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!
Showing posts with label Pulmicort. Show all posts
Showing posts with label Pulmicort. Show all posts
Wednesday, May 4, 2011
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.
Monday, January 31, 2011
Sweetening the Deal
The biopsies are back and lo and behold, Roo's eosinophil counts are worse than ever. How the heck?! I have no idea. Lot's of theories but no answers. This seems to be a trend with this nasty disease. He's up to 60-70 eosinophils per high power field. I think his highest count before that was in the 30's so this is not encouraging. The diagnosis is anything above 15 per hpf.
Our current theories for the spike include everything from a tomato allergy to a brand spanking new soy allergy to the mold-infested humidifier we diligently placed by his bed following the infamous croup episode after his scope in November. Fortunately, none of these are relevant at the moment because they are all giving me a headache. Or maybe that's the mold.
Roo is nearing his big 0-3 birthday and while we'll be sure to mark the occasion with "Under the Hill" balloons and allergy-free treats, he still tips the scale at 23 pounds and at almost 34 inches, he hasn't added height in months. It's time to take his treatment to the next level.
We've opted to medicate him with Budesonide (the generic name for Pulmicort - a hot topic on the EoE scene these days!). Twice a day for 8 weeks he supposed to drink a slurry of asthma medicine mixed with multiple packets of Splenda. Please disregard the "For Inhalation Only" warnings on the box.
As you might imagine, given the oral delay, sensitive gag reflex, food aversion, and pure hatred of anything too sweet the Splenda slurry is not really working out. Raspberry sorbet on the other hand, seems to be doing the trick.
So, we've been mixing his meds with about a teaspoon of sorbet. He is on board with his am/pm ice cream treats and I am stunned that we found a way to get him to take it. The one potential for disaster here, of course, is that I just emailed our GI team to let them know I'm using sorbet, not Splenda. I expect the phone to burst into flames at any moment. Fingers crossed. Taking it has to be better than not taking it, right?
So from here, once again, we wait and see. If it works, the budesonide is a way to mask symptoms not cure the condition but we're hopeful that if we can make him comfortable for any length of time and get some weight on him, we'll be better prepared to address his diet once symptoms return. We're taking the first tiny steps toward embracing the idea of a g-tube should it come to that. And above all, trying our best to focus on the good stuff. Like raspberry sorbet.
Our current theories for the spike include everything from a tomato allergy to a brand spanking new soy allergy to the mold-infested humidifier we diligently placed by his bed following the infamous croup episode after his scope in November. Fortunately, none of these are relevant at the moment because they are all giving me a headache. Or maybe that's the mold.
Roo is nearing his big 0-3 birthday and while we'll be sure to mark the occasion with "Under the Hill" balloons and allergy-free treats, he still tips the scale at 23 pounds and at almost 34 inches, he hasn't added height in months. It's time to take his treatment to the next level.
We've opted to medicate him with Budesonide (the generic name for Pulmicort - a hot topic on the EoE scene these days!). Twice a day for 8 weeks he supposed to drink a slurry of asthma medicine mixed with multiple packets of Splenda. Please disregard the "For Inhalation Only" warnings on the box.
As you might imagine, given the oral delay, sensitive gag reflex, food aversion, and pure hatred of anything too sweet the Splenda slurry is not really working out. Raspberry sorbet on the other hand, seems to be doing the trick.
So, we've been mixing his meds with about a teaspoon of sorbet. He is on board with his am/pm ice cream treats and I am stunned that we found a way to get him to take it. The one potential for disaster here, of course, is that I just emailed our GI team to let them know I'm using sorbet, not Splenda. I expect the phone to burst into flames at any moment. Fingers crossed. Taking it has to be better than not taking it, right?
So from here, once again, we wait and see. If it works, the budesonide is a way to mask symptoms not cure the condition but we're hopeful that if we can make him comfortable for any length of time and get some weight on him, we'll be better prepared to address his diet once symptoms return. We're taking the first tiny steps toward embracing the idea of a g-tube should it come to that. And above all, trying our best to focus on the good stuff. Like raspberry sorbet.
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