They just pushed Roo's scope out 2 weeks to January 19. Seems Dr. XYZ who will be performing the scope has a meeting he cannot miss on Jan 6. Our next option is the 19th. Because what's another two weeks when there might be a mass growing in your child's esophagus? Merry Christmas.
The search for a new team starts now. Anyone have any opinions about Comer Children's Hospital (U of Chicago)?
Tuesday, December 21, 2010
Tuesday, December 14, 2010
Results? What results?
For those of you anxiously awaiting results from Roo's big polyp biopsy last month, you might want to get comfortable. In a sudden 180, the hospital now claims that no polyp biopsy was ever taken. I beg to differ seeing as...
1. I spoke directly with the doctor who performed the scope immediately following the procedure. He showed me pictures of the polyp and assured me that he took biopsies from the polyp itself, as well as the surrounding tissue. Results would be back in about a week.
2. After calling to follow up for over a week with no results, our case managing nurse practitioner contacted the scoping doctor to be sure that he had in fact taken biopsies. She reported back to me that he did, they were just taking a while in pathology.
3. Most convincing to me is that who in their right mind, while in the midst of scoping and taking biopsies from a sedated toddler's esophagus, upon discovering a foreign mass would choose NOT to take a sample of it?! Wait for another day? Another round of general anesthesia?
Well, anyway, that's the story I'm getting. With back paddles splashing faster than a rafting team heading for a waterfall, our GI team claims that a miscommunication led to my erroneous assumption that a polyp biopsy was ever taken. In addition, pediatric esophageal polyps are nearly always benign and it's no big deal because we'll take another look at his next scope. And this time the one doctor who really knows about EoE will do the scope - you know, the one we wanted to see but couldn't get an appointment with because he gets really really booked up with the patients who opted into his research study on EoE? Really? Mind if I take a knife to your kid's throat repeatedly? If I don't get what we're looking for, don't worry about it. I'll call in someone who does. It will probably be fine.
I've had a couple of weeks to let this sink in now and the initial fury has dissipated to a more general seethe. Basically we can't change anything at this point. There's not exactly an abundance of brilliant, well-funded, pediatric EoE teams even in our booming metropolis. I'm beginning to take a hard look, however, at what that brilliant team from the well-funded hospital is getting us. Maybe small, independent, and kind of smart is more our speed.
1. I spoke directly with the doctor who performed the scope immediately following the procedure. He showed me pictures of the polyp and assured me that he took biopsies from the polyp itself, as well as the surrounding tissue. Results would be back in about a week.
2. After calling to follow up for over a week with no results, our case managing nurse practitioner contacted the scoping doctor to be sure that he had in fact taken biopsies. She reported back to me that he did, they were just taking a while in pathology.
3. Most convincing to me is that who in their right mind, while in the midst of scoping and taking biopsies from a sedated toddler's esophagus, upon discovering a foreign mass would choose NOT to take a sample of it?! Wait for another day? Another round of general anesthesia?
Well, anyway, that's the story I'm getting. With back paddles splashing faster than a rafting team heading for a waterfall, our GI team claims that a miscommunication led to my erroneous assumption that a polyp biopsy was ever taken. In addition, pediatric esophageal polyps are nearly always benign and it's no big deal because we'll take another look at his next scope. And this time the one doctor who really knows about EoE will do the scope - you know, the one we wanted to see but couldn't get an appointment with because he gets really really booked up with the patients who opted into his research study on EoE? Really? Mind if I take a knife to your kid's throat repeatedly? If I don't get what we're looking for, don't worry about it. I'll call in someone who does. It will probably be fine.
I've had a couple of weeks to let this sink in now and the initial fury has dissipated to a more general seethe. Basically we can't change anything at this point. There's not exactly an abundance of brilliant, well-funded, pediatric EoE teams even in our booming metropolis. I'm beginning to take a hard look, however, at what that brilliant team from the well-funded hospital is getting us. Maybe small, independent, and kind of smart is more our speed.
Monday, November 22, 2010
Peaches and apples and beef, oh my!
Still no word on the polyp but not for my lack of asking. In fact due to my recent, frequent repetition, the word, polyp, has officially lost all meaning. Polyp. polyp. polYp. But I digress. The real reason for this post has absolutely nothing to do with, ahem, polyps.
Patch testing rocks. Aside from the mild discomfort, the 3 separate hour-long trips back and forth to the allergist's office all during nap time of course, and the gray rectangular tape marks that refuse to dislodge from Roo's back, I love patch testing.
Care to join me in my beef dance? That's a big fat positive to beef, baby! Take that doctors who think I've lost my mind. My boy is allergic - and I mean red, puffy, welty-skinned ALLERGIC to beef! So aside from getting to gloat a bit about how I was right, the positive beef patch test gives me reason to believe that there's a chance, however slim it might be, that his next scope might be clean. Regardless of the scope, clearly beef is not helping the kid out, so it's nice to have that matter settled.
The not so exciting, yet equally interesting piece of the puzzle is that he also tested positive to apple and peach. Who the heck is allergic to apples? Aren't apples one of the first baby foods you introduce? Right after homemade organic butternut squash and pear of course. So, yup, in retrospect, he's been having symptoms I can relate to apple. Like, the frequent vomiting after drinking apple juice. How did I miss that one? I guess that fact that he adores apples clouded my judgment. Well now I know. And peach? I can't even remember him having peach but I'm sure I offered it more than a time or two. Nix peach.
So, as much as I loathe the ever increasing list of foods to avoid (peanuts, tree nuts, egg, milk, beef, apple, peach) I'm happy that we might be making some progress. I'm thrilled that we might have an explanation for why his symptoms never subsided - namely because we started giving him copious amounts of beef following his one clean scope. And, dare I say it, I think he might not be allergic to milk. Yes yes, I get it, I know, don't get your hopes up. But still, the patch was negative for milk. Could there be hope? Because I've got to tell you, if his body's open to bargaining, I'd trade milk for beef/apple/peach in an instant.
Patch testing rocks. Aside from the mild discomfort, the 3 separate hour-long trips back and forth to the allergist's office all during nap time of course, and the gray rectangular tape marks that refuse to dislodge from Roo's back, I love patch testing.
Care to join me in my beef dance? That's a big fat positive to beef, baby! Take that doctors who think I've lost my mind. My boy is allergic - and I mean red, puffy, welty-skinned ALLERGIC to beef! So aside from getting to gloat a bit about how I was right, the positive beef patch test gives me reason to believe that there's a chance, however slim it might be, that his next scope might be clean. Regardless of the scope, clearly beef is not helping the kid out, so it's nice to have that matter settled.
The not so exciting, yet equally interesting piece of the puzzle is that he also tested positive to apple and peach. Who the heck is allergic to apples? Aren't apples one of the first baby foods you introduce? Right after homemade organic butternut squash and pear of course. So, yup, in retrospect, he's been having symptoms I can relate to apple. Like, the frequent vomiting after drinking apple juice. How did I miss that one? I guess that fact that he adores apples clouded my judgment. Well now I know. And peach? I can't even remember him having peach but I'm sure I offered it more than a time or two. Nix peach.
So, as much as I loathe the ever increasing list of foods to avoid (peanuts, tree nuts, egg, milk, beef, apple, peach) I'm happy that we might be making some progress. I'm thrilled that we might have an explanation for why his symptoms never subsided - namely because we started giving him copious amounts of beef following his one clean scope. And, dare I say it, I think he might not be allergic to milk. Yes yes, I get it, I know, don't get your hopes up. But still, the patch was negative for milk. Could there be hope? Because I've got to tell you, if his body's open to bargaining, I'd trade milk for beef/apple/peach in an instant.
Friday, November 19, 2010
Wacky pathology jokes
At this point the pediatric pathology department is clearly playing a cruel joke, the butt of which is undoubtedly me. I was mad at first but I guess if anyone needs a good laugh, it's those guys.
I checked in with our CNP in GI again yesterday and while she still has not received word from The Pathologist regarding the polyp, she did thank me for my patience.
So, after the obvious, did they lose the biopsies(?!) my question is this: Am I to believe that hidden deep in the recesses of one of the world's best funded hospitals for children there resides exactly one pathologist? The backlog truly must be enormous. With resources so strapped, is he working by candlelight? No wonder there isn't time to reply to email since the time change. Dusk comes so early these days. Has anyone considered the idea of hiring a nurse? an assistant? how about an intern to answer emails? Heck, maybe it's time to throw caution to the wind and bring in another speech therapist while we're at it.
The anxiety of the past two weeks is waning only because my body can maintain that level of stress for this duration. Basically, I don't have that kind of time.
Fortunately I've been able to refocus my efforts on trying to discern the strange bumps and blotches on Roo's back following patch testing this week. For those of you unfamiliar with patch testing, imagine 30 tiny, dime-size cups of various substances (oh you know, chicken, green beans, fish, wheat, that sort of thing) adhered with surgical tape to your back for 48 hours (see Exhibit A). Stinky? A bit. Uncomfortable? A little. Informative? We'll see. Roo goes for his final reading with the allergist today. To me it looks like something flared overnight, but as we all know, I've been wrong before.
Exhibit A
I checked in with our CNP in GI again yesterday and while she still has not received word from The Pathologist regarding the polyp, she did thank me for my patience.
So, after the obvious, did they lose the biopsies(?!) my question is this: Am I to believe that hidden deep in the recesses of one of the world's best funded hospitals for children there resides exactly one pathologist? The backlog truly must be enormous. With resources so strapped, is he working by candlelight? No wonder there isn't time to reply to email since the time change. Dusk comes so early these days. Has anyone considered the idea of hiring a nurse? an assistant? how about an intern to answer emails? Heck, maybe it's time to throw caution to the wind and bring in another speech therapist while we're at it.
The anxiety of the past two weeks is waning only because my body can maintain that level of stress for this duration. Basically, I don't have that kind of time.
Fortunately I've been able to refocus my efforts on trying to discern the strange bumps and blotches on Roo's back following patch testing this week. For those of you unfamiliar with patch testing, imagine 30 tiny, dime-size cups of various substances (oh you know, chicken, green beans, fish, wheat, that sort of thing) adhered with surgical tape to your back for 48 hours (see Exhibit A). Stinky? A bit. Uncomfortable? A little. Informative? We'll see. Roo goes for his final reading with the allergist today. To me it looks like something flared overnight, but as we all know, I've been wrong before.
Exhibit A
Monday, November 15, 2010
Not yet...
Still waiting on those polyp results. Perhaps tomorrow? Our CNP is contacting the pathologist to find out what's taking so long. Fingers crossed.
Wednesday, November 10, 2010
My latest beef...
Roo's latest EoE scope results are in and it appears that "good" news we've been hoping for will have to wait for another week. The eosinophils are still in full force. Actually, they've reduced ever so subtly in the mid-esophagus but are thick as ever in the distal esophagus. So, essentially we took dairy out of his diet (again) for seven weeks, sedated the kids, stuck a camera down his throat and now we know....absolutely nothing more than we did seven weeks ago.
Maybe milk isn't the culprit after all? Or it's not the only one? Maybe there's a new allergy? Or allergies? We have no idea. We're no closer to an answer but it does help explain why Roo continues to vomit regularly. There's still the lingering possibility of beef, but everyone I mention it to starts talking to me like I'm pushing a shopping cart down the highway wearing a bird carcass on my head.
I am getting a thorough education in the ways my own body manifests stress...pimples, inexplicable exhaustion, my own GI trouble of which I'll save the gory details, living in gym clothes without venturing anywhere near the gym, constant overwhelming urge to drink milkshakes, and infrequent showering have all become par for the course because when you look good, you feel good.
The polyp biopsies have been sent to a different lab for pathology. We wont have them until Monday. Until then all I really want to do is drink wine, eat chocolate, and sob quietly whenever the mood strikes. Should be another stellar weekend.
Maybe milk isn't the culprit after all? Or it's not the only one? Maybe there's a new allergy? Or allergies? We have no idea. We're no closer to an answer but it does help explain why Roo continues to vomit regularly. There's still the lingering possibility of beef, but everyone I mention it to starts talking to me like I'm pushing a shopping cart down the highway wearing a bird carcass on my head.
I am getting a thorough education in the ways my own body manifests stress...pimples, inexplicable exhaustion, my own GI trouble of which I'll save the gory details, living in gym clothes without venturing anywhere near the gym, constant overwhelming urge to drink milkshakes, and infrequent showering have all become par for the course because when you look good, you feel good.
The polyp biopsies have been sent to a different lab for pathology. We wont have them until Monday. Until then all I really want to do is drink wine, eat chocolate, and sob quietly whenever the mood strikes. Should be another stellar weekend.
Tuesday, November 9, 2010
RAST
RAST results are in. New additions to the life-threatening list...
Walnuts
Hazelnuts
Pecans
Macadamia nuts
and of course...the dreaded peanut, which we already knew about. Could really use a little good news this week.
Walnuts
Hazelnuts
Pecans
Macadamia nuts
and of course...the dreaded peanut, which we already knew about. Could really use a little good news this week.
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