Along the lines of my recent post on declined birthday party invitations, we don't visit much either. Friends, family, near, far, it makes no difference. We are just not much for traveling these days whether it's across the country or across town. It's not that we don't like you. In all probability we really truly do. After all you're sweet, charming, so very generous to invite us in the first place and (blush) you read my blog!
But here's the deal. Dinner parties stress me out. As a fully indoctrinated Midwesterner the rules of politeness prevent me from coming right out and saying it, but most of the time, going anywhere there is food with my kids just plain sucks.
The preparation - yes, we feed them dinner before we leave even if the invitation says 3 pm, the packing (epi-pens, Benedryl, Tupperware or other vomit catching device, full change of clothes for Roo, soy milk, safe snacks, safe treats to deploy in case of meltdown, clean shirt for me, 2nd safe dinner to eat on location, the list goes on), the worry (Are there nuts in the house? Does the pasta they made for the kids have egg in it? Do you still have the package from those crackers?), and the unknown - my kid could burst and vomit strawberries all over your plush white carpet at any moment. It's just a lot to deal with.
Then there's the weight problem. It doesn't matter what's for dinner, how adorable the plates are, or anything else. Roo simply does not eat well away from home. Maybe that's most kids, I mean, parties are supposed to be prime time for grabbing a couple of bites here and there and topping it all off with a yummy treat. But that doesn't fly for Roo. And unfortunately, he doesn't make up for it with a yummy calorie rich party dessert the way other kids might. He wants a Dum Dum lollipop and a cup of water. One poor meal for him means lost ounces. And too many of those lost ounces are when the doctors start talking about g-tubes and strict elimination diets.
So this is my confession. Please forgive me for being an ungrateful guest. I am trying. I know it's not fair to always come to our place. I know we've got to learn how to "live" with these issues, but in the interest of keeping my blood pressure intact, please do allow me my baby steps. And to all of you who keep inviting us anyway and strive to keep things nut-free and Roo-safe when we're around, who trudge to our place through both snowstorms and heatwaves from near and far, and don't roll your eyes when I read every single one of your ingredient packages for the 5th time, it means the world. Thank you!
Showing posts with label food allergies. Show all posts
Showing posts with label food allergies. Show all posts
Friday, July 22, 2011
Wednesday, July 20, 2011
Thanks for the invite, but...
I just received an invitation for a fun 3-year-old birthday party for one of Roo and Bean's little school friends. The birthday boy is a sweet kid and I like his mom a lot. Several of their friends will be there. It's not too far away. Doesn't interfere with nap. Super. Except that it's at an ice cream parlor. A nut-crusted, egg-laden ice cream parlor. So, as usual, we politely declined.
Yes if I really wanted that mom of the year award I could probably make this happen. The routine would go something like this:
1. Call J's mom and warn her of Roo's allergies. Plan to accommodate him while causing least disruption possible at party. Reject her compulsory offer to provide a "safe" treat and tell her I'll handle it.
2. Call ice cream parlor and ask about ingredients in ice cream as well as procedure for accommodating allergies (for example, changing gloves, opening fresh containers, using clean scoop, etc. to avoid cross contamination)
3. Bring back-up safe treat even if person on the phone promises on grave of loved one that none of their ice creams contain a trace of egg, nut, apple, peach, or beef (gross)
4. Arrive on party day feeling like my pants are lined with barbed wire at the prospect that a stray peanut or swipe of butter pecan accidentally migrated onto the table where Roo is sitting. Scrub table and chair with antibacterial wipes.
5. Ask person at counter AGAIN about all ice cream ingredients (usually we just stick with vanilla but it often has eggs in it so we need to be flexible). Possibly find a "safe" flavor. Ask for a fresh container to be opened, clean gloves, and clean scoop. Allow irritated glares of busy counter staff to bounce off my skin like rubber balls.
6. Sing Happy Birthday to J
7. Hover over Roo as he eats exactly 3 tiny bites of ice cream, continuously examining his legs and belly for first signs of a reaction, and completely ignoring Bean, who by this time has surely climbed into her own oversize bowl of mint chocolate chip and is swimming in the greeny goodness.
8. Leave party as quickly as possible to avoid the potential vomiting that's likely to occur after eating, allergies or not.
So, yeah, I think we'll sit this one out.
Yes if I really wanted that mom of the year award I could probably make this happen. The routine would go something like this:
1. Call J's mom and warn her of Roo's allergies. Plan to accommodate him while causing least disruption possible at party. Reject her compulsory offer to provide a "safe" treat and tell her I'll handle it.
2. Call ice cream parlor and ask about ingredients in ice cream as well as procedure for accommodating allergies (for example, changing gloves, opening fresh containers, using clean scoop, etc. to avoid cross contamination)
3. Bring back-up safe treat even if person on the phone promises on grave of loved one that none of their ice creams contain a trace of egg, nut, apple, peach, or beef (gross)
4. Arrive on party day feeling like my pants are lined with barbed wire at the prospect that a stray peanut or swipe of butter pecan accidentally migrated onto the table where Roo is sitting. Scrub table and chair with antibacterial wipes.
5. Ask person at counter AGAIN about all ice cream ingredients (usually we just stick with vanilla but it often has eggs in it so we need to be flexible). Possibly find a "safe" flavor. Ask for a fresh container to be opened, clean gloves, and clean scoop. Allow irritated glares of busy counter staff to bounce off my skin like rubber balls.
6. Sing Happy Birthday to J
7. Hover over Roo as he eats exactly 3 tiny bites of ice cream, continuously examining his legs and belly for first signs of a reaction, and completely ignoring Bean, who by this time has surely climbed into her own oversize bowl of mint chocolate chip and is swimming in the greeny goodness.
8. Leave party as quickly as possible to avoid the potential vomiting that's likely to occur after eating, allergies or not.
So, yeah, I think we'll sit this one out.
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 5, 2011
Praising Francesca and Chipotle
As you might imagine we rarely eat out as a family. Far too many restaurant meals have ended in a table full of vomit to fully enjoy the experience. Lately, however, the urge for some normalcy and let's be honest, a break from the kitchen, has been looming. Gladly, Roo's on an upswing at the moment and seems to be tolerating food unusually well. Time to capitalize on our good fortune, because who knows where we'll be after the next scope.
Saturday night on a whim we headed to one of our favorite and historically most child-friendly and allergy-accommodating restaurants, Francesca's Al Fiore, in Forest Park. Now despite the awesome pizza, this is no pizza joint. With white tablecloths, real napkins, great food, and a fully stocked wine cellar, it was almost like date night, plus three. As usual the staff was exceedingly patient and understanding about our plethora of questions regarding the ingredients and the waitress event went so far as to declare that we have most charming children. They were remarkably well behaved and quiet, almost like we do this all the time. Ranked among our top 3 meals out as a family. Ever. Hands down.
So today while Looly was on a field trip leaving the little ones and me to run errands, I was struck with a sudden surge of bravery. Lunch out. Just the three of us. While I realize that grabbing a quick lunch with the kiddos is commonplace for many families, we are not one of them. On top of the constant threat of anaphylaxis, have I mentioned that Roo vomits in restaurants? Take it from the lady who travels with an empty tupperware container and a dish towel in my purse, just in case.
Bring on Chipotle. Did you know that Chipotle is a completely peanut and tree nut-free establishment? I didn't until all too recently. No egg either. Their allergy information is super accessible and again, the staff was well-informed and incredibly accommodating. No grimaces or sighs as I asked my slew of questions. The lady even asked me if I'd like her to change gloves because I had asked about dairy cross-contamination. Fortunately, with Roo's dairy trial underway, he had plenty to choose from. Chips, guacamole, cheese quesadilla, rice, black beans, and more shredded cheese on top. Technically he could eat the chicken and carnitas too, but they were a little spicy for both kids. Now if that meal can't put some weight on him, I don't know what will. Of course, if we lose soy next week after the scope, we're totally screwed. But today is a good day.
This oughta sum it up...
Saturday night on a whim we headed to one of our favorite and historically most child-friendly and allergy-accommodating restaurants, Francesca's Al Fiore, in Forest Park. Now despite the awesome pizza, this is no pizza joint. With white tablecloths, real napkins, great food, and a fully stocked wine cellar, it was almost like date night, plus three. As usual the staff was exceedingly patient and understanding about our plethora of questions regarding the ingredients and the waitress event went so far as to declare that we have most charming children. They were remarkably well behaved and quiet, almost like we do this all the time. Ranked among our top 3 meals out as a family. Ever. Hands down.
So today while Looly was on a field trip leaving the little ones and me to run errands, I was struck with a sudden surge of bravery. Lunch out. Just the three of us. While I realize that grabbing a quick lunch with the kiddos is commonplace for many families, we are not one of them. On top of the constant threat of anaphylaxis, have I mentioned that Roo vomits in restaurants? Take it from the lady who travels with an empty tupperware container and a dish towel in my purse, just in case.
Bring on Chipotle. Did you know that Chipotle is a completely peanut and tree nut-free establishment? I didn't until all too recently. No egg either. Their allergy information is super accessible and again, the staff was well-informed and incredibly accommodating. No grimaces or sighs as I asked my slew of questions. The lady even asked me if I'd like her to change gloves because I had asked about dairy cross-contamination. Fortunately, with Roo's dairy trial underway, he had plenty to choose from. Chips, guacamole, cheese quesadilla, rice, black beans, and more shredded cheese on top. Technically he could eat the chicken and carnitas too, but they were a little spicy for both kids. Now if that meal can't put some weight on him, I don't know what will. Of course, if we lose soy next week after the scope, we're totally screwed. But today is a good day.
This oughta sum it up...
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.
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.
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!
Wednesday, March 10, 2010
Countdown to GI
Roo goes to the GI specialist this Friday. So much for our 6 week challenge. It seems we have failed miserably yet again. He has gained a measly eight ounces in the three months since his last endoscopy and boy did we work for it! We were doing so well there for a couple of weeks but as usual it's three steps forward, two steps (sometimes many more) back.
He is twenty pounds. Exactly twenty pounds. Did I mention he'll be two next week? All I'm hoping for now is a small, but acceptable, increase in height, since we've been accused of stunting his growth. Okay, maybe not "accused" persay, but I wish they'd stop bringing up his shortness as a concern. I mean, have they looked at Mufasa and me? And technically, he is on the chart for height. Nothing wrong with third percentile. Nothing at all. Besides, his pants look a little shorter, though they're gaping at the waist more than ever. Thank goodness for adjustable waistbands or he would be sporting a wardrobe full of dresses and tunics. At least they'd match Looly's sparkly shoes he loves so much.
In a final effort to plump him up an ounce or two before the big weigh-in I've been focusing on some old favorites this week. Pasta with turkey bolognese, rotisserie chicken drenched in dairy-free margarine, dairy-free mini-chocolate chips, heavily "buttered" rice, avocado in what else, olive oil dip, and strained raspberry coconut milk yogurt with scoops of soy formula stirred in. Anyone care to join us for dinner?
Chicken pot-pie earlier this week was a hit. As it turns out, Pillsbury ready-made pie crust is vegan and nut-free. Very exciting news in our house. I put it all on the line last night, however, with some citrus mahi mahi that was not well-received by anyone under age four. Tonight it's lamb tagine, but I will safely serve plenty of oily couscous and buttery broccoli on the side. In case of an emergency I have some meatballs at the ready in the freezer. Keep your fingers crossed. We have 45 hours and counting to give it our all and keep that dreaded feeding tube at bay. Chants, vibes, wishes, prayers - whatever you've got to encourage "no more vomit!" are greatly appreciated.
He is twenty pounds. Exactly twenty pounds. Did I mention he'll be two next week? All I'm hoping for now is a small, but acceptable, increase in height, since we've been accused of stunting his growth. Okay, maybe not "accused" persay, but I wish they'd stop bringing up his shortness as a concern. I mean, have they looked at Mufasa and me? And technically, he is on the chart for height. Nothing wrong with third percentile. Nothing at all. Besides, his pants look a little shorter, though they're gaping at the waist more than ever. Thank goodness for adjustable waistbands or he would be sporting a wardrobe full of dresses and tunics. At least they'd match Looly's sparkly shoes he loves so much.
In a final effort to plump him up an ounce or two before the big weigh-in I've been focusing on some old favorites this week. Pasta with turkey bolognese, rotisserie chicken drenched in dairy-free margarine, dairy-free mini-chocolate chips, heavily "buttered" rice, avocado in what else, olive oil dip, and strained raspberry coconut milk yogurt with scoops of soy formula stirred in. Anyone care to join us for dinner?
Chicken pot-pie earlier this week was a hit. As it turns out, Pillsbury ready-made pie crust is vegan and nut-free. Very exciting news in our house. I put it all on the line last night, however, with some citrus mahi mahi that was not well-received by anyone under age four. Tonight it's lamb tagine, but I will safely serve plenty of oily couscous and buttery broccoli on the side. In case of an emergency I have some meatballs at the ready in the freezer. Keep your fingers crossed. We have 45 hours and counting to give it our all and keep that dreaded feeding tube at bay. Chants, vibes, wishes, prayers - whatever you've got to encourage "no more vomit!" are greatly appreciated.
Thursday, March 4, 2010
Reflux too?
The somach flu, sloppy and violent as it was, went as quickly as it came, with Looly its lone victim. She was a trooper. Countless hours of PBS, snuggles from Nana and Grampy who were visiting, and a get well soon balloon surely sped along her recovery. I'm still trying to figure out how Bean didn't succomb, given the sheer number of times she reached her hands into Looly's stainless steel throw up bowl. Nice. While Roo struggles, her immune system is ironclad.
Thrilled as I am the Roo didn't get sick, I'm now on a quest to figure out why (why oh why!) he won't stop throwing up. He's off the suspected allergens (milk, eggs, nuts, beef) and the improvement was been dramatic in the past three months. He is more active, more comfortable, more enthusiastic about coming to the dining table and generally jollier than he ever was before. All good, right? His clean scope in November indicated that he was indeed on the mend. So why the heck won't he eat, keep his food down, and by all means, gain some weight?
He ate a great dinner Friday night, drank a super cup of fortified soy formula, got in his pajamas, brushed his teeth, read stories, threw up vast quantities of soy milk, hotdog, veggies, and rice for a few minutes, then was perfectly happy to get his pj's changed and head off to bed. Repeat the scene Sunday night with chicken, broccoli, and french fries. I am so frustrated. Is he still allergic to something or is it *just* gagging from the oral sensory delay?
Or is it reflux? He does not seem uncomfortable until the moment before he vomits. As I'm sure I've made abundantly clear, he does not love to eat, but he does not seem uncomfortable while he's eating anymore either. In general it's in the evening, after dinner, while drinking or soon after drinking and by some evil twist of fate, he's much more likely to vomit after a good meal than a poor one. Vomit. Everywhere. Then, he's off to get a towel to clean up after himself (breaking my heart), and happy to change his clothes, go play, take a bath, go to bed, or whatever else is planned. I know it's not a behavioral vomit. He's not doing it to avoid anything. Crying makes it worse - or more likely to happen. A runny nose is our worst enemy (after peanuts and eggs). I am so confused. And so tired. Ugh.
Thrilled as I am the Roo didn't get sick, I'm now on a quest to figure out why (why oh why!) he won't stop throwing up. He's off the suspected allergens (milk, eggs, nuts, beef) and the improvement was been dramatic in the past three months. He is more active, more comfortable, more enthusiastic about coming to the dining table and generally jollier than he ever was before. All good, right? His clean scope in November indicated that he was indeed on the mend. So why the heck won't he eat, keep his food down, and by all means, gain some weight?
He ate a great dinner Friday night, drank a super cup of fortified soy formula, got in his pajamas, brushed his teeth, read stories, threw up vast quantities of soy milk, hotdog, veggies, and rice for a few minutes, then was perfectly happy to get his pj's changed and head off to bed. Repeat the scene Sunday night with chicken, broccoli, and french fries. I am so frustrated. Is he still allergic to something or is it *just* gagging from the oral sensory delay?
Or is it reflux? He does not seem uncomfortable until the moment before he vomits. As I'm sure I've made abundantly clear, he does not love to eat, but he does not seem uncomfortable while he's eating anymore either. In general it's in the evening, after dinner, while drinking or soon after drinking and by some evil twist of fate, he's much more likely to vomit after a good meal than a poor one. Vomit. Everywhere. Then, he's off to get a towel to clean up after himself (breaking my heart), and happy to change his clothes, go play, take a bath, go to bed, or whatever else is planned. I know it's not a behavioral vomit. He's not doing it to avoid anything. Crying makes it worse - or more likely to happen. A runny nose is our worst enemy (after peanuts and eggs). I am so confused. And so tired. Ugh.
Thursday, February 18, 2010
Lucy's at Starbucks
Since my daily trek for coffee is absolutely required to avoid fits of foot-stomping, hair-pulling, and whining - all mine of course, my children are intimately familiar with Starbucks. They frequently flop a shopping bag over one arm and scamper toward the front door asking me for my coffee order in our version of play shopping. Looly whips up grande non-fat lattes and triple caramel machiattos on the pink plastic kitchen stove. Bean and Roo know no greater object with which to whither away fifteen blissful minutes in the stroller than a green plastic splash guard. Yeah, we're regulars.
As the kids have grown, they're no longer satisfied with Mom's coffee run being just for Mom. They've come on strong with ever-increasing demands of their own.
How can I resist such reasoning? And honestly, who am I to argue with my Starbucks Black Card in pocket and steaming cup in hand? So imagine my delight that Starbucks is now offering a selection of milk-, egg-, nut-, and gluten-free cookies! They're called Lucy's and they're not half bad. The cookies are a bit crisp, so Roo just sucks on his more than actually eating it. The real beauty is that now I can satisfy the girls with "Starbucks snacks" and not worry about who left theirs in the stroller, or who dropped crumbs that might migrate to Roo's mouth somehow. He can scavenge for bits and pieces all he likes and it's perfectly safe.
As the kids have grown, they're no longer satisfied with Mom's coffee run being just for Mom. They've come on strong with ever-increasing demands of their own.
Looly: "I want a vanilla milk."
me: "You just had milk."
Looly: "Can I get a scone?"
me: "Do you know what a scone is?"
Looly: "No."
me: "Why do you want one if you don't even know what it is?"
Looly: "I'm dying to find out!"
How can I resist such reasoning? And honestly, who am I to argue with my Starbucks Black Card in pocket and steaming cup in hand? So imagine my delight that Starbucks is now offering a selection of milk-, egg-, nut-, and gluten-free cookies! They're called Lucy's and they're not half bad. The cookies are a bit crisp, so Roo just sucks on his more than actually eating it. The real beauty is that now I can satisfy the girls with "Starbucks snacks" and not worry about who left theirs in the stroller, or who dropped crumbs that might migrate to Roo's mouth somehow. He can scavenge for bits and pieces all he likes and it's perfectly safe.
Monday, February 8, 2010
Menu Planning
Each week I plan our dinner menus. I've been doing this for years, since long before we had children. I have a much loved green binder full of magazine tear-outs and photo copies of hit recipes from the last ten years. My green binder is not getting much play these days. Who knew how central a role both cheese and nuts played in so many of my old favorites?
In my abandoned stash I have a great slow cooker recipe for Thai peanut pork stew. I make a mean feta and spinach tarte. And I'm dying to make this gorgeous, rich flourless chocolate cake for Valentine's Day but will save it for Mufasa's birthday instead. When it rolls around the first week in March I will pour seven ounces of molten dark chocolate over eight freshly cracked eggs, a splash of amaretto, and whip it into a frenzy without the tiniest bit of guilt that Roo can't have even a taste. We'll savor it once he's in bed and throw away the sponge when the dishes are done. Don't worry - the kiddos will get their turn with dairy and egg-free cupcakes a couple of weeks later for the twins' birthday.
These days the menu planning is about necessity rather than experimentation. Instead of my old green binder, I've been relying on my own ingenuity and a couple of decent cookbooks that address Roo's allergies. Unfortunately the cookbooks leave a little to be desired in terms of creativity. What's to Eat? and it's sequel, What Else Is to Eat? both by Linda Marienhoff Coss, provide quick, generally family friendly recipes that are completely milk, egg, and nut free. These have been helpful and were a great starting point when we first received Roo's diagnosis and I was facing the grocery store with much trepidation. The recipes are largely made up of what my Indian husband affectionately refers to as "white people food" - meatloaf, roasts, sauteed chicken breasts, homemade barbecue sauce, tuna salad, you get the idea.
Now that I'm starting to get more comfortable reading labels, substituting, etc. I'm getting a little bored and while they've been kind enough not to shout and pump their fists in protest, I imagine that everyone else in the family is too.
So, I'm hereby making a commitment to experiment more. I vow not to fear the dreary box of egg replacer that is lurking in the recesses of my pantry. I'm opening my heart and my oven to lamb in all its various forms. Rice cream sundaes? Why not? Hominy? Here I come. And really, who doesn't appreciate the sheer versatility of polenta?
Admittedly, this week's menu is rather bland, but will provide a glimpse of how I've stagnated at the moment. I hope to expand our family's taste repertoire over the next several months, while continuing to increase Roo's caloric intake without poisoning him. Yikes!
Here's the week in a nutshell:
Saturday: Chicken tacos were a huge hit. The kids loved all the colors (tomatoes, avocado, black olives, lettuce, chips, salsa, etc.) and everyone ate well, including Roo. Major success!
Sunday: I took a pass on cooking due to a Superbowl party and lots of snacks. The little ones ate leftover taco meat with corn and bread and butter when we got home. Pathetic, perhaps, but it is what it is.
Still to come...
Monday: Pork chops, brocolli, and hashbrown potatos
Tuesday: Leftover pork and tofu fried rice using Trader Joe's prepackaged vegetable fried rice (love it and it's vegan!!)
Wednesday: Lemon-dill halibut, brown rice, edamame
Thursday: Chicken breasts, corn and black beans, couscous
Friday: Date night! Kids will eat leftovers or chicken nuggets and fries, or some other equally deplorable (and easy) option.
Here's hoping for healthy appetites.
In my abandoned stash I have a great slow cooker recipe for Thai peanut pork stew. I make a mean feta and spinach tarte. And I'm dying to make this gorgeous, rich flourless chocolate cake for Valentine's Day but will save it for Mufasa's birthday instead. When it rolls around the first week in March I will pour seven ounces of molten dark chocolate over eight freshly cracked eggs, a splash of amaretto, and whip it into a frenzy without the tiniest bit of guilt that Roo can't have even a taste. We'll savor it once he's in bed and throw away the sponge when the dishes are done. Don't worry - the kiddos will get their turn with dairy and egg-free cupcakes a couple of weeks later for the twins' birthday.
These days the menu planning is about necessity rather than experimentation. Instead of my old green binder, I've been relying on my own ingenuity and a couple of decent cookbooks that address Roo's allergies. Unfortunately the cookbooks leave a little to be desired in terms of creativity. What's to Eat? and it's sequel, What Else Is to Eat? both by Linda Marienhoff Coss, provide quick, generally family friendly recipes that are completely milk, egg, and nut free. These have been helpful and were a great starting point when we first received Roo's diagnosis and I was facing the grocery store with much trepidation. The recipes are largely made up of what my Indian husband affectionately refers to as "white people food" - meatloaf, roasts, sauteed chicken breasts, homemade barbecue sauce, tuna salad, you get the idea.
Now that I'm starting to get more comfortable reading labels, substituting, etc. I'm getting a little bored and while they've been kind enough not to shout and pump their fists in protest, I imagine that everyone else in the family is too.
So, I'm hereby making a commitment to experiment more. I vow not to fear the dreary box of egg replacer that is lurking in the recesses of my pantry. I'm opening my heart and my oven to lamb in all its various forms. Rice cream sundaes? Why not? Hominy? Here I come. And really, who doesn't appreciate the sheer versatility of polenta?
Admittedly, this week's menu is rather bland, but will provide a glimpse of how I've stagnated at the moment. I hope to expand our family's taste repertoire over the next several months, while continuing to increase Roo's caloric intake without poisoning him. Yikes!
Here's the week in a nutshell:
Saturday: Chicken tacos were a huge hit. The kids loved all the colors (tomatoes, avocado, black olives, lettuce, chips, salsa, etc.) and everyone ate well, including Roo. Major success!
Sunday: I took a pass on cooking due to a Superbowl party and lots of snacks. The little ones ate leftover taco meat with corn and bread and butter when we got home. Pathetic, perhaps, but it is what it is.
Still to come...
Monday: Pork chops, brocolli, and hashbrown potatos
Tuesday: Leftover pork and tofu fried rice using Trader Joe's prepackaged vegetable fried rice (love it and it's vegan!!)
Wednesday: Lemon-dill halibut, brown rice, edamame
Thursday: Chicken breasts, corn and black beans, couscous
Friday: Date night! Kids will eat leftovers or chicken nuggets and fries, or some other equally deplorable (and easy) option.
Here's hoping for healthy appetites.
Monday, January 25, 2010
Feeding Frenzy
I used to love to cook but this whole thing is wearing on me.
My husband, Mufasa, is sneaking cold cheese curds at the kitchen counter and my 3-year-old daughter is in tears over a denied request for a peanut butter sandwich. The fact that it's almost dinner time has nothing to do with it. My 22-month-old son, Roo, has severe food allergies. No peanut butter for Roo. No cheese curds either.
After nine excruciating months of unexplained food aversion, weight loss, vomiting, and frantic night-waking, Roo was diagnosed with Eosinophilic Esophagitis (EoE). Simply put, EoE is an allergy that causes inflammation in the esophagus to the point that food can become lodged there. The worst part is that my baby suffered silently for months, always hungry, yet unable to eat due to the burning in his tiny throbbing chest. The good news is that now that we know, we're dealing with it.
Roo's EoE is food-based. He follows a strict elimination diet including no traces of dairy, eggs, nuts, or beef. Thankfully the diet seems to be working and we are thrilled that he hasn't needed more invasive measures such as tube-feeding. Still, the impact his diet has had on his appetite and our family in general is tremendous.
No more peanut butter sandwiches for my preschooler, no weekend breakfasts out at our favorite dive, no macaroni and cheese, no more “real” cheese at all. This last bit is particularly difficult for my husband who is pre-diabetic and until recently, considered cheese the mainstay of his diet.
As the daughter of a chef and a restaurateur, these concepts are completely foreign to me. I like to cook. I love to bake. I live to eat. My own childhood was spent napping under the candy counter at our family's pizza shop, baking peanut butter cookies with my mother, and sticking my fingers into all sorts of mysterious and no doubt egg-laden sauces.
Through both of my pregnancies I worried about all sorts of nightmarish scenarios, some completely rational, others not so much. I lost sleep over the prospect of scalding bath water. I had visions of inadvertently poking a sharp object through the soft spot on the top of my newborn's head. I feared my own borderline childhood obesity would manifest in my children. I suspected each smiling store clerk of being a knife-wielding maniac who cut babies out of pregnant abdomens. You get the idea. Never once did I fear that I wouldn't be able to nourish my children. I had trained my whole life for this. I couldn't wait to nurse and eventually to make my own organic baby food.
I have cabinets bursting with cookbooks featuring luscious frittatas, creamy stews, and cakes iced slicker than seal skin. Food is my gig. I never dreamed that I would struggle to provide healthy, delicious, satiating meals to my entire family and the fact that often I cannot is crushing. I pour over allergy-free and diabetic-friendly cookbooks looking for that one allowable, nourishing, crowd-pleasing meal. Thanks to frequent substitutions and specialty grocery stores, I'm getting better and learning as I go. For now, however, I assure you I have the best fed garbage can on the block.
My husband, Mufasa, is sneaking cold cheese curds at the kitchen counter and my 3-year-old daughter is in tears over a denied request for a peanut butter sandwich. The fact that it's almost dinner time has nothing to do with it. My 22-month-old son, Roo, has severe food allergies. No peanut butter for Roo. No cheese curds either.
After nine excruciating months of unexplained food aversion, weight loss, vomiting, and frantic night-waking, Roo was diagnosed with Eosinophilic Esophagitis (EoE). Simply put, EoE is an allergy that causes inflammation in the esophagus to the point that food can become lodged there. The worst part is that my baby suffered silently for months, always hungry, yet unable to eat due to the burning in his tiny throbbing chest. The good news is that now that we know, we're dealing with it.
Roo's EoE is food-based. He follows a strict elimination diet including no traces of dairy, eggs, nuts, or beef. Thankfully the diet seems to be working and we are thrilled that he hasn't needed more invasive measures such as tube-feeding. Still, the impact his diet has had on his appetite and our family in general is tremendous.
No more peanut butter sandwiches for my preschooler, no weekend breakfasts out at our favorite dive, no macaroni and cheese, no more “real” cheese at all. This last bit is particularly difficult for my husband who is pre-diabetic and until recently, considered cheese the mainstay of his diet.
As the daughter of a chef and a restaurateur, these concepts are completely foreign to me. I like to cook. I love to bake. I live to eat. My own childhood was spent napping under the candy counter at our family's pizza shop, baking peanut butter cookies with my mother, and sticking my fingers into all sorts of mysterious and no doubt egg-laden sauces.
Through both of my pregnancies I worried about all sorts of nightmarish scenarios, some completely rational, others not so much. I lost sleep over the prospect of scalding bath water. I had visions of inadvertently poking a sharp object through the soft spot on the top of my newborn's head. I feared my own borderline childhood obesity would manifest in my children. I suspected each smiling store clerk of being a knife-wielding maniac who cut babies out of pregnant abdomens. You get the idea. Never once did I fear that I wouldn't be able to nourish my children. I had trained my whole life for this. I couldn't wait to nurse and eventually to make my own organic baby food.
I have cabinets bursting with cookbooks featuring luscious frittatas, creamy stews, and cakes iced slicker than seal skin. Food is my gig. I never dreamed that I would struggle to provide healthy, delicious, satiating meals to my entire family and the fact that often I cannot is crushing. I pour over allergy-free and diabetic-friendly cookbooks looking for that one allowable, nourishing, crowd-pleasing meal. Thanks to frequent substitutions and specialty grocery stores, I'm getting better and learning as I go. For now, however, I assure you I have the best fed garbage can on the block.
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