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.
Wednesday, November 10, 2010
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.
Saturday, November 6, 2010
Same day. Different hospital.
Sooooo...let's just say things didn't go exactly according to plan yesterday. We started out well enough with Roo and I both surprisingly chipper to be up well before dawn. He was a regular bundle of cotton candy and kisses, spotting city buses with a commuter's precision, singing endless verses of The Wheels on the Bus, practically bursting the seems of his blue stripey pj's and woolen winter hat with incomparable cuteness. It wasn't until we neared the hospital 30 minutes away that he started to wane.
"I want my Kaloo."
Oh crap. Kaloo. Imagine my horror at realizing mere moments from IV insertion, that I had forgotten Roo's beloved Kaloo bunny at home. I mean, we don't go to the grocery store without Kaloo. Surgery? Are you kidding?
Somehow we made it through the procedure but it wasn't pretty. He had a rougher time coming around from the anesthesia than I've grown accustomed to, and the fact that he was hacking like a seal and spewing bloody saliva afterward didn't help matters. That hadn't happened before.
The immediate results from the scope were mediocre at best.
Good news: the GI doc performing the scope did not see evidence of furrowing or white plaques that were spotted last time.
Bad news: There's a polyp in Roo's esophagus and he has no idea what it is.
Obviously we won't know anything definitive until the biopsies are back late next week. Until then, we wait.
Having conquered the beast that is toddler surgery, Mufasa and I were all too happy to turn into bed early to face the polyp issue with clear heads in the morning. Our sweet dreams were soured, salted, and stewed at 2:30 am when Roo awoke barking, sobbing, vomiting, and gasping for air. I've experienced the Stridor of Croup a few times in this motherhood stint but this was different. The kid couldn't catch his breath, his stomach was sucking in so far in with every breath I swear I was seeing his spine. He was throwing up and choking. Then his lips started getting a little blue. Off to the ER.
Two breathing treatments, a second IV in 24 hours, plenty of steroids, more vomiting, 2 rectal temps, and 4 and a half hours later we came home. He's bruised, coughing, exhausted, and covered in medical tape he won't let us peel off, but as usual, still smiling. So hoping tonight is less eventful.
"I want my Kaloo."
Oh crap. Kaloo. Imagine my horror at realizing mere moments from IV insertion, that I had forgotten Roo's beloved Kaloo bunny at home. I mean, we don't go to the grocery store without Kaloo. Surgery? Are you kidding?
Somehow we made it through the procedure but it wasn't pretty. He had a rougher time coming around from the anesthesia than I've grown accustomed to, and the fact that he was hacking like a seal and spewing bloody saliva afterward didn't help matters. That hadn't happened before.
The immediate results from the scope were mediocre at best.
Good news: the GI doc performing the scope did not see evidence of furrowing or white plaques that were spotted last time.
Bad news: There's a polyp in Roo's esophagus and he has no idea what it is.
Obviously we won't know anything definitive until the biopsies are back late next week. Until then, we wait.
Having conquered the beast that is toddler surgery, Mufasa and I were all too happy to turn into bed early to face the polyp issue with clear heads in the morning. Our sweet dreams were soured, salted, and stewed at 2:30 am when Roo awoke barking, sobbing, vomiting, and gasping for air. I've experienced the Stridor of Croup a few times in this motherhood stint but this was different. The kid couldn't catch his breath, his stomach was sucking in so far in with every breath I swear I was seeing his spine. He was throwing up and choking. Then his lips started getting a little blue. Off to the ER.
Two breathing treatments, a second IV in 24 hours, plenty of steroids, more vomiting, 2 rectal temps, and 4 and a half hours later we came home. He's bruised, coughing, exhausted, and covered in medical tape he won't let us peel off, but as usual, still smiling. So hoping tonight is less eventful.
Thursday, November 4, 2010
Zoo pals to the rescue
At the urging of our new allergist, Roo's MedicAlert bracelet has been ordered. It's supposed to help protect him in the event of an anyphylactic emergency, among other possible catastrophes. Basically, we spent $30 on a mesh strap decorated with zoo animals. He's supposed to wear it on his wrist at all times. Engraved on it are the words SEVERELY ALLERGIC TO PEANUTS. Egg and Milk Allergy. And a 1-800 phone number for the MedicAlert hotline. So that's all great and everything, but what are the chances he keeps it on in the first place? And call me a cynic but in the event of a true emergency, as he's wheezing, swelling, and gasping for air, who pray tell, with the possible exception of a well-seasoned paramedic team, is going to think, oh, what a cute bracelet! I should see if there's any info about this kid's medical history engraved on it. Anyway, I ordered one. Marketing ploy to play on parents' worst fears is highly effective.
We've been busy on other fronts as well. Pre-op physical - check. RAST blood draw - check. Four vials of blood in exchange for a stuffed animal camel. And alas tomorrow's the big day for scope #5. That's all for this week. The little ninja gets a brief reprieve next week, then we're back to 3 a week allergist appointments for patch testing. And so it goes. I'll post scope results when we have them next week.
We've been busy on other fronts as well. Pre-op physical - check. RAST blood draw - check. Four vials of blood in exchange for a stuffed animal camel. And alas tomorrow's the big day for scope #5. That's all for this week. The little ninja gets a brief reprieve next week, then we're back to 3 a week allergist appointments for patch testing. And so it goes. I'll post scope results when we have them next week.
Wednesday, October 27, 2010
November Social Calendar
Roo had the pleasure of a 3 hour appointment with his new allergist this week. She seems qualified and knowledgeable, she pricked his back 32 times and injected various poisons looking for hives...the usual. We didn't test for nuts to avoid another exposure but he's still very positive for eggs - both yolks and whites but no new culprits appeared on the prick test, so that's positive. That and he didn't throw up even while the nurse and I pinned him to the table, pricked his back and forced him to lay face down in a puddle of his own snot for 20 minutes. On the other hand, now she has me freaked out that he probably has asthma too.
Still to come this month...
- Pre-op physical with the pediatrician
- Surgury (5th Upper Endoscopy to date to check for eosinophils since re-eliminating milk)
- Blood draw for RAST for peanuts and tree nuts
- Allergist (patch test application)
- Allergist (patch test removal)
- Allergist (patch test evaluation - all separate appointments, of course)
- Flu-shot testing
- And eventually, we hope, one flu shot, rather than the series of 4, but remains to be seen.
Can barely wait to see what's on tap for December!
Still to come this month...
- Pre-op physical with the pediatrician
- Surgury (5th Upper Endoscopy to date to check for eosinophils since re-eliminating milk)
- Blood draw for RAST for peanuts and tree nuts
- Allergist (patch test application)
- Allergist (patch test removal)
- Allergist (patch test evaluation - all separate appointments, of course)
- Flu-shot testing
- And eventually, we hope, one flu shot, rather than the series of 4, but remains to be seen.
Can barely wait to see what's on tap for December!
Monday, October 18, 2010
Vomitathon
For a while there I thought we might be trending toward less retching and spewing. Four times this week! One crying induced choke when the babysitter showed up, one regular old-fashioned gag on the very last bite of an hour long dinner session, one middle of the night milk disaster, and one inexplicable couch vomit that even he had no idea was coming.
What gives? He's off milk. Off eggs. Off nuts. Off any bites larger than a dime. He's working on his chewing and maybe even starting the get the idea, if not the hang of it quite yet. He doesn't seem to be in pain. He's happy - often immediately before he pukes and almost always immediately after. There's the runny nose factor, which always makes his feeding and throwing up worse, but if that's going to be the deciding factor, there's no recourse but to move. Runny noses are a way of life here until mid-April at least.
The thing is, I don't even care about the mess anymore. It's rather like changing a diaper - though I wouldn't mind giving up that gift of motherhood soon either, and despite the thousands of changes I've performed, I would still opt against doing it on the table of a crowded restaurant. It's all the work that goes into it. After an hour of helping to spoon tiny nibbles of hearty gnocchi in oil-rich marinara and fluffy egg-free, dairy-free meatballs into his mouth, he gives it all back on the last bite. Last night, he put away nearly half a chicken breast, couscous, and a few green beans. Happily, he fled the table, played with his beloved Silly Bandz for ten minutes, then puked all over the couch. He explained that his tummy never even hurt. He didn't know he was going to throw up. It surprised him as much as the rest of us. At least it was bath night.
Maybe the EoE's still bothering him. The next scope's set for November 5. In the interim, there's the allergist appointment, flu shot sequence, and pre-op physical preceding the scope. It's a laugh a minute for this kid.
What gives? He's off milk. Off eggs. Off nuts. Off any bites larger than a dime. He's working on his chewing and maybe even starting the get the idea, if not the hang of it quite yet. He doesn't seem to be in pain. He's happy - often immediately before he pukes and almost always immediately after. There's the runny nose factor, which always makes his feeding and throwing up worse, but if that's going to be the deciding factor, there's no recourse but to move. Runny noses are a way of life here until mid-April at least.
The thing is, I don't even care about the mess anymore. It's rather like changing a diaper - though I wouldn't mind giving up that gift of motherhood soon either, and despite the thousands of changes I've performed, I would still opt against doing it on the table of a crowded restaurant. It's all the work that goes into it. After an hour of helping to spoon tiny nibbles of hearty gnocchi in oil-rich marinara and fluffy egg-free, dairy-free meatballs into his mouth, he gives it all back on the last bite. Last night, he put away nearly half a chicken breast, couscous, and a few green beans. Happily, he fled the table, played with his beloved Silly Bandz for ten minutes, then puked all over the couch. He explained that his tummy never even hurt. He didn't know he was going to throw up. It surprised him as much as the rest of us. At least it was bath night.
Maybe the EoE's still bothering him. The next scope's set for November 5. In the interim, there's the allergist appointment, flu shot sequence, and pre-op physical preceding the scope. It's a laugh a minute for this kid.
Wednesday, October 13, 2010
Boycott
Roo's on strike, and since he's a one man union, I don't know who to contact regarding negotiations because he's not talking. Bored and irritated with my my cheek prodding, chew tube thrusting, and constant encouragement to "move it to the side", he is refusing to participate in mom-imposed speech therapy sessions.
We're at an impasse marked by lengthy standoffs where he holds lumps of soggy chicken or rice in his mouth while ever enthusiastically, I prompt him to move it to the side, and chew chew chew a hundred times or so. When that doesn't work, we pull out the mirror and I show him how disgusting it looks oozing out of his mouth - okay, I don't tell him he's disgusting, but it doesn't mean I don't think it. The mirror's supposed to help him see where he's moving the food. He prefers smearing food on the mirror to see how that looks.
I am a broken record. Move it to the side, Roo. Use your tongue. Use your tongue to move it to the side like this. OK, good try, now use your teeth. Chew it here on your back teeth. Feel it there by your cheeks? I see the food in the middle of your mouth. Can you move it to the side? Now chew like a lion! Like this, see? Swallow your bite. Did you swallow it? You did? Vigorous applause, stickers, and a three ring circus ensue when a bite is eventually swallowed. The poor kid. Even I am annoyed with me.
Is he going to outgrow this oral delay? I mean, aside from the food allergies, EoE, oral delay, and failure to thrive, he is, ahem, healthy. His gross motor skills are on track - if not outright advanced. Can most 2.5-year-olds do the monkey bars without assistance? Maybe if they weighed 22 pounds they could. His kids' gym class teacher recently recommended a "real" gymnastics gym for him after witnessing his superior balance, strength for size, and fearlessness. Of course she probably thinks he's one. He talks like a champ...for example, "Actually Bean, we watched Yo Gabba Gabba earlier. How about we watch Ralph? It's your favorite!" or "That was a little bit whiny, Bean. I don't like that. Say it again in your regular voice". Aside from the obvious exploitation of Bean for his own benefit, these are adequate sentences for toddler boy, no? He walks, he runs, he jumps, he sings, he dances, does somersaults, and flips, he builds Lego towers, pees in the toilet, and has mastered my iPhone. The kid is like a tiny ninja, so why the heck can't he chew a bite of pasta?
We're at an impasse marked by lengthy standoffs where he holds lumps of soggy chicken or rice in his mouth while ever enthusiastically, I prompt him to move it to the side, and chew chew chew a hundred times or so. When that doesn't work, we pull out the mirror and I show him how disgusting it looks oozing out of his mouth - okay, I don't tell him he's disgusting, but it doesn't mean I don't think it. The mirror's supposed to help him see where he's moving the food. He prefers smearing food on the mirror to see how that looks.
I am a broken record. Move it to the side, Roo. Use your tongue. Use your tongue to move it to the side like this. OK, good try, now use your teeth. Chew it here on your back teeth. Feel it there by your cheeks? I see the food in the middle of your mouth. Can you move it to the side? Now chew like a lion! Like this, see? Swallow your bite. Did you swallow it? You did? Vigorous applause, stickers, and a three ring circus ensue when a bite is eventually swallowed. The poor kid. Even I am annoyed with me.
Is he going to outgrow this oral delay? I mean, aside from the food allergies, EoE, oral delay, and failure to thrive, he is, ahem, healthy. His gross motor skills are on track - if not outright advanced. Can most 2.5-year-olds do the monkey bars without assistance? Maybe if they weighed 22 pounds they could. His kids' gym class teacher recently recommended a "real" gymnastics gym for him after witnessing his superior balance, strength for size, and fearlessness. Of course she probably thinks he's one. He talks like a champ...for example, "Actually Bean, we watched Yo Gabba Gabba earlier. How about we watch Ralph? It's your favorite!" or "That was a little bit whiny, Bean. I don't like that. Say it again in your regular voice". Aside from the obvious exploitation of Bean for his own benefit, these are adequate sentences for toddler boy, no? He walks, he runs, he jumps, he sings, he dances, does somersaults, and flips, he builds Lego towers, pees in the toilet, and has mastered my iPhone. The kid is like a tiny ninja, so why the heck can't he chew a bite of pasta?
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