but I sort of hate when this happens because it starts to get my hopes up that he could maybe, possibly, perhaps, just the tiniest bit be improving. But, we've had these happy spells before so I'm not holding my breath for any miracles. But I am trying to enjoy the good days while they're here. With the next scope fast approaching, they won't last long. April 15. Mark your calendars.
Friday, March 18, 2011
Happy Birthday
So, I admit it. I've been avoiding the blog. It's not that I haven't had anything to say. In fact it's rather the opposite. Anyway, I'm so exhausted my left eyelid is twitching as I look at the screen but I'm sucking it up, along with a Starbucks iced coffee, in honor of my 2 brand-spankingly new 3-year-olds.
Yes, Roo and Bean are 3! Presents at the breakfast table were a big hit. Thanks to Nana and Grampy for St. Patrick's Day head gear and embroidered t-shirts but it was downhill from there. Only a couple of kids showed up to preschool to celebrate with Bean and Roo and share in their hand-dipped chocolate-sprinkle coated pretzels. Now I think I know why.
Poor Bean developed a killer earache immediately after lunch. Then the fever showed up. Tylenol did little to ease her pain and the poor kid had absolutely no interest in her presents. It was so sad. Roo posted a lackluster performance at feeding therapy highlighted by gagging on a piece of salami without actually following through with a full-on vomit. It's the little things.
Already sleep-deprived and hungry since he didn't eat his lunch, Roo opted out of nap which resulted in general 3-year-old debauchery and me screaming at him on his birthday and putting him into a lengthy purposeless time-out. Stellar parenting, I know. I did apologize later and draw him a chalk birthday cake but the damage was done. Think he's the only one who's sleep deprived?
We capped off the evening with take-out pizza, avoided all happy birthday phone calls, and skipped dessert. No singing of happy birthday or anything. We are truly ba humbug parents but it just wasn't in the cards this year. Mufasa and I spent the vast majority of the night trying to comfort Bean. Turns out she had something to cry about. The pediatrician confirmed a double ear infection this morning and her temperature was up to 103.5. That was with tylenol. Poor birthday girl.
Just when we thought we were through the woods and the sky was showing signs of life, Looly awoke this morning with a bloody nose. Now her cheeks are turning pink like Bean's, a sure sign she's next in line for the fever. She's been complaining about headaches a lot lately and I don't know what to think.
Phew. With that off my chest, let's talk about fun stuff. Bean and Roo received so many sweet well-wishes from friends, family, and classmates yesterday. My favorite was listening to the two of them congratulating each other on another year. They really are best friends. Ear infections pass but the loving support system they have in place is remarkable. They got some really cool gifts including an awesome Cozy Coupe car that Mufasa grumbled and slaved over, I mean happily assembled, for Bean, a slick royal blue real guitar for Roo, Magna-tiles (my personal favorite!), hand-painted bowls with their names on them, whiffle balls and bats, umbrellas, various adorable new duds, books, etc. Roo was thrilled with his gifts and Bean will be too once she's feeling better.
Last but not least, Roo's scope is finally scheduled for April 15 - hallelujah! More on that another time. And did I mention is was 65 degrees and sunny yesterday? The big birthday party with their classmates is slated for this Sunday. Let's hope the amoxicillin works it's magic fast.
Yes, Roo and Bean are 3! Presents at the breakfast table were a big hit. Thanks to Nana and Grampy for St. Patrick's Day head gear and embroidered t-shirts but it was downhill from there. Only a couple of kids showed up to preschool to celebrate with Bean and Roo and share in their hand-dipped chocolate-sprinkle coated pretzels. Now I think I know why.
Poor Bean developed a killer earache immediately after lunch. Then the fever showed up. Tylenol did little to ease her pain and the poor kid had absolutely no interest in her presents. It was so sad. Roo posted a lackluster performance at feeding therapy highlighted by gagging on a piece of salami without actually following through with a full-on vomit. It's the little things.
Already sleep-deprived and hungry since he didn't eat his lunch, Roo opted out of nap which resulted in general 3-year-old debauchery and me screaming at him on his birthday and putting him into a lengthy purposeless time-out. Stellar parenting, I know. I did apologize later and draw him a chalk birthday cake but the damage was done. Think he's the only one who's sleep deprived?
We capped off the evening with take-out pizza, avoided all happy birthday phone calls, and skipped dessert. No singing of happy birthday or anything. We are truly ba humbug parents but it just wasn't in the cards this year. Mufasa and I spent the vast majority of the night trying to comfort Bean. Turns out she had something to cry about. The pediatrician confirmed a double ear infection this morning and her temperature was up to 103.5. That was with tylenol. Poor birthday girl.
Just when we thought we were through the woods and the sky was showing signs of life, Looly awoke this morning with a bloody nose. Now her cheeks are turning pink like Bean's, a sure sign she's next in line for the fever. She's been complaining about headaches a lot lately and I don't know what to think.
Phew. With that off my chest, let's talk about fun stuff. Bean and Roo received so many sweet well-wishes from friends, family, and classmates yesterday. My favorite was listening to the two of them congratulating each other on another year. They really are best friends. Ear infections pass but the loving support system they have in place is remarkable. They got some really cool gifts including an awesome Cozy Coupe car that Mufasa grumbled and slaved over, I mean happily assembled, for Bean, a slick royal blue real guitar for Roo, Magna-tiles (my personal favorite!), hand-painted bowls with their names on them, whiffle balls and bats, umbrellas, various adorable new duds, books, etc. Roo was thrilled with his gifts and Bean will be too once she's feeling better.
Last but not least, Roo's scope is finally scheduled for April 15 - hallelujah! More on that another time. And did I mention is was 65 degrees and sunny yesterday? The big birthday party with their classmates is slated for this Sunday. Let's hope the amoxicillin works it's magic fast.
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