Monday, May 4, 2009

Food Allergies and Comfort Levels

This past weekend my daughter was invited to go to a soccer game with her best friend. Her parents are aware of her food allergy, but to varying degrees. The mom is more on top of it, but the dad knows about it as well.

After agreeing on some basic rules, we sent our daughter off with my cell phone and asked her to eat only the snack we had packed for her.

I was feeling a little anxious because I realized after she left that I wasn't 100% sure where the soccer field was located. Of course, I want to know everything! What if, worse case scenario, we needed to tell an ambulance how to get there? I tend to envision worse case scenarios--I figure, be prepared.

My husband wasn't worried because my daughter had gone to soccer games with the same family before and had been fine. Also, she's very good about her allergies and knows what to avoid. We've also been teaching her how to use the EpiPen herself and how to recognize symptoms. But the best thing we tell her is: don't eat anything you're not sure of. I always send food with her anyway.

I called my daughter on my cell phone to find out the location of the soccer field and that was that. But I realized that my husband and I also have differing thresholds of comfort with her food allergy. For example, I find it hard to relax when eating in a restaurant with our daughter if it's overly busy or we haven't been there before. My husband doesn't really worry in a restaurant--although he is often the one to initiate the food allergy discussion with the staff.

It made me wonder what other FA families comfort levels are. For example, do you let your child eat at a restaurant if you're not in attendance? What about going to other places where there is high-risk food or the risk of food allergens? Do you let them go with precautions or do you have them skip it? Do you tend to worry more, or does your spouse? You get the drift.

Some of what you'll decide is relative to your child's age, but not always. Also, I've noticed peer pressure rearing its ugly head already with my 9-year-old girl. Like most "tweens" she dislikes being different, so my strategy is going to be consistency. Always following the same protocols for food will leave her well-equipped to manage it on her own. She won't have to wonder, "Well, once we handled food one way, and once we did it another way. Should I eat the food or not?" I want her to just not eat something she's not sure about and leave it at that. Keep it simple is my motto.

By the way, my daughter had a great time and returned home safely. I didn't get the "phone call." And I'm hoping that I won't get it, ever, if we make sure that she knows what to do.

Please participate in my informal survey and let us know what your comfort levels are with regard to your FA child's independent activities. This topic seems to be a hot-button issue for many families, so your answers should be interesting!


Sean said...

In our house, mom is the one with the higher comfort level while I tend to be more nervous about our daughter's peanut allergy.

In our case our daughter is only two so we don't have to worry much about her going off on her own. But even "simple" things like having a relative look after he for an afternoon can wear on me, and I'm usually the one who reminds (OK, nags) the restaurant staff about her allergy.

Incidentally, I find this matches pretty closely with our overall comfort level on non-allergy concerns. I'm usually the one who tells my daughter "hey, don't try to balance on top of that" while my wife has an easier time letting her test her limits on her own.

Unknown said...

You and I seem a lot alike in this case. I would've been the same way, and would've done just what you did. My PA son is 9 as well and extremely responsible regarding his allergy. But I still acknowledge that he's only 9. Restaurants--it's exactly the same with my husband and me. I tell him he needs to do the talking in restaurants since he's more comfortable with those face-to-face discussions. I take care of the homefront and school situations. I also tend to go out to eat with a little bit of anxiety each time. Comfort zones is always of interest to me as I feel like ours is a bit looser than others. Though people who don't deal with allergy everyday think I'm overly paranoid. My son has only had one reaction ever and that was the initial one when he was 11 months old so our comfort zone seems to work fine for us.

Unknown said...

Such an interesting topic. I think the different comfort levels are part of what can make dealing with food allergies at school even more challenging. Since my son is only 5, he does not eat at restaurants without me. I am not sure what I will do as he gets older. I guess we will all learn together. We avoid places with high allergen levels still. And I am definitely more cautious than my husband, though I think my mother and father are at least as cautious as I am, maybe more so. I think my comfort level continues to evolve as time goes by and he gets older.

Grant's Mom said...

My son is 3 and since we found out about his allergy we have not eaten at a restaurant. It's too scarey. I have even started making my own pizza, of course after contacting the flour, yeast, oil, tomato and cheese companies to make sure they were nut free. I know it's overkill as some of my friends and family have let me know, not always in the nicest of ways. Anyway, if I'm not going to be the best advocate for my son, who will?

Col said...

My son just turned 5. I wouldn't let him eat restaurant food without us, except maybe McDonalds. (He's can have fries and a burger with no bun, that's it.) When we do go out, I have to scout out the menu in advance, since his particular combo of no dairy, eggs, nuts, or gluten is extraordinarily difficult.

But I'm fine with him attending short events or playing with friends. He reliably refuses to eat food unless it comes from home. So I pack him a snack and an EpiPen, review his issues with the parent in charge, and he's fine.

All-day events are another story. I gave up on day camp this summer; I wasn't comfortable with any camp that I looked at. And I still haven't figured out all the issues around him starting all-day kindergarten in the fall.

Mary Beth said...

Interesting topic... In our house, I am definitely the more cautious, worrying parent. My husband is more laidback about our daughter's allergy, but I blame that in large part on the fact that he did not see either of her two reactions. I don't think he appreciates how scary it is. I too worry about leaving her in the care of others. Even grandparents are frightening - my daughter's second reaction was caused by a chocolate candy filled with peanut butter which her grandmother had mailed to her! And grandma works for the chocolate company! Crazy. I definitely have the feeling that no one is going to be as good of an advocate for my child as me.

Intl Maman said...

I am way less paranoid than all of you and DH pretty much follows my lead. My mom is actually the worst for not checking things. She is food allergic and has been since long before the days of labelling or anyone caring, so she just touches her tongue to things assesses herself and then eats or doesn't. It's hard for her to understand how things are different now.

But that and having grown up in coastal Maine with a best friend who is ana to shellfish, also in the days before labelling or people caring, I am more trusting of my daughter's ability to know by smell what she can eat and I am not so scared of the 'may contain' labels.

I have often thought of calling my best friend's mom and asking her how she did restaurants in Maine with my friend, but I haven't done it yet. I have been going out to restaurants with her for almost 20 years though, sushi places, Maine seafood places, and she lived in Hong Kong for 6 months, so I guess I don't see this as as much of a death sentence as do lots of other parents.

I wish DD didn't have it, but we eat in restaurants (carefully), we travel, we order in pizza and we eat 'may contain' things (and then we monitor closely --never had a reaction so far).

Frankly I feel like a freak in the FA community, but all of our allergists in 3 states and 2 countries have been absolutely fine with our attitude and never suggested that we do things differently.

Unknown said...

My son is almost 9 now and with his allergies to dairy, eggs, peanuts and tree nuts, eating in a restaurant is nearly impossible.

It's interesting because right now I care more about him feeling different than he does. Recently at school, snacks were given out each day after the state education tests. I was checking in with the teacher about what the "snack of the day" would be so I could send something similar in. My son said, "I don't normally eat a snack in the middle of the morning. I don't need anything. I'll just wait til lunch." kid.

I hope to keep the lines of communication open so we can keep a balance we're both comfortable with. But those rebellious teen years are right around the corner...

Jenny said...

Thanks everyone for your comments.

I feel the need to respond to Intl Maman, though, in the interest of the other readers of this blog. Based on her calling us "paranoid" as well as her other comments, I'm pretty sure I won't be able to convince her that she's playing with fire, but please, the rest of us should not be ashamed of being cautious. If we're not, who will be?

A couple of points: It's not "paranoid" to be cautious of the food that a severely allergic child eats. That's pretty important to recognize. I wonder if this poster ever watched their child have a severe reaction, as many of us have done.

Second, never "touch your tongue" to foods to determine if they are safe. This is not fool-proof, though it is foolish. My recent FAAN newsletter has this exact question addressed by Dr. Robert Wood (a prominent allergist) and he says that touching your tongue to a food or eating a tiny amount to ascertain whether or not it contains an allergen is not safe and should not be practiced. According to his report, many times you won't react to food until you've ingested it fully. Please, don't do it and don't let your child do it.

Third: May contains labels. Pay attention to them! Intl Maman, have you seen the news reports stating that food with the may contains labels often DO contain the allergen in question in levels high enough to trigger a severe reaction? Why would you even risk it?

As my allergist told me when my then 4-year-old daughter wondered if she could still eat M&Ms (that contain a peanut may contains warning): Maybe she'll eat them 10 times and be fine. The 11th time you'll get the reaction and wind up in the hospital or worse. In other words: if a food may contain an allergen, don't let them eat it!

The 4th thing: not every child is equally allergic to a food. Some are severe enough to warrant extreme caution and some are certainly milder.

INMHO it's not enlightened, cool or hip to put your child's life at risk because you don't want to be perceived as "paranoid." Do what's best for your own child no matter what anyone says.

Intl Maman said...

I have to respond. Firstly I don't think being paranoid is neccessarily a bad thing. I am plenty paranoid about many things, including restaurants with my FA daughter, homes with pets with my asthmatic daughter and car seat safety with everyone. I am sorry my choice of words offended. It was not meant to.

As for touching tongues to things, I do NOT advocate that people do that. I certainly do NOT ever tell my daughter to do that. However, when my mother was growing up with and learning to deal with her allergies (she was born in 1945) that is what she did and continues to do. As I said in my previous post, she doesn't really recognize that understanding and recommendations have moved on and so is actually less safe around my daughter than many people with no experience with FA.

That said, there is another component to allergies that isn't often mentioned and that is threshold. Some people need to eat an entire peanut in order to trigger a reaction, which will then kill them. Half a peanut is fine. For others trace amounts is enough to set off the reaction.

We don't understand how thresholds are set or if they change over time, but someone could have severe reactions like my dd and never react to trace amounts, like my dd, even when they are present in foods. So far we are confident that her threshold is above trace amounts and will continue to work on that assumption until we learn otherwise.

We know that her reactions are swift and severe (yes, I have used an epipen and many many doses of benedryl) so knowing that up to 10% of products that say may contain do actually contain trace amounts, we, and her allergists, feel confident that, for her, trace amounts are okay at this point in time.

I think where I differ to most other FA parents is in my reaction to DD's reactions. They are severe. They are swift. And they are FAMILIAR to me. I grew up around people who carried epipens. I was a PAL before that term or FAAN ever existed.

We do everything we can to educate DD on her allergy. We find it scary and frightening to send her off into the world. She will not be going to public K in the fall for this reason. But, I will find it just as scary, if not more so, to send out for her first solo drives after getting her license as well and to watch her get into a car with any other under 21 driver will hurt my heart as much as letting her go to a birthday party does now.

And just as I know through witnessing it myself, that the vast amjority of people survive their teenage driving experiences, I know, through witnessing it myself, that the vast majority of FA kids will also survive to adulthood and thrive, even without a bubble placed around them.

Parenting is hard. Parenting a FA child is a roller coaster you never wanted to get on. I am constantly grateful that the FAs my DD deals with so far are relatively easy to avoid (peanuts, treenuts and shellfish) unlike dairy, egg, wheat, soy or corn. I worry constantly that we aren't done adding to her list since they new alleriges were separated by lots of time (years) between them.

Every time we try something new, like ordering at a local chinese place where we can watch them cook our food (and clean the wok before hand) I am scared and have everything, solupred, epi, bene and zantac, at the ready. We never leave home without the epi, solupred and bene. I haven't found a good way to carry single dose Zantac or we would have that too.

I stress again, that our allergists, including Dr. Burks, are fine with our handling of our DD's allergies. We don't hide anything from them.

I don't care how people perceive me (clearly or I wouldn't have spoken up on a FA comment board since I knew the reaction I would get) but I do want people out there to know that there is another attitude to have and it isn't cavalier or uncaring or showing a lack of fear.

Jenny said...

In response to the response: it seems that you did a 360 from your previous post, but I'm relieved to hear that any parent takes their child's food allergies seriously.

Just one other thing for the readers at large to consider: I have never heard an allergist recommend, as you claim Dr. Burks does, that a severely allergic child should eat "trace amounts" of the allergenic food, nor have I heard the 10% statistic regarding "may contains" labels. Based on my own research, it's unclear how many of the foods that are labeled "may contains" actually have more than trace amounts of a given allergen. That's why it makes sense for people to avoid them.

I certainly appreciate everyone's spirited responses on what I have said before is a hot-button issue.

Lori said...

I'm a single parent. No one takes my daughters food allergies as seriously as I do. Even our most trusted friends and family members slip up from time to time and don't think that they are doing anything risky.

I am paranoid, I can't relax in a restarant, even if I've been there before. I don't let her go to far away and I can't sleep well after we go out until several hours have passed, just to make sure she's ok.

I bring her own individual butter and jelly and mayo, etc. When we go on vacation or to my parents. I put her food on a piece of foil in their toaster oven. They don't think about what might have been on a knife when it was dipped into the jar in the past.

My daughter is 7 and attends public school. I send her lunch and I supply her snacks to the afterschool program. It took two years before I let her go on a field trip without me. I am still on edge when they leave, and watch my clock at work until I know they are back at school.

I try to treat it matter of factly around her, but it's tough. She is good right now about not eating things that I have not provided. She had one really bad reaction when she was 5 that resulted in her going to the hospital and it scared her. (She found a piece of chocolate candy at the mall and ate it without me knowing.)But she wants to fit in and is sometimes sad and angry when someone brings in a treat unexpectedly for the whole class and she can't have it.

Sue said...

My daughter is 4 1/2 so I have yet to have to brave sending her off without me. But my comfort level is pretty low. She is contact-reactive to dairy, which also adds another level. There is only 1 restaurant currently that I take her to. I bring her own food wherever we go. Yes, I have turned down parties, but that is rare. Usually I do my best to manage it and have been lucky with great friends.

I would have been the same as you - needing to know every detail. I give you credit for letting her go - not an easy thing to do.

Carla Burke said...

My daughter is 9 and was diagnosed at 23 months with a severe life threatening peanut allergy. In regards to eating out, we have never worried or questioned it. I never even thought about mentioning her allergy in a restaurant until I saw this posted on your blog. At ice cream shops we do mention it. When we eat out we only eat at kid friendly restaurants and she always eats the same thing; macaroni and cheese, chicken nuggets or cheeseburgers and fries. We have even eaten at Chik-Fil-A (don't know if you have one, but they cook with peanut oil) until last year when our allergist advised against eating there because of the peanut oil.

So we pretty much don't think about it. Of course I would never take her to an Asian restaurant. She orders Tuna at Subway. We stay away from anything that has peanuts or tree nuts.

kelly said...

hot topic! jenny, I loved your post on this, and especially your response to being "paranoid". I get that same reaction from other non FA parents and it truly stings. I always tell them to imagine for 5 minutes living with the fear we live in every day. Thank you so much for always passing along your trials and tribulations, so we all can learn from them. On to the restaurant roundup now!

Jenny said...

Carla, love your blog! I'm surprised to hear that you've never communicated about your daughter's nut allergies at a restaurant. My allergist was really firm about this with us early on and it seems maybe your doctor never discussed it with you? We never know what goes into the food that other people cook unless we ask. I hope you will consider mentioning your daughter's nut allergies to restaurant staff in the future--I've heard stories of mashed potatoes or even tomato sauce with peanut butter or oil as an ingredient. I agree about skipping Chinese or Asian food--way too risky if you have a severe nut allergy. That's the first thing my allergist told us to avoid.

Even in non-ethnic restauratns, there is no logic to a lot of restaurant cooking, which is why it can be high risk for people with food allergies. I hope everyone will ask about ingredients and avoid the top 3 things mentioned at the recent FAAN conference I attended: desserts, sauces and buffets.

Carla Burke said...

Hi Jenny, I'm really glad I found your blog. It is so informative. I've only recently started researching peanut allergies and reading blogs. It has really opened up my eyes! I take Amanda to the allergist every 6 months and none of this has ever been mentioned to me which is why it never occurred to me let restaurants know. I just recently had her stop eating may contain products because of what I was reading on the internet. It really started scaring me and now I'm very cautious. Her school is not nut free and she sits at a table with her class. I am looking for a new allergist for Amanda and again I'm so glad I started researching and reading blogs because I never would have known any of this. It amazes me. I thank God for all the information I'm getting now - and it hasn't been from my allergist lol!

Carla Burke said...

Oh I forgot to ask you, what sauces should be avoided? I haven't heard of that. We absolutely avoid all desserts, cookies etc. We do go to ice cream shops and let them know and they use a new scoop. We have eaten a buffets. She's too shy to get food herself so I'll get it for her and usually it's the mac and cheese because she's so darn picky. Is that safe to eat?

Jenny said...

Hi Carla,

There are so many questions when you first find out about your child's allergy! I remember having all of the same questions/concerns.

Your daughter should be fine sitting with her class at lunch--many schools designate the end of the lunch table as "peanut free." It all depends of course on how highly allergic a child is--it sounds like yours would be OK in a lunchroom. The important thing is to tailor it to your child's needs.

Regarding sauces--there is no one specific sauce to avoid, according to my doctor and according to all of the research I've done, including a talk I just heard at the FAAN ( Conference in Chicago.

The reason that nut-allergic people avoid sauces is because they can easily "hide" ingredients. For example, Mexican mole sauce contains almonds and usually peanuts--but they are ground up and you can't see them.

By the same token, a meat sauce could have pine nuts or peanut oil.
That doesn't mean a nut-allergic child can't eat spaghetti sauce, but you should ask. You may feel silly, but it might save you a trip to the ER.

Simple, unsauced, grilled foods are usually safe. Check the menu and ask about ingredients to be sure.

The next two questions--ice cream parlors and buffets are usually considered off-limits by nut allergic people due to cross-contact risk. Cleaning the scoop is one thing--but then you have to wonder: is the ice cream in the tub contaminated by a previous scoop that had pecan or peanut butter ice cream on it? If it is, a new clean scoop won't help. Many times we buy our daughter a packaged (read the label!) treat at an ice cream place and that allows her to participate without having to deal with scoops, etc.

Next, buffets carry cross-contact risk again due to utensils. You know how people mix up the serving spoons at buffets. This can bring an allergen into food that would otherwise be considered safe. That's why many food-allergic people avoid them. If you find yourself in this situation, many times the chef will prepare a separate dish for the allergic customer.

If it's a buffet at a family home, you can ask to serve your child first, thus eliminating the cross-contact risk from serving utensils.

I realize I should do another post about all of this stuff because I'm sure you're not the only one with questions! Thanks for the inspiration. :)

Also, you say your're getting a new allergist. Please be sure to go over dining out protocols with them--I've gotten a lot of good info from our doctors about this topic.

Dining out can be done--getting used to the precautions and knowing what questions to ask is half the battle!