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 scope. Show all posts
Showing posts with label scope. Show all posts
Wednesday, May 4, 2011
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, 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.
Wednesday, January 26, 2011
Law of Attraction
We're still waiting on the biopsy results from the last upper endoscopy but as I mentioned, the scoping doctor already crushed any lingering hope we might have had that Roo's improved. So, I've been sitting here stewing for the past week trying to wrap my head around the idea that this EoE crap isn't something he's going to simply outgrow. The allergies continue to increase with no signs of outgrowing anything. I'm preparing myself for the placement of a g-tube. I've joined a couple of online support groups for families dealing with eosinophilic disorders. I'm thinking about how the rest of us will continue to take meals when Roo is the pariah with the tube. I've put all our air travel plans on hold until the little kids are in college.
Before this latest scope, Roo was doing better. Really better. He was eating enthusiastically, trying new foods, gaining weight for crying out loud. He was happy, enjoying school, running around like the crazy 2-year-old he's supposed to be. Then, all it takes is one scope where some doctor we've never seen before in our lives tells us that he has made absolutely no improvement and we are worse off than when we started. Now Roo's suddenly acting uncomfortable and grasping his throat when he eats. He's vomiting again. He still has the remnants of the croupy cough he developed from the breathing tube. He's waking up several times at night. We've increased his allergy suspect list to include:
tomatoes
corn
fructose
food dyes
cinnamon
yeast
lentils
peas
lamb
soy
wheat
(in addition to dairy, egg, peanuts, tree nuts, apple, peach, and beef of course)
I'm spending countless hours re-imagining our lives as a family - no unnecessary travel, few - if any restaurant meals, limited play dates, private school (home school?) since I can't trust the public school (or maybe ANY school) to provide a safe eating environment for him let alone prepare food he can actually eat. And it sucks. We sit and wallow and wait for the next shoe to drop because while I thought we'd lost our best pair months ago, it looks like we're dealing with a centipede.
The more we sit at the hospital doing tests, the more research I do, the more EoE families I talk to, the worse Roo's symptoms seem to become. This cannot all be in my head. Every time he takes a small step forward someone comes out of the woodwork to take it away and push him back down and I'm so tired of it. I know it's a long road but we've been at this for over 18 months now. He has earned the right to some forward progress.
Yes, it may be a bit flaky even for me but I'm totally buying into the Law of Attraction here. If you're unfamiliar, the Law of Attraction is this metaphysical, unsubstantiated, Oprah-endorsed theory that basically rests on the belief that like attracts like. If you have positive, happy, healthy thoughts then positive, happy, healthy things will come to you. On the contrary, when you sit in the doctor's office attached to a bunch of tubes and wires being told how unbelievably sick you are day after day, you're likely to feel sicker.
Our biopsy phone call should come today or tomorrow.
Before this latest scope, Roo was doing better. Really better. He was eating enthusiastically, trying new foods, gaining weight for crying out loud. He was happy, enjoying school, running around like the crazy 2-year-old he's supposed to be. Then, all it takes is one scope where some doctor we've never seen before in our lives tells us that he has made absolutely no improvement and we are worse off than when we started. Now Roo's suddenly acting uncomfortable and grasping his throat when he eats. He's vomiting again. He still has the remnants of the croupy cough he developed from the breathing tube. He's waking up several times at night. We've increased his allergy suspect list to include:
tomatoes
corn
fructose
food dyes
cinnamon
yeast
lentils
peas
lamb
soy
wheat
(in addition to dairy, egg, peanuts, tree nuts, apple, peach, and beef of course)
I'm spending countless hours re-imagining our lives as a family - no unnecessary travel, few - if any restaurant meals, limited play dates, private school (home school?) since I can't trust the public school (or maybe ANY school) to provide a safe eating environment for him let alone prepare food he can actually eat. And it sucks. We sit and wallow and wait for the next shoe to drop because while I thought we'd lost our best pair months ago, it looks like we're dealing with a centipede.
The more we sit at the hospital doing tests, the more research I do, the more EoE families I talk to, the worse Roo's symptoms seem to become. This cannot all be in my head. Every time he takes a small step forward someone comes out of the woodwork to take it away and push him back down and I'm so tired of it. I know it's a long road but we've been at this for over 18 months now. He has earned the right to some forward progress.
Yes, it may be a bit flaky even for me but I'm totally buying into the Law of Attraction here. If you're unfamiliar, the Law of Attraction is this metaphysical, unsubstantiated, Oprah-endorsed theory that basically rests on the belief that like attracts like. If you have positive, happy, healthy thoughts then positive, happy, healthy things will come to you. On the contrary, when you sit in the doctor's office attached to a bunch of tubes and wires being told how unbelievably sick you are day after day, you're likely to feel sicker.
Our biopsy phone call should come today or tomorrow.
Wednesday, January 19, 2011
Scope 5
Once again things didn't go according to plan. I don't know why I keep setting expectations for these things anyway. The EoE is still there. There were clear visible signs in the photos and Super EoE Doc informed us he's very well versed in judging the photos and well, the EoE's still there and active. Of course the official biopsy results will be back some time next week but it doesn't really matter.
The polyp is still there but on a bright note, today's physician claimed it is not a polyp but rather a "bump", which is great since now there are more of them. He claims they are associated with EoE and are further evidence that the allergy cells are still alive and thriving. He took a sample of the biggest bump just to be sure.
To add to the excitement, Roo is once again experiencing croup following the breathing tube and anesthesia. He seems to have a reactive airway which means we got to spend a couple of extra hours in recovery while he coughed up blood, received nebulizer treatments, and got some steroids via IV. We're keeping our fingers crossed that it helps prevent another ER visit tonight.
We're crushed. Had big hopes for this one. He's off everything he was off when he got a clean scope over a year ago so we're back to square one. We're still a step away from tube feedings but this is a dangerous path we're on. I fear we're just really getting started.
The polyp is still there but on a bright note, today's physician claimed it is not a polyp but rather a "bump", which is great since now there are more of them. He claims they are associated with EoE and are further evidence that the allergy cells are still alive and thriving. He took a sample of the biggest bump just to be sure.
To add to the excitement, Roo is once again experiencing croup following the breathing tube and anesthesia. He seems to have a reactive airway which means we got to spend a couple of extra hours in recovery while he coughed up blood, received nebulizer treatments, and got some steroids via IV. We're keeping our fingers crossed that it helps prevent another ER visit tonight.
We're crushed. Had big hopes for this one. He's off everything he was off when he got a clean scope over a year ago so we're back to square one. We're still a step away from tube feedings but this is a dangerous path we're on. I fear we're just really getting started.
Tuesday, January 18, 2011
Big Day
Barring any unforeseen, or, since big sister is infected with some sort of hack-inducing bug, foreseen complications, Roo's long awaited 5th scope is tomorrow morning at 7 am sharp. So, in order of preference, my wish list goes something like this:
1. No more polyp or other strange masses
2. Assuming wish #1 doesn't work out, polyp biopsy comes back negative for anything truly nasty (assuming they remember to take one this time grr....!)
3. EoE scope is clean (i.e. no allergy cells in the esophagus)
4. No emergency room visit tomorrow night
5. Massive rapid weight gain over next several months
6. Successful reintroduction of dairy in 6 months or so followed by...
7. Outgrowing of additional current allergies and no new ones ever
They reminded me that I have to bring him his own juice to drink in recovery since the standard offering is apple juice. Even on The Island of Misfit Toys we're misfits.
1. No more polyp or other strange masses
2. Assuming wish #1 doesn't work out, polyp biopsy comes back negative for anything truly nasty (assuming they remember to take one this time grr....!)
3. EoE scope is clean (i.e. no allergy cells in the esophagus)
4. No emergency room visit tomorrow night
5. Massive rapid weight gain over next several months
6. Successful reintroduction of dairy in 6 months or so followed by...
7. Outgrowing of additional current allergies and no new ones ever
They reminded me that I have to bring him his own juice to drink in recovery since the standard offering is apple juice. Even on The Island of Misfit Toys we're misfits.
Wednesday, January 12, 2011
Vague Intentions
Happy New Year!
Typically I'm a resolutions girl. I love a good, measurable, finite challenge. Resolutions past include:
So a slacker's list it is. My vague intentions for 2011 are not revolutionary by any means but they all lean toward achieving some semblance of personal balance that's been lacking since, well, I suppose since I got pregnant with twins in 2007. Write more. Sweat more. Eat more good stuff and less bad stuff. Spend less. Play more. Worry less.
Roo threw up carrots at school yesterday. Next scope is 1/19. Baby steps on that worry part.
Typically I'm a resolutions girl. I love a good, measurable, finite challenge. Resolutions past include:
- Lose 25 pounds
- Run the Chicago marathon
- Try a new recipe every week
- Learn to play tennis
- Take more writing classes
- Become licensed massage therapist
- Start a blog
- Publish something...anything
So a slacker's list it is. My vague intentions for 2011 are not revolutionary by any means but they all lean toward achieving some semblance of personal balance that's been lacking since, well, I suppose since I got pregnant with twins in 2007. Write more. Sweat more. Eat more good stuff and less bad stuff. Spend less. Play more. Worry less.
Roo threw up carrots at school yesterday. Next scope is 1/19. Baby steps on that worry part.
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