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!
Wednesday, October 27, 2010
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?
Friday, October 1, 2010
Wait Listed
No surprise here, but Roo has an oral motor delay. He doesn't lateralize his tongue properly to move food where it needs to be in order to chew. His jaw is weak and uncoordinated - no rotary chew pattern here. He exhibits a "palate mash" in which he uses his tongue to smash food against the roof of his mouth rather than actually chewing it. He has a narrowed palate (probably caused by the incessant thumb sucking) that makes it difficult for him to deal with thick liquids and purees (and yogurt, apple sauce, soup, mashed potatoes, etc.) Coupled with a raw, red esophagus, it's no wonder the kid gags all the time. Happily, his diagnosis is once again official, twice monthly speech therapy should help, and our insurance should cover it.
Unhappily, we've been wait-listed by the speech therapist. I guess I should have coached him better to let the food dribble out of his mouth or not to stick out his tongue when prompted. Either that or we should have sent him to speech therapy prep classes to get his chewing scores up for his applications. But no. Too late. Wait listed.
In reality, The List is not based so much on level of need as it is on who signed up first. I'm not sure which way is more fair, but either way, we are not at the top of the list. The scheduling nurse did offer to let me give them a call every month or so just to see if there might be an opening. I'll be sure to send her some flowers for the generosity.
So, I'm checking out those nifty early intervention programs I've heard about. The danger again is that there's a waiting list and in less than 6 months Roo will no longer qualify for early intervention when he turns 3. We're also open to a local speech therapist that is not associated with our hospital. Any recommendations around Chicago/Western Suburbs? We need a facility that offers feeding therapy. It looks like there are lots of speech options, but many don't do feeding.
For now I'm the therapist. I'm reading everything I can find on oral delays, feeding therapies, etc. I've got my Nuk brushes, my chewy tubes in varying colors and hardnesses, and this terrifying vibrating maniacal clown that Roo has deemed, "Helper Boy". Helper Boy gives kisses on his cheeks and then he can bite Helper Boy's hands to wake up his mouth and get him ready to eat. Disturbing on many levels, I realize. I'll bring down the mirror because it's supposed to help him to be able to see where he puts the food. We're practicing biting on the side, using molars, and chewing up and down like various animals. As if we didn't have enough to worry about at meal time, right? I'm just keeping my fingers crossed that this helps.
Unhappily, we've been wait-listed by the speech therapist. I guess I should have coached him better to let the food dribble out of his mouth or not to stick out his tongue when prompted. Either that or we should have sent him to speech therapy prep classes to get his chewing scores up for his applications. But no. Too late. Wait listed.
In reality, The List is not based so much on level of need as it is on who signed up first. I'm not sure which way is more fair, but either way, we are not at the top of the list. The scheduling nurse did offer to let me give them a call every month or so just to see if there might be an opening. I'll be sure to send her some flowers for the generosity.
So, I'm checking out those nifty early intervention programs I've heard about. The danger again is that there's a waiting list and in less than 6 months Roo will no longer qualify for early intervention when he turns 3. We're also open to a local speech therapist that is not associated with our hospital. Any recommendations around Chicago/Western Suburbs? We need a facility that offers feeding therapy. It looks like there are lots of speech options, but many don't do feeding.
For now I'm the therapist. I'm reading everything I can find on oral delays, feeding therapies, etc. I've got my Nuk brushes, my chewy tubes in varying colors and hardnesses, and this terrifying vibrating maniacal clown that Roo has deemed, "Helper Boy". Helper Boy gives kisses on his cheeks and then he can bite Helper Boy's hands to wake up his mouth and get him ready to eat. Disturbing on many levels, I realize. I'll bring down the mirror because it's supposed to help him to be able to see where he puts the food. We're practicing biting on the side, using molars, and chewing up and down like various animals. As if we didn't have enough to worry about at meal time, right? I'm just keeping my fingers crossed that this helps.
Tuesday, September 28, 2010
One Luft Balloon
With one kid, the doctor's office is all fun and games. Let's read a book, sit on my lap, the doctor's going to listen to your heart now, I'll hold down your arms straight-jacket-style while the nurse impales you with a couple of needles and we'll go home with a sticker and a lollipop. With twins, you see, it's not so easy.
2.5 year check-ups for Bean and Roo yesterday. Allow me to set the scene...two hyper, diapered 2-year-olds, roused prematurely from their naps, chase each other around the examining room vying for my iPhone, which as it turns out, is the only mode of suitable (though somewhat questionably so) entertainment I've remembered to bring along. Bean, being the bigger and stronger of the two, rips the phone from Roo's hands with ease and positions herself facing a corner. Roo, smaller, but much scrappier and utterly fearless, climbs onto the plastic chair that is positioned too close to the examining table, scampers onto the table, and with a running leap jumps directly onto his sister's head from a height that is greater than either of them. The phone crashes to the ground, two toddlers wail, the doctor knocks, and we're just getting started.
Fast forward to vaccines. Flu shot for Bean, Pneumococcal conjugate for both (Roo gets his special egg-free flu shot at the allergist). Imagine you are 2 years old and your greatest fear in life is that you might one day need a shot. Now, imagine that not only is your mother requiring you to submit to this horrendous and seemingly inexplicable form of torture, but first, you must watch your sister suffer. When she stops writhing and sobbing long enough for me to get a hand on you, guess what? Your turn! And oh yeah, I forgot the lollipops, so Bean gets the soggy half-chewed ring-pop she started 3 weeks ago. Roo, one linty organic pop from the bowels of my purse coming right up.
Feeling guilty about my lack of pre-planning for the appointment, I attempted to regain the love of my children by stopping at the grocery store for balloons on the way home. Having been brainwashed by their father, they both bypassed the princesses and superheroes in favor of football balloons. With mylar footballs in hand, shots were forgotten, Mom was forgiven, and all was well with the world. Until of course, in all her enthusiasm to show Daddy her Chicago Bears balloon, Bean managed to shake hers right off the string and away it went. One luft balloon filled with unspeakable sadness.
2.5 year check-ups for Bean and Roo yesterday. Allow me to set the scene...two hyper, diapered 2-year-olds, roused prematurely from their naps, chase each other around the examining room vying for my iPhone, which as it turns out, is the only mode of suitable (though somewhat questionably so) entertainment I've remembered to bring along. Bean, being the bigger and stronger of the two, rips the phone from Roo's hands with ease and positions herself facing a corner. Roo, smaller, but much scrappier and utterly fearless, climbs onto the plastic chair that is positioned too close to the examining table, scampers onto the table, and with a running leap jumps directly onto his sister's head from a height that is greater than either of them. The phone crashes to the ground, two toddlers wail, the doctor knocks, and we're just getting started.
Fast forward to vaccines. Flu shot for Bean, Pneumococcal conjugate for both (Roo gets his special egg-free flu shot at the allergist). Imagine you are 2 years old and your greatest fear in life is that you might one day need a shot. Now, imagine that not only is your mother requiring you to submit to this horrendous and seemingly inexplicable form of torture, but first, you must watch your sister suffer. When she stops writhing and sobbing long enough for me to get a hand on you, guess what? Your turn! And oh yeah, I forgot the lollipops, so Bean gets the soggy half-chewed ring-pop she started 3 weeks ago. Roo, one linty organic pop from the bowels of my purse coming right up.
Feeling guilty about my lack of pre-planning for the appointment, I attempted to regain the love of my children by stopping at the grocery store for balloons on the way home. Having been brainwashed by their father, they both bypassed the princesses and superheroes in favor of football balloons. With mylar footballs in hand, shots were forgotten, Mom was forgiven, and all was well with the world. Until of course, in all her enthusiasm to show Daddy her Chicago Bears balloon, Bean managed to shake hers right off the string and away it went. One luft balloon filled with unspeakable sadness.
Wednesday, September 22, 2010
Off the Sauce
The verdict is in and while it wasn't what we wanted to hear, at least we can begin healing up Roo's welted, pus-ridden esophagus now. I still have no idea how or why we didn't notice any change in eating habits, behavior, etc. with the reintroduction of milk last spring, but I do know that all those cheddar goldfish crackers and ice cream cones this summer were not as innocuous and they seemed. Aside from the white plaques and pus, his eosinophil count was back up to 20-30 hpf (per high power field in the microscope). Normal is zero. Chronic GERD sufferers can have up to about 5. Our hospital makes the EE diagnosis with 20 hpf, some places diagnose anyone above 15 hpf. So, it could be worse since his initial count was 70-80 hpf a year ago, but needless to say we've eliminated dairy once again.
Believe it or not I'm still waiting to hear what our official course of action is from the doctor's office. We've been instructed to take away all the milk, whey, casein, etc. and we've made the switch back to soy infant formula with much less kicking and screaming than I anticipated. I'm guessing we'll need to rescope in 8-10 weeks to see if he's clean but don't know for sure.
We're heading back to speech therapy for a new evaluation on Friday. I can hardly wait. I am so looking forward to a day when every meal takes less than an hour to consume. He tries but he's just so painfully slow, and then of course, there's the constant threat of the gag. He threw up Saturday night moments before the babysitter arrived, and gagged on a chick pea at breakfast this morning. I don't know what I was thinking with the chick pea. Just got a little ahead of myself, I guess. Depending on how the new evaluation goes, we might need to start looking into some early intervention programs for the oral delay. Hmmm...why do I feel like I've been here before?
Believe it or not I'm still waiting to hear what our official course of action is from the doctor's office. We've been instructed to take away all the milk, whey, casein, etc. and we've made the switch back to soy infant formula with much less kicking and screaming than I anticipated. I'm guessing we'll need to rescope in 8-10 weeks to see if he's clean but don't know for sure.
We're heading back to speech therapy for a new evaluation on Friday. I can hardly wait. I am so looking forward to a day when every meal takes less than an hour to consume. He tries but he's just so painfully slow, and then of course, there's the constant threat of the gag. He threw up Saturday night moments before the babysitter arrived, and gagged on a chick pea at breakfast this morning. I don't know what I was thinking with the chick pea. Just got a little ahead of myself, I guess. Depending on how the new evaluation goes, we might need to start looking into some early intervention programs for the oral delay. Hmmm...why do I feel like I've been here before?
Friday, September 17, 2010
Still Waiting
They wouldn't make us wait and wonder over the weekend, would they? Still waiting for the call...
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