how to handle eating out multi-allegies - unexpected, fast food, etc? - Mothering Forums
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#1 of 37 Old 01-29-2010, 03:17 PM - Thread Starter
 
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This is partially a rant, but I am also looking for suggestions!

For the most part, we don't eat out.

Before our last round of allergy testing, we were avoiding dairy, peanuts, and tree nuts.

We knew for example that we couldn't have McDonalds fries (they have dairy) or Wendy's fries (shared fryer), but Burger King was ok (although we did occasionally find onion rings in our fries and the onion rings are not safe!). The burgers and buns were safe. Also, subway bread and a number of meats were safe, plus I could watch them and make sure they used fresh gloves, cleaned the knife, etc.

We don't eat fast food regularly, but there are times like if I take my car to Sears for any work, I could spend time walking the mall with the kids and eat at the mall. Sometimes you don't expect it to take 4 hours for your car. I can't drop it off and come back as I don't have a way to transport the kids without my car. And sometimes you aren't even expecting to have to take your car in. Sometimes if you have scheduled obligations and things like unexpected snowy road conditions mean that you don't have time to go home and make dinner or even sandwiches but you can pick up fast food and bring it with you. When we visit my family, they rarely offer us food, and even if they did, it may or may not be safe. Usually we bring stuff for our first meal there and cook it at my parents house. Usually it is lunch and I bring a box of pasta, some veggies and some fruit, and supplement with food from my mom's freezer. The last 2 times it was chicken patties (that won't work now because we have to add soy to the list). Then we visit people in the afternoon. Then pickup Burger King for dinner. We have the fruit throughout the day. But then if we are there for the next day we have to either got to a sit-down restaurant, or fast food for lunch and/or dinner. The hotel we stay at has a continental breakfast. dd1 loves the waffles and sometimes a bagel. I don't dare give them to dd2. So she has some boxed cereal with no milk and fruit if they have something she wants.

If we went to a sit down restaurant I would either contact them first to get a safe list (like Red Robin), talk to the manager (Friendly's) or similar. We only ate out a couple of times like that. It was really stressful and the safe items were very few. So normally we don't eat out or we do Burger King or Subway.

We like to spend the day at the Children's museum and eat lunch there. There choices are Taco Bell, Subway, Pizza Hut, Bill Gray's, and an ice cream/snack bar type place. I would let dd1 get what she wanted usually a pizza, and dd2 and I would split a sub.

So we managed. It wasn't great, but doable.

So then we find out dd2 is allergic to soy.

Burger King burgers are no longer safe and who knows what kind of oil they fry the fries in - probably soybean oil.
Subway is also no longer safe. The breads have soybean oil as does even the turkey meat.
I've looked at some of the lists from the restaurants (like Red Robin). There is almost nothing left.

I've looked at the websites for BK, McD's, Subway, and Wendy's. All of them have a few hit and miss items that are probably safe. But either they are things I have no interest in, or I would have to stop at 2-3 places to make a meal. I don't see how we can spend the day at the Children's Museum anymore since there isn't anything safe to eat for lunch (or dinner, sometimes we do afternoon/evening instead of morning/afternoon).

So, we haven't been to the Children's Museum in a few months. I practically starved myself last time we visited my family and dd2 lived off of snacks and fruit. We did make lunch at my mom's (with the chicken patties that did not say they contained soy, but probably contained soybean oil hidden as "vegetable oil"). We were late because of road conditions to my dd1's class, so I went home (in 10 minutes), and dd1 had cereal and milk for dinner while I made a sandwich to take with us for dd2 and I skipped dinner altogether. Sure would have been nice to pick up BK or something and not been so rushed and late for the class anyways because we really did not have time to drive home! One of the other mom's there was also running late because of the weather. She said, that they just went to Wendy's. Must be nice! We can't go anywhere.

Wednesday, I had an activity at dd2's school - no siblings. So dd1 went to my SIL's house. When she was begging me for a cheeseburger, I actually couldn't tell her no. I got her one and let her take it to SIL's house even though she already ate dinner at home. This way she could have it when dd2 was not around her to see her eat it and be tortured because she couldn't have something too. But of course dd2 was in the car when I went through the drive-thru. So she was throwing a fit that she wanted a hamburger. She is so smart, at 2, she knows she can't have a cheeseburger because she is allergic to dairy so she asked for a hamburger! But I couldn't get her one.

Yes, I do ALWAYS bring safe snacks with us when we go places. But snacks don't cut it for a meal. I supposed I could pack a cooler and leave it in the car when we go to the Children's Museum. I can't carry it around the museum, so I would have to leave it in the car. Then I would have to bundle my kids up in coats and everything just to go get the cooler when it was time to eat. Not fun. I can't see doing that. And I know part of the fun for them was the fact that they were getting to eat out.

What do I do if we unexpectedly have to be out over lunch or dinner time? If it is unexpected, then I obviously wouldn't have packed sandwiches or anything. Do I feed dd1 and make dd2 just watch and starve? Do I make my kids both starve because of one child's allergies? How can I still give my kids that fun treat of going out with mommy when things just aren't safe anymore? When we went to Friendly's it was such a great bonding time. Now I can't do that with them anymore?

What can I feed my kids when we are out of town or on vacation, or traveling through an airport, on the go where I can't bring lunch and dinner with us?

Isn't there any fast food and other restaurants that are safe for dairy, soy, tree nut and peanut allergic people? Are we relegated to either starve or eat at home?
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#2 of 37 Old 01-29-2010, 03:25 PM
 
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I always pack a lunch. Always.

The soy allergy is the most limiting allergy because it's in everything at fast food joints. They may not list it because they don't consider soybean oil or lecithin to be allergenic and it's true, many folks with a soy allergy can tolerate those things. I cannot.

The only chain where I could sometimes eat quickly was Baja Fresh, but that was before the tomato allergy showed up.

I bought a laptop lunch for DS. We pack our lunch (soy free, gluten-free, egg-free, mango-free, tomato-free, carrot-free, peanut-free, etc) and head out.

For long days I do, in fact, pack a cooler.

For emergencies, I find a grocery store and buy safe lunchmeat (has to be nitrate/nitrite-free, pork-free, soy-free, gluten-free) and some cheese (we can do dairy). And maybe some dried fruit or applesauce.

Chasing DS since April 2007 and pumping for DD March 2013.

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#3 of 37 Old 01-29-2010, 03:29 PM
 
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We have a bigger list than yours (gluten, dairy, soy, corn, almonds, etc.) and we can still eat at Red Robin. My DS gets a hamburger patty with something on the side (I think there were a couple of options, maybe carrot sticks or cantaloupe). I got the hamburger patty with avocado and bacon, with cantaloupe on the side (YUM!). DD2 got chicken breast I think (since she can't have beef) with cantaloupe on the side. They were very good about allergies, with the manager coming over to check on things.

Outback has also been very good for us with allergies. Again, hamburger patty for DS, with steamed broccoli on the side. Chicken breast for DD2, with baked sweet potato on the side.

Friendlys, BK, McDs, have absolutely nothing we can eat.

When we were stuck at a mall over Christmas break and I hadn't brought lunch, DD1 got whatever she wanted (lucky her), DD2 got steamed rice from a Chinese restaurant and a fruit cup from another restaurant. I got steamed rice as well, and what I shouldn't have gotten which was steamed veggies, but they were on the same cooking surface as all the soy. We can usually find a baked potato places. D'Angelos used to have safe bread before we went gluten free, and their steak/mushroom/pepper (I think it was #9 sandwich) was safe. You learn to adapt. I always make sure there's stuff in my car (a package of rice cakes, a bag of safe potato chips, etc.) and almost always have something in my purse. When we go to my in-laws for dinner, I bring our food or bring whatever is necessary to complete the meal, usually in a cooler. When we go to a hotel, we get the efficiency so I can cook.

Sure, it's a pain, but that's what we do.

Kathy, mother of 3, wife of 1. My new recipe blog: www.kathysrecipebox.wordpress.com (no longer searchable by allergen, but at least it doesn't have a virus!)
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#4 of 37 Old 01-29-2010, 03:30 PM
 
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Are there options for DD2 that would work as a meal that you could try to always have on hand? ODD is on a TED and has been for almost 2 months, and she only has 7 "safe" foods ~ we've figured out things that she can eat when we go out. Usually if we know we're going out for dinner we'll pack her a turkey burger, rice crackers, pears and maybe some carrots. I try to *always* have rice cakes, pears (the little cups of diced pears work well because they travel and are easy to eat), and sometimes sweet potato chips. In a pinch that will work for lunch, and then I feed her a protein rich snack at home. Currently we don't have any protein options for her that would work well to always be in the car. If you have a bag in your car that is full of some substantial snacks that could work.

It's hard when your kids have allergies, because we are so focused on food as a part of our culture, but you gotta do what you gotta do :P ODD knows that she can't eat what mommy and daddy are eating, and that is fine with her. If you make it not a big deal and are consistent with the reason she can't have things, then hopefully she will be ok with it.

Sarah, loving wife to Michael (9/6/03), SAHM to my big girl Maya "Monkey" Grace (10/5/07) and my baby girl Charlotte "Bugsy" Mae (7/2/09) : :
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#5 of 37 Old 01-29-2010, 03:30 PM - Thread Starter
 
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another example, I always pack my lunch for work.

One day I forgot my lunch. In the past, it was not a huge deal. I'd pick up a whopper Jr and fries ($2, each of the $ menu), or a sub, or something in the cafeteria. Now I can't have the burgers at BK, or the sub.

What I did: stopped at our local natural foods store and picked up a box of crackers. at the Cafeteria, picked up a burger, no bun, with lettuce and tomato. Did the burger have soy? I have no idea, neither did they employee.
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#6 of 37 Old 01-29-2010, 03:40 PM - Thread Starter
 
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also, I'm not sure where y'all live, but we don't have a huge number of choices here, so some of the places mentioned I've never heard of or we don't have here.

Red Robin is fairly new. They were good to us. But it was a real headache cross referencing each list to find what was safe on each of the lists. Some items were safe for 1 allergy, but not another. I also felt like I was a pain because I asked a million questions. The unseasoned fries they told me were fried in a dedicated fryer. So we had those. but now, I would need to know if they are fried in soybean oil.

Friendly's was fantastic for us, and I may try them again. The Manager prepares the food when there is an allergy. Food is grilled on top of aluminum foil so it does not touch the grill. I had a plain grilled chicken breast with mayo on the side. Of course, I can't do Mayo now. I can't remember what side I had, but dd2 had mandarin oranges. Also she had them for desert when dd1 had ice cream. Even as good as they were to us, there is still always worry. I have to be vigilant to make sure dd1 does not get ice cream on dd2. I make sure dd1 does not touch napkins or wet wipes used by dd1. I use a we wipe on my own hands after helping dd1 before I touch my food or dd1's food or anything else.
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#7 of 37 Old 01-29-2010, 03:43 PM - Thread Starter
 
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Originally Posted by jocelyndale View Post
I always pack a lunch. Always.

The soy allergy is the most limiting allergy because it's in everything at fast food joints. They may not list it because they don't consider soybean oil or lecithin to be allergenic and it's true, many folks with a soy allergy can tolerate those things. I cannot.

The only chain where I could sometimes eat quickly was Baja Fresh, but that was before the tomato allergy showed up.

I bought a laptop lunch for DS. We pack our lunch (soy free, gluten-free, egg-free, mango-free, tomato-free, carrot-free, peanut-free, etc) and head out.

For long days I do, in fact, pack a cooler.

For emergencies, I find a grocery store and buy safe lunchmeat (has to be nitrate/nitrite-free, pork-free, soy-free, gluten-free) and some cheese (we can do dairy). And maybe some dried fruit or applesauce.
I have packed lunches for dd1 when going to birthday parties and such. But not if we are not planning to be out at lunch time.

We don't have a Baja Fresh here. Sound like it would be a good place to check out.

Also, I guess I should also add Mango to our list. It was not tested, but with the cashew allergy, our allergist said we should avoid it. I had him write it on the action plan for school too.
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#8 of 37 Old 01-29-2010, 03:53 PM
 
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We live in a small area that has plenty of restaurants, tho no chains aside from fast food. DD cannot eat at any of them for fear of xcon issues. We don't eat out. When we do go out of town, there are more options, but they are expensive (for us). We bring things from home and hit Trader Joes or some such place and stock up. I even bring my own pans when visiting family and friends. It's a pain, but it gets more manageable as you get used to it.
I've opted out of family reunions, ect when I felt unable to handle to the stress of preparing every meal from scratch on an outdoor cook site for 3 days. I could probably manage it fine now, but it's okay to opt out of things if it pushes you over the edge thinking about it.
It's really not too hard, it just takes a bit more planning and preparation! If I can do it, believe me, anyone can!

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#9 of 37 Old 01-29-2010, 03:54 PM
 
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I hear you. We were only avoiding tree nuts and peanuts for ds, but then he developed a soy allergy -- and that's when eating out ended for us. You are right when you question the prevalence of soy in restaurant food -- it's really unavoidable unless you are getting a veggie salad w/o dressing or a fruit platter. (There are restaurants that we can go and spend $$$$ and avoid soy, but that's not what you are talking about, and not places that we are going to go on even a semi-regular basis.)

I arrange to be out when it doesn't fall over a meal, unless I can pack a meal. For example, you could pack a small lunch and carry it in a backpack when you go to the museum and get drinks there. Both of my dc's have small backpacks, and I've had them carry those on occasion. We use small ice packs to keep things cold. I do car maintenance on the weekend, or when my dh can help. When we fly, we need to stay overnight in a hotel before boarding the following morning and travel all day to get to our destination. It's a pain, I know, but we carry our food. All meals. And even though ds is the ONLY one in our family with severe food allergies, we all eat what he does. That may change when he gets older, but right now he needs our family support when we do family events so that he doesn't completely feel like an outsider or an inconvenience. And it IS a huge inconvenience, but I would never, ever want ds to feel that way -- so I suck it up and pretend that I like making picnics on the days when I feel grumpy about what could be, but isn't.

And in some weird way, I've started to be thankful that this is our predicament to avoid soy, as strange as it seems because we actually eat better than if we were allowed to eat fast food on occasion.

Laura - Mom to ds (10) and dd (7) "Time stands still best in moments that look suspiciously like ordinary life." Brian Andreas.

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#10 of 37 Old 01-29-2010, 04:02 PM
 
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I'm watching this thread because we are about to go on a big family vacation in a strange city--a huge deal for us, we never take vacations.

Dd2 was recently tested for IgG food sensitivities and came back with 39 highly sensitive items plus 4 moderately sensitive. Dp is still nursing her & is avoiding all the same items. They include all the top 8-10 allergens plus all legumes, many other nuts, many fruits and rice.

We will be staying with friends and packing some food & shopping once we get there, and I know we will pack a lot of food with us, but I'm expecting this to be extremely challenging, as we will often be out for a whole day over lunch & dinner and while dd2 is still a toddler & can be satisfied with snacks, poor dp gets hungry! But other than just eating plain chicken, I'm not really thinking there will be basically anything else they can eat. Sigh.

ETA: Of course we are not in nearly as challenging a situation as you, since we are only dealing with sensitivities that cause sleep, skin and behaviour challenges, and nothing life threatening! I can't imagine how difficult that must be! Big (((((hug))))) to you...it sounds stressful!
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#11 of 37 Old 01-29-2010, 04:08 PM - Thread Starter
 
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We have a bigger list than yours (gluten, dairy, soy, corn, almonds, etc.)
Kathy, I know for sure there are people with a longer list than us. And I always feel guilty when I complain because I DO know that there are people more restricted! I also look to you (people who have alot of restrictions and have learned how to live with it) for suggestions so I too can learn to live better with it.

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and we can still eat at Red Robin. My DS gets a hamburger patty with something on the side (I think there were a couple of options, maybe carrot sticks or cantaloupe). I got the hamburger patty with avocado and bacon, with cantaloupe on the side (YUM!). DD2 got chicken breast I think (since she can't have beef) with cantaloupe on the side. They were very good about allergies, with the manager coming over to check on things.
Yes, I do remember my kids getting the cantaloupe. The good thing is that dd2 at least has a lot of things she likes, so we usually can find something she likes, it is just making sure it is safe! I think I too had a hamburger with bacon (but it was on a bun).

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Outback has also been very good for us with allergies. Again, hamburger patty for DS, with steamed broccoli on the side. Chicken breast for DD2, with baked sweet potato on the side.
We have not yet tried Outback since we found out about the allergies. I thought I remember looking at their website and seeing that they were not very forthcoming regarding allergens. Has that changed or did I just miss the information? The only thing I saw was that if you had a dairy allergy, you should request a clean pan with no butter when they make your steak. How did you know what was safe? I've also been told that a lot of restaurants put butter on the outside of potatoes before baking them, so I've been afraid to get baked potatoes.


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Friendlys, BK, McDs, have absolutely nothing we can eat.
At Friendly's, I had a grilled chicken breast. It was not something on the menu. But they made it for me anyways.

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When we were stuck at a mall over Christmas break and I hadn't brought lunch, DD1 got whatever she wanted (lucky her), DD2 got steamed rice from a Chinese restaurant and a fruit cup from another restaurant. I got steamed rice as well, and what I shouldn't have gotten which was steamed veggies, but they were on the same cooking surface as all the soy.
is steamed rice at a Chinese restaurant usually safe from soy (cross contamination)? I was assuming with a soy allergy, that nothing from a Chinese restaurant would likely be safe due to cross contamination.

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We can usually find a baked potato places. D'Angelos used to have safe bread before we went gluten free, and their steak/mushroom/pepper (I think it was #9 sandwich) was safe.
I don't think our malls have any baked potato places and there is no D'Angelos here. Did they have breads with no soybean oil? That is our problem with Subway and other sub places now. The breads and some meats have soybean oil. I do give kudos for Subway for disclosing that, as most companies don't and it is not required by law, as the oil is not necessarily recognized as an allergen.

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You learn to adapt. I always make sure there's stuff in my car (a package of rice cakes, a bag of safe potato chips, etc.) and almost always have something in my purse. When we go to my in-laws for dinner, I bring our food or bring whatever is necessary to complete the meal, usually in a cooler.
Yes, I agree. I will learn to adapt. I have to. I didn't think about keeping a stash of snacks in the car. Usually just what I bring in our bag. My dd has been potty trained for a few months. I usually still carry a "diaper bag" so that I have an extra change of clothes just in case (when will I feel comfortable leaving that change of clothes in the car?!), her epi pen, and snacks. We also bring food to my in-laws. My MIL has gotten really good about making special items for us. I think/hope she is doing a good job with avoiding cross contamination. But it has also been a learning experience for her too. The first couple times she tried making stuff for us, it still had the allergen. Or she forgot and put sauce on the macaroni (the sauce was used to cook the sausage and meatballs that had dairy!). So usually now, I just bring our "butter" and bread and maybe other stuff depending on what she has planned. She will make a small amount of a version that is safe, then she will make the regular version for everyone else.


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When we go to a hotel, we get the efficiency so I can cook.

Sure, it's a pain, but that's what we do.
Last time we went on vacation was to see my sister. We stayed with her and cooked at her house with safe food. But there were a couple of times when we needed fast food. I asked her about keeping food in the car in coolers. However, she told me that wouldn't really work. It gets so hot that the coolers would not keep the food cool enough for long enough. She lives in Phoenix.

When we visit my family, I don't think the hotels there have any with a kitchen. I usually do get the suite so we can have a fridge and microwave. But we often don't check in until 9 at night and we are usually jut there overnight. so the fridge really only is to keep stuff cold over night, and that is if I have been able to keep it cold throughout the day when we have been back and forth to different people's houses. I feel very odd asking people who are not my parents if I can cook in their kitchen.
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#12 of 37 Old 01-29-2010, 04:18 PM - Thread Starter
 
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Are there options for DD2 that would work as a meal that you could try to always have on hand? ODD is on a TED and has been for almost 2 months, and she only has 7 "safe" foods ~ we've figured out things that she can eat when we go out. Usually if we know we're going out for dinner we'll pack her a turkey burger, rice crackers, pears and maybe some carrots. I try to *always* have rice cakes, pears (the little cups of diced pears work well because they travel and are easy to eat), and sometimes sweet potato chips. In a pinch that will work for lunch, and then I feed her a protein rich snack at home. Currently we don't have any protein options for her that would work well to always be in the car. If you have a bag in your car that is full of some substantial snacks that could work.
I think we are going to need to start a stash of stuff that is always in the car. I'm not really sure where to put it. I have an SUV. Maybe I'll have to buy some type of organizer or something for the back end or something. I'm not sure how well the fruit cups would work. They would probably freeze in the winter and get too hot in the summer, but we could do dry snacks.

But the fruit cups and maybe some chicken or turkey burger, etc. might be a real good idea when we go to summer picnics.

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It's hard when your kids have allergies, because we are so focused on food as a part of our culture, but you gotta do what you gotta do :P ODD knows that she can't eat what mommy and daddy are eating, and that is fine with her. If you make it not a big deal and are consistent with the reason she can't have things, then hopefully she will be ok with it.
Even at 2, she totally understands that there are lots of foods she can't eat. She is even pretty good at picking out which ones. She even asks "Does it have soy?". We fool around sometimes, when dd1 is getting ice cream or something. I will ask her is she wants so. She laughs at me and says "No, I allergic to ice cream (or dairy, or whatever)". The only things that confuse her are some of the soy items that she used to eat, but can't now, or some things that come in safe and non-safe versions - like pretzels.
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#13 of 37 Old 01-29-2010, 04:24 PM
 
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The other place I feel comfortable eating is Whole Foods, because they label everything. Though we've had some dense moments there. Like when I asked if there was any dairy in the bread, and the lady said no there weren't any eggs. I asked about other ingredients, and she listed butter. Hello?!?!

And even with hamburgers, you always have to ask if they're 100% beef. If they don't know, I ask to see the box. We got a hamburger patty at a Six Flags, and within 15 minutes, his upper lip was bright red. When we got home I emailed Six Flags, sure enough their hamburger had about 8 ingredients, one of which was soy. So always ask. Never assume.

I've gotten much more comfortable asking to do things in other people's homes. Like, "Can I just use your microwave to heat up my son's meal?" or "can I stick this [coconut milk] ice cream in your freezer so my daughter can have it for dessert?" I tend to bring my own dishes and a sharp knife so that I don't have to ask to borrow things. Outback has a gluten free menu, but online I think they list the other allergens. I always ask. I say we're avoiding this, this, this, this, this, and they write everything down. I reiterate as I'm ordering. I would like the hamburger patty with nothing on it. No bun, no seasoning, nothing. They ask "lettuce and tomato?" NOTHING. Some of them use oil on the outside of the baked potato. I always ask first. I ask. I want my kids to be safe. I ask. Then I ask again. We're avoiding corn, so I have my own little salt shaker in my purse. People look at me like I'm wacky. But I'd rather them look at me strange than have my child react.

You can ask about the rice in the Chinese restaurant, but usually the rice is just in a huge steamer that's rice and water only. My DS reacts to minute particles of soybean oil, so we're very careful about soy (we're really careful about all of it but soy and corn seem to be the most prevalent in processed food).

Your child has an epi-pen, that means the reaction is pretty serious. You are being diligent about having safe food. I think most people would rather let you cook in their kitchen than risk your child's safety. At least I hope so!

Kathy, mother of 3, wife of 1. My new recipe blog: www.kathysrecipebox.wordpress.com (no longer searchable by allergen, but at least it doesn't have a virus!)
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#14 of 37 Old 01-29-2010, 04:25 PM - Thread Starter
 
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We live in a small area that has plenty of restaurants, tho no chains aside from fast food. DD cannot eat at any of them for fear of xcon issues. We don't eat out. When we do go out of town, there are more options, but they are expensive (for us). We bring things from home and hit Trader Joes or some such place and stock up. I even bring my own pans when visiting family and friends. It's a pain, but it gets more manageable as you get used to it.
I've opted out of family reunions, ect when I felt unable to handle to the stress of preparing every meal from scratch on an outdoor cook site for 3 days. I could probably manage it fine now, but it's okay to opt out of things if it pushes you over the edge thinking about it.
It's really not too hard, it just takes a bit more planning and preparation! If I can do it, believe me, anyone can!
The thing I have found with local non-chain restaurants is that I cannot find out in advance about allergens because they either don't have websites or don't have the information available. I wanted to go to a non-chain local restaurant when we went out with my Mom in December (Christmas shopping time!). I contacted those that did have websites, and none of them were able to provide my satisfactory information.

And yes, I have opted out of things, but I am very concerned about dd1. I don't want her to resent dd2. She has already had to miss out on things she likes. She rarely has peanut butter anymore, she never gets macaroni and cheese. She used to get a cookie when we went to the mall. Other things too. That is why I refuse to take milk and ice cream away from her! It is not her fault and it is not fair to her. At the same time, it is not dd2's fault either and not fair to her to see dd1 getting things that she would like to have and can't.
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#15 of 37 Old 01-29-2010, 04:34 PM
 
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I have two covered bins in the back of the minivan. One has stuff like paper plates, napkins, plasticware, straws, benadryl, motrin, bandaids. The other has snacks (for us, sunflower seeds, raisins, potato chips, tapioca sticks [like potato sticks, from Indian market] water bottles/grape juice bottles [though I always have water bottles in my car], rice cakes). When it starts to get low, I replenish. I have a purse that's on the bigger side just so I can carry food in it when we go places. If we're going to Six Flags for the day, I bring all our food in (and let DD1, no food issues, eat anything she wants).

I send DH and DD1 out to dinner for Chinese or pizza sometimes. I cook things just for them too, because I keep foods/pots separate, but we also don't have a nut allergy. If we did, I'd forbid those from the house definitely. And I let DD1 get lunch at school sometimes. The other kids are okay with her eating things they can't. Luckily.

I'll go into restaurants and ask questions before we even sit down. Or I'll call them and tell them the restrictions and ask if they'll be able to accomodate us.

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#16 of 37 Old 01-29-2010, 04:35 PM - Thread Starter
 
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I hear you. We were only avoiding tree nuts and peanuts for ds, but then he developed a soy allergy -- and that's when eating out ended for us. You are right when you question the prevalence of soy in restaurant food -- it's really unavoidable unless you are getting a veggie salad w/o dressing or a fruit platter. (There are restaurants that we can go and spend $$$$ and avoid soy, but that's not what you are talking about, and not places that we are going to go on even a semi-regular basis.)

I arrange to be out when it doesn't fall over a meal, unless I can pack a meal. For example, you could pack a small lunch and carry it in a backpack when you go to the museum and get drinks there. Both of my dc's have small backpacks, and I've had them carry those on occasion. We use small ice packs to keep things cold. I do car maintenance on the weekend, or when my dh can help. When we fly, we need to stay overnight in a hotel before boarding the following morning and travel all day to get to our destination. It's a pain, I know, but we carry our food. All meals. And even though ds is the ONLY one in our family with severe food allergies, we all eat what he does. That may change when he gets older, but right now he needs our family support when we do family events so that he doesn't completely feel like an outsider or an inconvenience. And it IS a huge inconvenience, but I would never, ever want ds to feel that way -- so I suck it up and pretend that I like making picnics on the days when I feel grumpy about what could be, but isn't.

And in some weird way, I've started to be thankful that this is our predicament to avoid soy, as strange as it seems because we actually eat better than if we were allowed to eat fast food on occasion.
I understand your decision to all eat the same thing. I see your son is older (8). But for us since dd is so young, it actually works well for her to see other people eat things she can't. So she is growing up knowing and feeling that it is normal. As opposed to a kid who always had the same thing, then had to have something else. Your son is old enough to have more feeling of being an inconvenience. My dd is too young to have those feelings. However, because we are still nursing, I do have the same restrictions, so she is not the only one eating differently. In fact when we go out with me and both dd's, it is dd1 with no allergies who is the 1 eating differently!

I have had people tell me I should wean (even when we thought dairy was the only allergy). But my thoughts were that I didn't want to take something as important as nursing away from her. Plus, if I expect her to eat certain foods, why shouldn't I too? I need to find a way for work with the allergies so that her life is a normal as possible. Isn't a good way to do that with me eating the same things? If I expect her not to be able to eat something, isn't it better is she sees that I also am not?

We don't nurse a ton. Mostly before bed and sometimes at night. The at night will probably go away as she sleeps better. She doesn't always nurse when she wakes at night. So sometimes it is just before bed. I am sure it won't be that much longer before she doesn't need that either.

In the meantime, the restrictions DO mean that I eat less junk. That can't be a bad thing, right?
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#17 of 37 Old 01-29-2010, 04:42 PM
 
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Kathy, I know for sure there are people with a longer list than us. And I always feel guilty when I complain because I DO know that there are people more restricted! I also look to you (people who have alot of restrictions and have learned how to live with it) for suggestions so I too can learn to live better with it.
I wasn't trying to minimize your restrictions. I just wanted to say even with more restrictions, it is possible. I don't want you to take it the wrong way. Sorry.

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#18 of 37 Old 01-29-2010, 04:45 PM - Thread Starter
 
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I'm watching this thread because we are about to go on a big family vacation in a strange city--a huge deal for us, we never take vacations.

Dd2 was recently tested for IgG food sensitivities and came back with 39 highly sensitive items plus 4 moderately sensitive. Dp is still nursing her & is avoiding all the same items. They include all the top 8-10 allergens plus all legumes, many other nuts, many fruits and rice.

We will be staying with friends and packing some food & shopping once we get there, and I know we will pack a lot of food with us, but I'm expecting this to be extremely challenging, as we will often be out for a whole day over lunch & dinner and while dd2 is still a toddler & can be satisfied with snacks, poor dp gets hungry! But other than just eating plain chicken, I'm not really thinking there will be basically anything else they can eat. Sigh.

ETA: Of course we are not in nearly as challenging a situation as you, since we are only dealing with sensitivities that cause sleep, skin and behaviour challenges, and nothing life threatening! I can't imagine how difficult that must be! Big (((((hug))))) to you...it sounds stressful!
You know what? sleep, skin, and behavior issues are no fun, especially when on vacation. So I don't think it is any worse for us. Most places are good about peanuts and that is the scariest one for us, and many many places have no tree nuts. or at least have many options without peanuts and tree nuts. It is the dairy and soy that are the highest prevalence. I now, I really think it is the soy more than the dairy.

When we went on vacation, we stayed with my sister. We shopped the day after we got there and again about halfway through. The kids literally snacked all the time when we were driving. I think we only had fast food 2-3 times. We didn't know about the soy then, so it was Jack in the Box and Burger King. If I remember correctly, Jack in the Box used a lot of soybean oil on the menu. They did at least have a very good printed copy of their menu with allergens clearly spelled out.
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#19 of 37 Old 01-29-2010, 04:46 PM - Thread Starter
 
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I wasn't trying to minimize your restrictions. I just wanted to say even with more restrictions, it is possible. I don't want you to take it the wrong way. Sorry.
No worries, I didn't take it wrong. I just glad we have a forum like this for us to learn from each other!
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#20 of 37 Old 01-29-2010, 05:01 PM
 
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OP, I'm new to sensitivities/allergies but just wanted to chime in regarding the Children's Museum.
My older dc and I lived at the museum when they were younger. It's the cheapest, most fun, and educational thing to do in this town. I was a single mom at the time so eating out was almost never an option. The kids and I would pack our own lunch in the cooler and head out. They loved being a part of making and packing the lunch. I don't think they really missed eating out. Making and packing the lunch became part of our "family weekend" time.
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#21 of 37 Old 01-29-2010, 05:21 PM - Thread Starter
 
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The other place I feel comfortable eating is Whole Foods, because they label everything. Though we've had some dense moments there. Like when I asked if there was any dairy in the bread, and the lady said no there weren't any eggs. I asked about other ingredients, and she listed butter. Hello?!?!
I've had people ask me if I want cheese after I told them about the dairy allergy! Then I've had people say, no to dairy, and oh, but there are eggs.
We also don't have a Whole Foods or Trader Joes here.

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And even with hamburgers, you always have to ask if they're 100% beef. If they don't know, I ask to see the box. We got a hamburger patty at a Six Flags, and within 15 minutes, his upper lip was bright red. When we got home I emailed Six Flags, sure enough their hamburger had about 8 ingredients, one of which was soy. So always ask. Never assume.
I know this too. That is why I was concerned about the burger I ate. He couldn't tell me but I needed something with protein.


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I've gotten much more comfortable asking to do things in other people's homes. Like, "Can I just use your microwave to heat up my son's meal?" or "can I stick this [coconut milk] ice cream in your freezer so my daughter can have it for dessert?" I tend to bring my own dishes and a sharp knife so that I don't have to ask to borrow things. Outback has a gluten free menu, but online I think they list the other allergens. I always ask. I say we're avoiding this, this, this, this, this, and they write everything down. I reiterate as I'm ordering. I would like the hamburger patty with nothing on it. No bun, no seasoning, nothing. They ask "lettuce and tomato?" NOTHING. Some of them use oil on the outside of the baked potato. I always ask first. I ask. I want my kids to be safe. I ask. Then I ask again. We're avoiding corn, so I have my own little salt shaker in my purse. People look at me like I'm wacky. But I'd rather them look at me strange than have my child react.
Yes, I am going to have to get over it and make myself feel better about using people's kitchens and not worry so much about being a pain in the rear with my questions.

I will also look at the Outback website again.

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You can ask about the rice in the Chinese restaurant, but usually the rice is just in a huge steamer that's rice and water only. My DS reacts to minute particles of soybean oil, so we're very careful about soy (we're really careful about all of it but soy and corn seem to be the most prevalent in processed food).
I will keep the steamed rice in mind next time I am in a situation where I may need it!

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Your child has an epi-pen, that means the reaction is pretty serious. You are being diligent about having safe food. I think most people would rather let you cook in their kitchen than risk your child's safety. At least I hope so!
At least the epi-pen is primarily for the non-soy allergies. She has never really had a significant reaction to soy. But yes, I do take her allergies seriously. And I think/hope others will too as they see that I do.
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#22 of 37 Old 01-29-2010, 05:23 PM
 
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I understand your decision to all eat the same thing. I see your son is older (8). But for us since dd is so young, it actually works well for her to see other people eat things she can't. So she is growing up knowing and feeling that it is normal. As opposed to a kid who always had the same thing, then had to have something else. Your son is old enough to have more feeling of being an inconvenience. My dd is too young to have those feelings. However, because we are still nursing, I do have the same restrictions, so she is not the only one eating differently. In fact when we go out with me and both dd's, it is dd1 with no allergies who is the 1 eating differently!
I think every family is going to have a different philosophy on this. Our family philosophy is that when we are together as a family, we eat as a family. DS has had plenty of opportunities to know that he can't eat what others can. He's been to numerous birthday parties where he has to bring his own treat to eat, for example, and has since he's been very young. We knew about his peanut and tree nut allergy (anaphylactic) since right before he was 2. He definitely now knows, but I think he knew quite a bit younger that he was not eating the same things. I just don't want to bring that type of separation into our home. We've eliminated all processed foods and I make our meals from scratch. That was a huge change in the way I used to cook. (I really miss prepackaged foods for convenience! Soy took that away, too.) And our extended family is wonderful about making accommodations for him, which helps. But outside of family, he is constantly being reminded that he is different.

ETA: I think that it would definitely be harder for us if there were more restrictions in our diet -- right now we just need to avoid all nuts and soy. I might be singing a different tune if we had more restrictions.


DD has no restrictions. There have been times that she has complained that it isn't fair that she can't eat things that are fine for her in our home, or that we can't just go to McDonald's and get a happy meal. But she is beginning to fully understand that she has opportunities outside of our home to eat things that wouldn't be safe for ds - and she gets those opportunities. She also doesn't want anything bad to happen to ds, and as a family, we make sure that everyone in our family is safe first. We stress the difference between needs and wants, and to another extent, deferred gratification. There have been times when I've been caught without something for ds, and he's had to go without - like completely without - no safe alternative. I'd like to think that because he knows we will make it up, and because we stress safety first at home, that he hasn't the need to sneak unsafe food when I'm not watching or have a complete meltdown when he can't be included in eating what everyone else is.

It's tough, I know.

Laura - Mom to ds (10) and dd (7) "Time stands still best in moments that look suspiciously like ordinary life." Brian Andreas.

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#23 of 37 Old 01-29-2010, 05:45 PM - Thread Starter
 
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I have two covered bins in the back of the minivan. One has stuff like paper plates, napkins, plasticware, straws, benadryl, motrin, bandaids. The other has snacks (for us, sunflower seeds, raisins, potato chips, tapioca sticks [like potato sticks, from Indian market] water bottles/grape juice bottles [though I always have water bottles in my car], rice cakes). When it starts to get low, I replenish. I have a purse that's on the bigger side just so I can carry food in it when we go places. If we're going to Six Flags for the day, I bring all our food in (and let DD1, no food issues, eat anything she wants).

I send DH and DD1 out to dinner for Chinese or pizza sometimes. I cook things just for them too, because I keep foods/pots separate, but we also don't have a nut allergy. If we did, I'd forbid those from the house definitely. And I let DD1 get lunch at school sometimes. The other kids are okay with her eating things they can't. Luckily.

I'll go into restaurants and ask questions before we even sit down. Or I'll call them and tell them the restrictions and ask if they'll be able to accomodate us.
The bins are a great idea. I even have a couple extra empty ones!
About the Benadryl and Motrin in the car - Is it ok for them to get hot? or do they need to be kept at room temperature? I normally carry the epi-pen and Benadryl (I have the pre-measured ones) in my bag.

Do placed ever give you grief about bringing outside food in? I went to 1 place that told me it was fine, but my older dd had to eat their food since she didn't have allergies.

I do occasionally cook things just for dd1. I don't use separate pans though.

I really want to ban Peanut Butter from our house. All other peanut and nut products are banned. Although my husband will not co-operate! I was so mad. I told him not to buy any peanuts or nuts for our house. I told him if he wants them, he needs to eat them at work or somewhere else. It is just to easy for salt to fall off them onto the couch or floor or for him to touch something with the oils/protein still on his hands. She is SO allergic! I didn't want them anywhere near the house.

The next day while I am nursing dd2 on the couch before bed, he sits down in front of the TV with a container of peanuts!! I got really angry with him and asked him if we was trying to kill our daughter or what. Can't he eat the peanuts somewhere else? etc. Guess what? He couldn't get the container open! so he ended up not eating them.

dd1 really like peanut butter. There are not very many protein sources she is willing to eat and she is very picky. The peanut butter we have we have had for a long time - before we knew about the allergy. I tried to convince her to eat PB&J sandwiches at school, but she doesn't like them for some reason. I rarely let her have PB at home because of the allergy. We are still on the same jar from almost a year ago. But it is one of those things where I feel that taking it away altogether would be a punishment to her that she does not deserve. But in actuality, it really needs to go. Death is not a punishment that dd2 deserves either. and it literally could kill her.

My husband is so not good with this allergy issue. This weekend, dd1 wanted a PB&J sandwich for dinner. I told her she needed to wait until after dd2 had her dinner. Then I took dd2 upstairs so my DH could make her the sandwich. I really should have sent him with dd2 and I could have made the sandwich. dd1 was to wash her face and hands thoroughly with soap and water when she was done as well as strip her clothes. First off, she came upstairs without doing this. I promptly got the job done. Then I went downstairs and cleaned the table and counter. Then I cut dd1's nails while dh played with dd2. Afterward, I noticed dd2's face (forehead and cheek covered with hives). Apparently while playing with DH, he had kissed her, and apparently earlier he had licked the PB knife after making the sandwich!!! I was so mad. I gave her the Benadryl, and before bed the hives were gone. Maybe now that he saw this, he will take it more seriously and get rid of his peanuts!!!

That was the first time he ever saw her have an allergic reaction like that. When she had nuts before (when we discovered there was an allergy), he was not home.

Maybe he didn't realize how serious it is? I hope he knows now.

Maybe if dd1 doesn't have the option of PB at home anymore, she would be willing to eat it at school? I don't know, but what I do know is that something that she used to have many times a week, sometimes every day she is hardly ever allowed to have now.

We've tried Sunbutter, but she didn't like it.

somehow I need dd2 to be safe without making dd1 resentful and without taking too much away from her.
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#24 of 37 Old 01-29-2010, 05:46 PM - Thread Starter
 
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OP, I'm new to sensitivities/allergies but just wanted to chime in regarding the Children's Museum.
My older dc and I lived at the museum when they were younger. It's the cheapest, most fun, and educational thing to do in this town. I was a single mom at the time so eating out was almost never an option. The kids and I would pack our own lunch in the cooler and head out. They loved being a part of making and packing the lunch. I don't think they really missed eating out. Making and packing the lunch became part of our "family weekend" time.
yes, I suppose this IS what we will need to do. Do you carry it with you, or do you keep it in the car and get it when you are ready for it?
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#25 of 37 Old 01-29-2010, 05:53 PM - Thread Starter
 
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I think every family is going to have a different philosophy on this. Our family philosophy is that when we are together as a family, we eat as a family. DS has had plenty of opportunities to know that he can't eat what others can. He's been to numerous birthday parties where he has to bring his own treat to eat, for example, and has since he's been very young. We knew about his peanut and tree nut allergy (anaphylactic) since right before he was 2. He definitely now knows, but I think he knew quite a bit younger that he was not eating the same things. I just don't want to bring that type of separation into our home. We've eliminated all processed foods and I make our meals from scratch. That was a huge change in the way I used to cook. (I really miss prepackaged foods for convenience! Soy took that away, too.) And our extended family is wonderful about making accommodations for him, which helps. But outside of family, he is constantly being reminded that he is different.

ETA: I think that it would definitely be harder for us if there were more restrictions in our diet -- right now we just need to avoid all nuts and soy. I might be singing a different tune if we had more restrictions.


DD has no restrictions. There have been times that she has complained that it isn't fair that she can't eat things that are fine for her in our home, or that we can't just go to McDonald's and get a happy meal. But she is beginning to fully understand that she has opportunities outside of our home to eat things that wouldn't be safe for ds - and she gets those opportunities. She also doesn't want anything bad to happen to ds, and as a family, we make sure that everyone in our family is safe first. We stress the difference between needs and wants, and to another extent, deferred gratification. There have been times when I've been caught without something for ds, and he's had to go without - like completely without - no safe alternative. I'd like to think that because he knows we will make it up, and because we stress safety first at home, that he hasn't the need to sneak unsafe food when I'm not watching or have a complete meltdown when he can't be included in eating what everyone else is.

It's tough, I know.

Ah see, I guess maybe I misunderstood a but too.

I most certain do not cook multiple meals. We all eat the same thing too in that sense. But if we go to a birthday party, dinner at someone's house, dinner out, etc. dd1 eats whatever is there or whatever she wants. While dd2 and I are the only ones eating the separate food.

So if we are at a restaurant, dd1 can still have ice cream, milk, etc. even though dd2 and I can't. Although if it is just me with them, I wouldn't let her have peanuts or tree nuts because the risk to dd2 is so much higher. I also make sure they do not sit next to each other. I sit next to dd2. dd1 sits on the other side. I much prefer if there is another adult to sit on the other side to help with dd1 so that I do not have to touch her food in anyway, but that usually is not the case.

It will be interesting to see how she handle her allegies as she is older and less supervised - like at friends houses and such.
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#26 of 37 Old 01-29-2010, 06:12 PM
 
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My DS is 9yo. He has been on/off restricted diets since birth. The nurse at school is supposed to call us ahead of time for birthdays so we can be prepared. Yesterday I told DS, when we were walking back from the bus stop, that I'd made him cookies, and that he could have a couple, then we were going to freeze the rest for birthday parties at school and such. He said, "there was a birthday party today." I said really, what was there? He said, "Cupcakes, but I knew I couldn't have any. It was fine." And it wasn't a big deal. Some days he thinks it's a big deal, but most days he's fine with it. DD2 has been restricted since 1yo so she doesn't really know any different. And she's very good about it. If it's a single food (like cantaloupe), she knows she can have it. If it has an ingredient list, she knows she can't (except for certain brands of potato chips and stuff that she recognizes). My DD1 (12yo) can look at an ingredient list and tell if the kids' food triggers are in it, for the most part. And whenever anyone else is here (grandmother, babysitter, etc.) she looks over everything. She's protective of them.

If there was an epipen allergy in the house, I wouldn't have that food. Especially peanuts, with the oil? Forget it. My DH was helping my DS learn the trumpet and one day he was drinking coffee with half & half in it, and they were taking turns. A few minutes later my DS got the lip rash. Dh now has his own mouthpiece for the trumpet. I think it makes a big difference when they see a reaction. At least your DH saw the hives, and sees what can happen with a "minor" contact.

I keep the benadryl in the car except in the summer (then it goes in my purse). For us, it's me, DS and DD2 that need special foods, so I can get away with bringing a bunch of food in. And I actually haven't had a problem (zoos, Six Flags, etc.). DD2 just went to a bday party at Chuck E. Cheese and she brought her own food. No one even questioned me. I still didn't want her touching everything, but I watched her like a hawk.

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#27 of 37 Old 01-29-2010, 06:34 PM
 
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I can't add much that hasn't already been said.

We share your allergies to dairy, egg, peanut. DS and I also cannot do wheat. We still safely (I think) eat soy.

Gluten free pancakes are a mainstay, both at home and while traveling. I make a bunch and bring them in a ziploc. They are fine cold, can be used as "bread" to hold onto a burger or slab of sausage, spread with a touch of jam for a sweet snack, and they're carby so they fill a hungry belly better than a pure protein might (like a safe burger is great, but...still hungry). At relatives' houses, I make up the pancake mix in advance and bring it in a jar, and cook them fresh each day.

When you're on the highway, PILOT truck stops/gas station/convience stores have microwaves that you can use to heat whatever you've brought with you. On a day that we start out on a road trip, I pack safe leftovers for DS and myself. We stop at Pilot, and DH gets Subway or whatever fast food is attached to the Pilot, and I reheat leftovers for DS and myself. We all eat together at the fast food tables.

For those who CAN do soy, Chipotle is great. But, everything has soy/soy oil.

I want to second Outback. Wendy's burgers and baked potatoes we do.

DS, 10/07. Allergies: peanut, egg, wheat. We've added dairy back in. And taken it back out again. It causes sandpaper skin with itchy patches and thrashing during sleep. Due w/ #2 late April, 2012.

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#28 of 37 Old 01-29-2010, 07:19 PM
 
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When my allergic DD was young (under 3), I kept a few safe jar baby foods in the car for her to eat in a pinch. She was bald for a long time and others would comment on how she could manage to feed herself. I'd even buy a jar at Whole Foods if we were stopping there for lunch rather than try to find something safe. Now I carry a big purse with a snack section (often raided by my 11 yo DS) and a packed box in the car just in case.

We have carried food with us in places like concerts, theaters and museums. Flashing the Epi-pen has worked for acceptance. I do have a small cooler that looks more like a purse.

We have had one trip to the ER so DH and DS are able to adjust their eating for safety. I got so used to being safe for her after 3.5 years of nursing that I still avoid nuts, peanuts and eat very little eggs, dairy or shellfish (and she weaned a year ago).
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#29 of 37 Old 01-30-2010, 12:29 AM
 
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I'm grateful to find this thread! My children are allergic to gluten, soy, dairy and sugar. We homeschool and have lots of activities outside of the house. I'm trying to get more organized with lunches and snacks and being prepared for unexpected meals out. It's stressful sometimes.

Thanks for the ideas.
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#30 of 37 Old 01-30-2010, 12:51 AM
 
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Quote:
Originally Posted by wwisdomskr View Post
I'm grateful to find this thread! My children are allergic to gluten, soy, dairy and sugar. We homeschool and have lots of activities outside of the house. I'm trying to get more organized with lunches and snacks and being prepared for unexpected meals out. It's stressful sometimes.
All of them are allergic to the same things?

Kathy, mother of 3, wife of 1. My new recipe blog: www.kathysrecipebox.wordpress.com (no longer searchable by allergen, but at least it doesn't have a virus!)
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