No, unfortunately this isn't a recipe for pies. It's all about FPIES. Here's the story:
Siena has been doing so well over the past year, but after a couple of encounters with allergens, I decided it was time to get some more questions answered. We were originally told she should grow out of her allergies by a year of age. Since that hasn't happened, I wanted to check in and see what to expect in the future and how they recommend to go about challenging allergenic foods.
We were finally referred to a pediatric allergist in Seattle, and we had our appointment on Wednesday. He asked us the usual questions and proceeded to do another back scratch test on Siena, which is nice in spite of the pricks because it answers so many questions so quickly (you know, without the three-week cramping and diarrhea multiplied by the number of foods tested). Lo and behold, the allergy tests all came out negative! But Siena is still in the middle of the Las Vegas salad reaction and has definitely not grown out of her problem. HOW COULD THIS BE?
It turns out that Siena does not have, nor did she ever have, allergies. We came home with a brand new diagnosis: FPIES, or food protein-induced enterocolitis syndnrome. FPIES mimics allergies, but the actual immune reaction involved different players and is therefore a completely different disease. FPIES is more serious than allergic colitis and is characterized by profuse diarrhea and vomiting hours after ingestion. Fluid loss can lead to lethargy and shock, which must be treated in the ER. Food challenges, according to many reputable websites, should be done in the hospital in case of a serious reaction. The most common problem foods, as with allergies, are dairy and soy, but include others like grains and legumes. This explains Siena's problems with rice and lentils, which are not common allergens. The good news is that most children outgrow it by age 3, or even, according to my doctor, by 18 months. Siena is now 19 months. So we could be seeing this improve anytime.
We were sent home with instructions to challenge her problem foods at home, starting with the foods that are least likely to cause a problem. Assignment #1: once Siena is over her current salad reaction, give her 1/4 serving of wheat. If no reaction occurs, wait two days and try 1/2 serving. If no reaction occurs, wait two days and try 1 serving. If no reaction occurs, move on to Assignment #2, which is eggs. I'm a little nervous to try it, especially after reading all the ER stories, but her reactions have never been that severe in the past. Hopefully it goes smoothly, and if it doesn't we will know what is happening and what to do, and we will have more answers and information for her follow-up allergist appointment. Unfortunately there is no FPIES test besides just trying the foods. Those three-week sick periods are required if we want answers and if she is still reacting. :(
I'm pretty blown away by this whole change in plans. Two days later it's starting to sink in. While it's scary to read about serious reactions requiring emergency room visits and hospital food challenges, it's good to know kids grow out of it. I found an FPIES facebook group, and while it seems that kids usually haven't grown out of it by 18 months or even necessarily 3 years, it does happen and kids grow up to be healthy adults. I was braced for a similar duration for food allergies, so I guess the plan remains about the same.
As for this blog, I have decided it makes sense to continue. FPIES mimics allergies so closely that we operated very successful under the allergies model for a year and a half. Also, even if we had the correct FPIES diagnosis in the first place, our course of action would have been the same. So here I am. Now an FPIES mom, but still eating allergy free (or... um... FPIES free??), and still writing about it.
Friday, May 7, 2010
Sunday, May 2, 2010
Allergy Free in Vegas (with a toddler)
My family has been anticipating the end of my husband's contract as a great time for a little vacation. We had been deliberating for months on where to go: far enough away we felt like we were on a "real" vacation, but close enough we weren't too intimidated traveling with a toddler. When the week for our vacation was suddenly moved way up, we chose Vegas on the spur of the moment. It's a familiar place we've seen several times, we knew there were good restaurants, and we had some ideas for fun activities with Siena.
WOW is Vegas ever different with a toddler! We stayed four nights, thinking that would allow for a slower-paced trip, but what we didn't realize is that we would spend our time playing at telephone booths, and stairs and escalators, rather than exploring what Vegas has to offer. When we thought we were ready to go down the strip, Siena was either too active or too fussy to make it worthwhile, and we wanted to be back in our hotel room for her nap. It was fun, but a very different kind of fun.
Actual highlights included waving at the gondoliers in the Grand Canal in the Venetian, where we stayed. The dolphins and white tigers at the Mirage were a big hit with Siena; she enjoyed watching them, learning about them, and imitating them. And although we were there during a big wind storm, the weather cooperated enough for two trips to the pool. The Venetian has a perfect pool for toddlers-- just 1'2" deep. Siena loves the water and had the time of her life in this pool.
We managed to stay mostly allergy free for the whole trip. I say "mostly" because Siena had trouble sleeping one night, and I could hear her tummy rumbling. She was clingy, gassy, and fussy, but at least it never turned into the full-fledged diarrhea and diaper rash, thank goodness! We ran into trouble only when we tried the money-saving route and ate at the cafeterias, where the employees don't have a thorough knowledge of the ingredients in their ingredients and don't totally understand the allergy-related questions anyway.
The Venetian was a great place to stay for allergy-free cuisine. We didn't make it very far from the Venetian this trip, but if you're in Vegas, here are some places to try that can accommodate you with great food and great service as well!
The Venetian:
Enoteca by Mario Batali: An Italian restaurant that even offers gluten-free pasta! I recommend the vegetables as a great appetizer. They're served in ramekins and go a long way for the money.
Cocolini: The gelato stand that serves a surprising variety of sorbets as well. Choose from just about any fruit flavor you can think of. This was a big hit with Siena and me and we stopped here frequently.
Treasure Island:
Isla: This is the *only* Mexican restaurant I've been able to enjoy since going allergy free, and what a treat! It's mid-range on the price scale, so you can get an appetizer for a later snack without breaking the bank. It's also a tequila bar, so go ahead and indulge in a margarita as well.
Mirage:
Samba Brazilian Steakhouse: Featuring an all-you-can-eat variety of Brazilian-style barbecued meats served tableside, you leave this place feeling satisfied. Not only was it delicious, but fun as well. They also offer a range of entrees, and all orders are served with salad and vegetables.
Ceasars Palace:
Trevi: Located by the Trevi Fountain in the Forum Shops, we ate lunch here one day. A nice atmosphere and good Italian food.
*The places that work for eating allergy free cook food to order from whole ingredients. These tend to be more expensive and less kid-friendly than most other options. To save your pocketbook and your sanity if dining with a toddler, have some options handy. Even if you plan on dining out at every meal, you want snacks on hand so you're not all starving during the search for an accepible restaurant. Bring fruits and some canned vegetables-- carrots and green beans are Siena's favorite. I baked some muffins for breakfasts, packed in a tupperware, and brought oatmeal and soup that only required hot water.
We had a nice family vacation and a good learning experience! Only on the last day did we finally feel like we had mastered doing Vegas with a toddler. There's plenty more to see, such as the birds in Flamingo and the shark exhibit at Mandalay Bay, all options for next time.
WOW is Vegas ever different with a toddler! We stayed four nights, thinking that would allow for a slower-paced trip, but what we didn't realize is that we would spend our time playing at telephone booths, and stairs and escalators, rather than exploring what Vegas has to offer. When we thought we were ready to go down the strip, Siena was either too active or too fussy to make it worthwhile, and we wanted to be back in our hotel room for her nap. It was fun, but a very different kind of fun.
Actual highlights included waving at the gondoliers in the Grand Canal in the Venetian, where we stayed. The dolphins and white tigers at the Mirage were a big hit with Siena; she enjoyed watching them, learning about them, and imitating them. And although we were there during a big wind storm, the weather cooperated enough for two trips to the pool. The Venetian has a perfect pool for toddlers-- just 1'2" deep. Siena loves the water and had the time of her life in this pool.
We managed to stay mostly allergy free for the whole trip. I say "mostly" because Siena had trouble sleeping one night, and I could hear her tummy rumbling. She was clingy, gassy, and fussy, but at least it never turned into the full-fledged diarrhea and diaper rash, thank goodness! We ran into trouble only when we tried the money-saving route and ate at the cafeterias, where the employees don't have a thorough knowledge of the ingredients in their ingredients and don't totally understand the allergy-related questions anyway.
The Venetian was a great place to stay for allergy-free cuisine. We didn't make it very far from the Venetian this trip, but if you're in Vegas, here are some places to try that can accommodate you with great food and great service as well!
The Venetian:
Enoteca by Mario Batali: An Italian restaurant that even offers gluten-free pasta! I recommend the vegetables as a great appetizer. They're served in ramekins and go a long way for the money.
Cocolini: The gelato stand that serves a surprising variety of sorbets as well. Choose from just about any fruit flavor you can think of. This was a big hit with Siena and me and we stopped here frequently.
Treasure Island:
Isla: This is the *only* Mexican restaurant I've been able to enjoy since going allergy free, and what a treat! It's mid-range on the price scale, so you can get an appetizer for a later snack without breaking the bank. It's also a tequila bar, so go ahead and indulge in a margarita as well.
Mirage:
Samba Brazilian Steakhouse: Featuring an all-you-can-eat variety of Brazilian-style barbecued meats served tableside, you leave this place feeling satisfied. Not only was it delicious, but fun as well. They also offer a range of entrees, and all orders are served with salad and vegetables.
Ceasars Palace:
Trevi: Located by the Trevi Fountain in the Forum Shops, we ate lunch here one day. A nice atmosphere and good Italian food.
*The places that work for eating allergy free cook food to order from whole ingredients. These tend to be more expensive and less kid-friendly than most other options. To save your pocketbook and your sanity if dining with a toddler, have some options handy. Even if you plan on dining out at every meal, you want snacks on hand so you're not all starving during the search for an accepible restaurant. Bring fruits and some canned vegetables-- carrots and green beans are Siena's favorite. I baked some muffins for breakfasts, packed in a tupperware, and brought oatmeal and soup that only required hot water.
We had a nice family vacation and a good learning experience! Only on the last day did we finally feel like we had mastered doing Vegas with a toddler. There's plenty more to see, such as the birds in Flamingo and the shark exhibit at Mandalay Bay, all options for next time.
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