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 Budesonide. Show all posts
Showing posts with label Budesonide. 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.
Thursday, February 17, 2011
Our Lady of Perpetual Vomit
I have a wild fantasy that one day I will sit down to a family meal without fear that my child will start puking at any minute. I won't cringe every time he jumps off the couch or rough houses with his sisters because there's a chance he'll get hurt, cry, and puke. Maybe there will come a day when I'll prepare spaghetti sauce without the slightest apprehension that a tiny slip of onion might have migrated into the sauce only to end up in the final bite of Roo's plate thus obliterating what was just a moment ago, a nutrient-dense, high-calorie meal. The baby scale will become a relic of the past. As will the baby bottles, 1 AM feedings, 4 AM feedings, constant meal-time television, songs, and other distractions we employ to sneak in a few more bites before he can realize what's happening.
Needles to say, it's a far off land I'm dreaming of. We're almost 3 weeks into the Budesonide and there's no change, at least on the vomit front. If anything, he's vomiting more that he was a month ago. Gagging triggers it. Unfamiliar textures and flavors trigger it. Being full triggers it. TMI, perhaps, but straining with bowel movements can trigger it. Today a yogurt-induced stomachache triggered it. Sometimes nothing at all triggers it and he goes on playing like it never even happened. But most of all, crying triggers it - and when you have a 2-year-old (on steroids, I might add) that you're afraid to let cry, it leads to some interesting behavioral scenarios.
We still don't know for sure if the Budesonide is having an effect but the signs are less than encouraging. On one hand, he seems a tad happier especially upon waking from naps and first thing in the morning. He used to be inconsolable at those times and now, he's generally chipper. Beyond that, however, no increased appetite. No improvement in the oral delay. No decrease in vomiting. No weight gain.
Needles to say, it's a far off land I'm dreaming of. We're almost 3 weeks into the Budesonide and there's no change, at least on the vomit front. If anything, he's vomiting more that he was a month ago. Gagging triggers it. Unfamiliar textures and flavors trigger it. Being full triggers it. TMI, perhaps, but straining with bowel movements can trigger it. Today a yogurt-induced stomachache triggered it. Sometimes nothing at all triggers it and he goes on playing like it never even happened. But most of all, crying triggers it - and when you have a 2-year-old (on steroids, I might add) that you're afraid to let cry, it leads to some interesting behavioral scenarios.
We still don't know for sure if the Budesonide is having an effect but the signs are less than encouraging. On one hand, he seems a tad happier especially upon waking from naps and first thing in the morning. He used to be inconsolable at those times and now, he's generally chipper. Beyond that, however, no increased appetite. No improvement in the oral delay. No decrease in vomiting. No weight gain.
Thursday, February 10, 2011
Growth Charts and Milkshakes
We had our big appointment yesterday with our GI team including our CNP, GI doctor, nutritionist, and various researchers and residents. Overall, the meeting went better than expected. Aside from parking garage chaos and Roo's buffoonery which included repeated diving off the examination table, pilfering and eating 3 Dum Dum lollipops from my purse - mostly in front of the nutritionist, and running head first into a porcelain sink that happened to be at his eye level, things went OK.
We're now about 10 days into our Budesonide trial. I still can't tell if it's working to clear the EoE, but we're cautiously optimistic. The team gave us an approximate 80 percent chance that the meds will work to clear him up, however temporarily, and said it could take a few weeks before we start seeing results. I would be a lot more comfortable with 99.9 percent odds in our favor, but I suppose it could be a lot worse than 80.
Exciting for us, though not as much for our CNP, was that Roo tipped the scales at 11.1 kg. That's 24.4 pounds! Yes, he was fully clothed, but his shoes were off, so how much can a pair of sweatpants and a long-sleeved t-shirt really weigh? The CNP was discouraged because he was "down a little bit" (maybe a few ounces - but they weighted him WITH his shoes!) from his last weigh-in at the January scope. But, as Mufasa and I studied his growth chart in detail, we were happy to point out to her that he is up almost 2 pounds since early November. In fact, that gap between him and the bottom of the growth chart has closed up quite a bit. He's still not exactly on the chart, but he's more of a finger width away now, rather than an entire finger length as was once the case.
We talked about what if the meds don't work, what if they do, NG-tubes (nasogastric - the kind through the nose) versus gastronomy tubes (g-tube - the kinds directly into the stomach). We talked about his behavior issues and steroids are likely to blame, at least to some extent. And we have decided to reintroduce dairy to his diet.
According to GI, if the Budesonide is working, he should be able to eat any of the foods that are causing his EoE. We've opted not to go so far as to put beef, peaches, or apples back into his rotation since he has had at least once positive allergy test to those foods. Eggs and all nuts are still strictly off limits because they are IgE mediated allergies for him (he reacts immediately). Dairy, however, has always been questionable. The prospect of opening up his diet to include dairy is a beautiful beautiful thing. The fat, the calories, the variety, the possibilities!! On the other hand, we might be doing more psychological damage here as we allow the kid to indulge in macaroni and cheese, pizza, milkshakes, and full fat cheddar cheese only to take them all away again in a couple of months if the Budesonide course is unsuccessful. So, where there's an up, there's always a down. Seven weeks to the next scope.
We're now about 10 days into our Budesonide trial. I still can't tell if it's working to clear the EoE, but we're cautiously optimistic. The team gave us an approximate 80 percent chance that the meds will work to clear him up, however temporarily, and said it could take a few weeks before we start seeing results. I would be a lot more comfortable with 99.9 percent odds in our favor, but I suppose it could be a lot worse than 80.
Exciting for us, though not as much for our CNP, was that Roo tipped the scales at 11.1 kg. That's 24.4 pounds! Yes, he was fully clothed, but his shoes were off, so how much can a pair of sweatpants and a long-sleeved t-shirt really weigh? The CNP was discouraged because he was "down a little bit" (maybe a few ounces - but they weighted him WITH his shoes!) from his last weigh-in at the January scope. But, as Mufasa and I studied his growth chart in detail, we were happy to point out to her that he is up almost 2 pounds since early November. In fact, that gap between him and the bottom of the growth chart has closed up quite a bit. He's still not exactly on the chart, but he's more of a finger width away now, rather than an entire finger length as was once the case.
We talked about what if the meds don't work, what if they do, NG-tubes (nasogastric - the kind through the nose) versus gastronomy tubes (g-tube - the kinds directly into the stomach). We talked about his behavior issues and steroids are likely to blame, at least to some extent. And we have decided to reintroduce dairy to his diet.
According to GI, if the Budesonide is working, he should be able to eat any of the foods that are causing his EoE. We've opted not to go so far as to put beef, peaches, or apples back into his rotation since he has had at least once positive allergy test to those foods. Eggs and all nuts are still strictly off limits because they are IgE mediated allergies for him (he reacts immediately). Dairy, however, has always been questionable. The prospect of opening up his diet to include dairy is a beautiful beautiful thing. The fat, the calories, the variety, the possibilities!! On the other hand, we might be doing more psychological damage here as we allow the kid to indulge in macaroni and cheese, pizza, milkshakes, and full fat cheddar cheese only to take them all away again in a couple of months if the Budesonide course is unsuccessful. So, where there's an up, there's always a down. Seven weeks to the next scope.
Monday, February 7, 2011
Roid Rage?
Roo's been taking his Budesonide-raspberry sorbetto slurry two times a day for just over a week. The first few days were bad - vomiting, crying, food refusal, the gamut. The next few days were a little better, meaning, he didn't vomit. A couple of times in there he even acted ravenous. Then, yesterday he was back to his old tricks. He didn't eat much, just wanted to sit and suck his thumb. He did not vomit but he did give us the old shivery-faced pucker that usually indicates he's about to spew after taking a bite of something that's not agreeing with him. In this case it was chicken, one of his usual favorites.
Then there's the part where he's become sulky and angry, throwing things both generally and at human targets, insomnia - his, and as a result, ours. Oh, and plenty of blatant disobedience. It's unclear whether he's experiencing some sort of toddler Roid Rage or if he's just being a 2.5-year-old boy who had 4 days off from school last week. Either way it's out of character and I won't be sorry to see this phase end. Soon.
This course of steroids will last 8 weeks and then he'll get another scope to determine whether or not it worked. Of course, I've been scouring the Internet - always a highly recommended activity when attempting to self-diagnose - and it appears as though many (most? all?) EoE sufferers who respond to the Budesonide treatment respond fully within 2 weeks. Fingers crossed.
Then there's the part where he's become sulky and angry, throwing things both generally and at human targets, insomnia - his, and as a result, ours. Oh, and plenty of blatant disobedience. It's unclear whether he's experiencing some sort of toddler Roid Rage or if he's just being a 2.5-year-old boy who had 4 days off from school last week. Either way it's out of character and I won't be sorry to see this phase end. Soon.
This course of steroids will last 8 weeks and then he'll get another scope to determine whether or not it worked. Of course, I've been scouring the Internet - always a highly recommended activity when attempting to self-diagnose - and it appears as though many (most? all?) EoE sufferers who respond to the Budesonide treatment respond fully within 2 weeks. Fingers crossed.
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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