Has it always been like this?

[Formerly SK]

May 24, 2012 9:05:13 GMT -5 saveinla said:

My cousin's son has the extreme allergies - he cannot get near anything made with milk or nuts. When he was less than a year old, they tried testing him with putting milk near his nose, but he had to be hospitalized in the ER, it was that bad. He learned to not eat anything from outside the home. When he goes to play dates, he either takes his own snacks or does not eat. He tells people that he will not eat anything that his mom has not vetted and only stays overnight with one kid who he has grown up with. He is 11 years old and the allergies have still not gone down.

I have a friend whose DD is severely allergic to eggs. Not just eating - she can't TOUCH anything that was processed in a facility that also processed eggs. She gets reactions from the weirdest places (think public water fountain). A dog licked her and she broke out in welts...turns out the dog had just eaten and dog food is made in a facility that also processes eggs. The DD is only 4, and they are praying she gets strong enough that the allergy is only to ingested things. Otherwise I don't think the little girl will be able to attend school. As it is they rarely let her out of their sight and they seem to race to the ER all the time. I really feel for my friend. It has completely changed their lives.

[GRG a/k/a goldenrulegirl]

May 24, 2012 7:14:34 GMT -5 skubikky said:

May 23, 2012 15:10:02 GMT -5 @athena53 said:

Thanks for your perspective. I just about choked at the (I hope) joking suggestion on Page 1 that you feed the kid a little of the supposed allergen to see if the parents are lying. In our area one teenager ended up in a coma after some classmates opened up Reese's Peanut Butter cups near her.

It's stands to reason then, that if someone is unfortunately that deadly sensitive to something, eventually they'll be exposed to it if they're out in public. What happens if you're on a plane or a train? Out at a restaurant? At a business meeting? Anywhere you might go in public could be lethal.

First, a little bit of background: because there are no cures yet for life-threatening food allergies, and because we still don't really know why and how they develop, and because different families are on different places on the learning curve and the journey of life, I want to stress that DIFFERENT FAMILIES HANDLE FOOD ALLERGIES DIFFERENTLY. There is NO ONE APPROACH. And, yes, food allergies can be lethal.

*My family* chose to eliminate the allergens entirely from our home. Our home is a safe space for my kids and they know it and can trust that it is. That means the entire family had to change how it eats, how it cooks and bakes, how it shops, what we serve guests, what foods we can allow guests to bring into our home, etc. Make no mistake: shopping, cooking and baking at home for kids with life-threatening allergies IS still hard, and so I know I run on a certain constant level of anxiety. Parents of kids with food allergies have to be constantly vigilant, constantly aware, and plan, plan, plan. (I probably get an hour or two reprieve each night after I've checked on them in the wee hours of the morning and finally allow myself to fall deeply asleep.)

And, then, your child goes out into the world whether it is a playdate, school, sleepovers, visits with extended family, jobs, Cub Scouts, youth sports, church...

After a lot of thought, anguish, anxiety, and fear I finally realized that, as much as I truly want to keep my children in a bubble of safety, that would ultimately be a life-long tragedy. Life is to be lived. But, life is full of risks -- for everyone. Some we can eliminate, some we must simply avoid, and some we simply have no control over. For me, the VERY BEST thing I can do as a parent for my kids is teach them how to deal with the risks food allergies present so that they can move in the wider world safely, and then when they're ready, let them fly.

I've spent years talking to them about their allergies, teaching them to read ingredients and to know the different names for their allergens, to plan ahead and have snacks with them or a Plan B, to follow the family mantra (when in doubt, go without), to focus on the activity or the experience rather than the food, to ask restaurant employees about the ingredients and preparation methods of the food they want to order, to cook for themselves, to always wash their hands before eating or to eat with a napkin or clean, disposable utensil, to advocate, advocate, advocate. I am an optimist by nature albeit not naive or in denial, so we really try to make most invitations "happen" using our many strategies. But, there have been invitations we've simply had to turn down outright because there weren't sufficient or reliable strategies to mitigate the risks. We also attend an annual food allergy conference designed for, and intended for, teens every year. The kids attend sessions at the conference with speakers that include kids who have made the terrifying leap from high school to college to studying abroad to the top food allergy researchers in the country who come and spend time talking to the kids and truthfully answer the kids' hard questions. (The parents have similar sessions in another part of the hotel to keep us constructively occupied and allow the kids to own the experience.)

Finally, at the risk of sounding callous but wanting to put my kids' food allergies into perspective for them, I remind them regularly how blessed they truly are in the scheme of things and how manageable food allergies can be with the right attitude, constant awareness, and planning.

And, soon, far too soon, I will have to step back and hope and pray for the best. I might secretly want to hold them close and hover over them forever, but I would never, ever tell them that or do that. They have to assume the risks of their own lives, just as any emerging adult must. To not let them move in the larger world would be a travesty and a tragedy, IMHO.

So, to answer your question, yes, everyday life for people with food allergies is potentially more lethal. That's why some of us are PITAs or even militant about our allergies. ;D There are strategies we can use to keep us safer, but the risks -- and the constant current of anxiety -- are never truly eliminated. Some choose to live limited and restricted lives because of the risks of unintended exposure to allergens out in the world. That is their choice. Others choose NOT to let their food allergies (or diabetes, or epilepsy, or blindness, or deafness or any other challenge) define who they are and live a fuller life with the understanding that life is full of all kinds of risks anyway (falling space junk, nuclear meltdowns, getting hit by a bus, serial killers posing as internet friends, etc.).

Neither approach is right. Neither is wrong. Whatever works for each individual...

[Deleted]

May 24, 2012 9:04:17 GMT -5 @beerwench said:

I would have assumed they were using the cheap syrup substitute -- do you know how much it would have cost to use real maple syrup??!?

if your kids need to watch their diet, why would you allow them to eat food at a Santa breakfast?

[Angel!]

May 24, 2012 9:17:31 GMT -5 @moneyjenny82 said:

May 24, 2012 9:04:17 GMT -5 @beerwench said:

I would have assumed they were using the cheap syrup substitute -- do you know how much it would have cost to use real maple syrup??!?

if your kids need to watch their diet, why would you allow them to eat food at a Santa breakfast?

No kidding! And why would you assume they were using real maple syrup instead of corn syrup?? If your kid can't eat corn syrup, then it seems to me the first thing you would do is ask about the syrup.

[Angel!]

May 24, 2012 9:12:14 GMT -5 @beerwench said:

However, I still find the "spicy food allergy" ridiculous! If the kid is allergic to peppers, say he's allergic to peppers (we had a house guest last night that is); if it's a certain spice then name the spice. Besides, I don't think anyone is going to serve habanero salsa to children anyway.

That one is pretty stupid. Although I am guessing it is something more along the lines of bad heartburn or indigestions if they eat spicy foods, not a true allergy.

People often blur the lines between a real allergy and an intolerance and something that just makes them ill. It is annoying when you have a real allergy though because then you get people that say "my kid is allergic to dairy too, but a little butter on her corn doesn't make her sick". Um, if that butter didn't make her sick, then she doesn't have a true dairy allergy, I promise it will still make me sick.

Calling your kid allergic when they aren't puts kids with true allergies at risk. They assume if Pete & Sue are both allergic to milk, and Pete ate X, then Sue will be fine eating X. What they don't know is Pete's parents overplay his problem & he is just lactose intolerant & Sue is now at risk of being fed X by people who don't understand their problems are very different.

[Deleted]

Angel!

[GRG a/k/a goldenrulegirl]

May 24, 2012 9:30:26 GMT -5 Angel! said:

May 24, 2012 9:12:14 GMT -5 @beerwench said:

However, I still find the "spicy food allergy" ridiculous! If the kid is allergic to peppers, say he's allergic to peppers (we had a house guest last night that is); if it's a certain spice then name the spice. Besides, I don't think anyone is going to serve habanero salsa to children anyway.

That one is pretty stupid. Although I am guessing it is something more along the lines of bad heartburn or indigestions if they eat spicy foods, not a true allergy.

People often blur the lines between a real allergy and an intolerance and something that just makes them ill. It is annoying when you have a real allergy though because then you get people that say "my kid is allergic to dairy too, but a little butter on her corn doesn't make her sick". Um, if that butter didn't make her sick, then she doesn't have a true dairy allergy, I promise it will still make me sick.

Calling your kid allergic when they aren't puts kids with true allergies at risk. They assume if Pete & Sue are both allergic to milk, and Pete ate X, then Sue will be fine eating X. What they don't know is Pete's parents overplay his problem & he is just lactose intolerant & Sue is now at risk of being fed X by people who don't understand their problems are very different.

Thanks, Angel. Eloquent and appropriately pointed.

[GRG a/k/a goldenrulegirl]

One quick follow up: YDS's 8th grade class just did the Washington D.C. field trip thing. In our middle school, the trip is curriculum-based, not just a sightseeing tour, so is pretty much mandatory. The kids eat their meals at food courts around D.C. because really only food courts can handle serving 265 kids and adults at once and offer a sufficient variety for most picky eaters. However, food courts aren't very allergy-friendly. So, YDS and I did our research and tried really hard for a way to make the trip happen for him.

Our strategy? I went on the trip, stayed at a different hotel (Residence Inn which offers full kitchens in every room) and cooked each day for him. I dropped a cooler full of food for the day off to his teacher every morning around 5:45 a.m. in his hotel lobby and then went and did my own thing for the day. YDS also had a large baggy full of safe snacks for each day in case the cooler ever got lost or mislaid.

Was it a PITA for me? Yes. Was it expensive? You bet! YDS's trip cost us $2500 while every other student paid about $900.

But, aside from saying good bye as we boarded the train for the ride down to D.C. (I sat in a different car) and seeing him 4 days later when we arrived back home, YDS had as much of an independent experience as possible and was really, really happy with the trip and his relative freedom (from food anxiety, from hunger, from Mom, LOL.)

In time I hope he can do trips like this on his own. But, this was huge for him to be able to be as independent as he was on this trip. Well worth the trouble and expense, but also a prime example of what families with genuine food allergies go through for everyday experiences other kids enjoy without another thought.

So, I KNOW what a PITA it is for families without food allergies to be asked/forced to suddenly accommodate them. But, don't think for a minute that the families with the food allergies aren't faced with far more challenging issues. Please try to cut us a little slack. In return, I am offering some of the homemade goodies I have mastered that will leave you in awe at the lack of eggs, etc. and asking for more. ;D

[zibazinski]

[Deleted]

what about your other kids?

[Deleted]

Some of this may be not just the increase in incidence of allergies, but a cultural shift on snacking. We're not only feeding kids snacks more now, but many places are turning it into a communal thing. When I was growing up, the only time I ever remember having a snack was mid-morning at preschool (and the preschool provided the snack which was usually some cheap, inoffensive carb like saltines) and then later after elementary school when we got home.

People often blur the lines between a real allergy and an intolerance and something that just makes them ill. It is annoying when you have a real allergy though because then you get people that say "my kid is allergic to dairy too, but a little butter on her corn doesn't make her sick". Um, if that butter didn't make her sick, then she doesn't have a true dairy allergy, I promise it will still make me sick.

I'm guilty of this. It's easier to just say that DH has a food allergy than explain that DH has an autoimmune disorder and vasculitis which causes a leaky gut and funky kidney functioning.

[zibazinski]

I'd say the same thing. It's nobodies business the details of your children's health issues. They are allergic and that's that. Think HIPPA!

[Angel!]

May 24, 2012 9:49:56 GMT -5 GRG a/k/a goldenrulegirl said:

In return, I am offering some of the homemade goodies I have mastered that will leave you in awe at the lack of eggs, etc. and asking for more. ;D

If I actually explain what ingredients I have to watch out for & how common they are in foods, I often get the question "how do you eat?". Cook my own food ;D

Another common response is "OMG, I would just die if I couldn't eat chocolate (or ice cream, donuts, whatever)". I understand the surprise & wondering how I function without these basic foods, but seriously, do walk up to someone in a wheelchair & say "OMG, I would just die if I couldn't walk". Just awesome to imply that my entire existence is meaningless due to my allergy, really makes a person feel good

[muttleynfelix]

The problem is that little kids do pick up food off the ground. they also get food like peanut butter all over themselves and don't usually wash their hand afterwards just lick it off themself. Plus other little kids are also apt to touch each other and then put their hands in their own mouth.

My son is terrible about this. He's eaten dead worms, tried to eat live beettles, etc. But he is a kid that isn't in daycare, so my hope is that all of this licking the carts at walmart and sucking his thumb while picking his nose is helping his immune system develop.

My youngest niece has an intollerace/allergy to soy. She gets really bad stomach cramps and diahrea. She is 4 and her parents have learned coping strategies that help, but things family funerals have been difficult for them to navigate all the food and wondering what was made with maragarine (soy) and what was made with butter (safe). Over the last couple years when I've been around her, I have definately tried to learn what is safe for her and what isn't. We are taking a group weekend get away to a cabin on Father's Day weekend and we are trying to plan the food. We are trying to t least the keep main dish soy free and have some fresh fruits and veggies. It is a very different thinking than the way my sister and I normally meal plan. My brother and his wife are use to it and my mom babysits my niece often enough that she gets it too. That said, my dad doesn't understand what has soy and what doesn't. We were at my Great Uncle's funeral and my dad nearly let E eat some lunch meat (typical lunch meat has soy fillers). I told him "Dad, you better ask my brother if she can have that". She couldn't. E's big sister is 8 and also understands what her sister can eat and what she can't. So, that is a big help.

All that said, my SIL and brother would never expect a playdate host to do snacks based on E's allergy. They would bring her a snack that she could eat.

[Deleted]

Just awesome to imply that my entire existence is meaningless due to my allergy, really makes a person feel good

The funny thing is that when something makes you ill repeatedly you tend not to want it!

My son is terrible about this. He's eaten dead worms, tried to eat live beettles, etc. But he is a kid that isn't in daycare, so my hope is that all of this licking the carts at walmart and sucking his thumb while picking his nose is helping his immune system develop.

[Angel!]

May 24, 2012 10:04:51 GMT -5 @anne81 said:

I'm guilty of this. It's easier to just say that DH has a food allergy than explain that DH has an autoimmune disorder and vasculitis which causes a leaky gut and funky kidney functioning.

I get it is easier. It is a little different for a grown adult that isn't relying on your explaination so that teachers/other parents don't feed him certain foods. Sometiems I pass off my food allergy as simply "I'm not hungry" because it is easier than getting into an explaination of why a dairy allergy means I am not going to eat food X. Often because then they counter with the logic, "it is just a donut (or whatever), donuts don't have milk in them" & then I have to explain further why the donut almost certainly does have dairy in it. It just isn't worth it to explain why I, as an adult, am choosing to not eat something.

What I don't like it when a parent passes their kid off as having a specific allergy & making other adults work around that if it isn't a true allergy. My kid is soy intolerant & I would never try to pass that off as an actual allergy to his daycare or other adults caring for him. It just isn't the same problem & does not come with the same risks.

[Deleted]

My kid is soy intolerant & I would never try to pass that off as an actual allergy to his daycare or other adults caring for him. It just isn't the same problem & does not come with the same risks.

I understand. It gives people the impression that allergies are not as serious as they are. DH is lactose intolerant, not allergic, so he'll vomit like crazy but he's not going to die.

[Angel!]

May 24, 2012 10:22:54 GMT -5 @anne81 said:

My kid is soy intolerant & I would never try to pass that off as an actual allergy to his daycare or other adults caring for him. It just isn't the same problem & does not come with the same risks.

I understand. It gives people the impression that allergies are not as serious as they are. DH is lactose intolerant, not allergic, so he'll vomit like crazy but he's not going to die.

Exactly, while they do need to watch what they feed him, they need to know they aren't going to be rushing him to the hospital, just dealing with a kid that will puke for several hours.

I also don't want parents to base their idea of what is safe food for kids with soy allergies on what I feed DS. He is becoming more tolerant as he gets older & we are to the point where I can feed him many things he couldn't eat 2 years ago, stuff that does have soy.

If I say he has an allergy it will leave some people with an idea that allergy = throwing up if you eat too much of a food. No, an allergy means an immune response that involves swelling that in bad cases can mean anaphylactic shock. Way worse than anything my son risks if someone gives him soy.

[Formerly SK]

May 24, 2012 10:22:54 GMT -5 @anne81 said:

My kid is soy intolerant & I would never try to pass that off as an actual allergy to his daycare or other adults caring for him. It just isn't the same problem & does not come with the same risks.

I understand. It gives people the impression that allergies are not as serious as they are. DH is lactose intolerant, not allergic, so he'll vomit like crazy but he's not going to die.

"Allergy" does not necessarily mean "worse consequence." It means there is a histamine response. My son is allergic to eggs. When he was a toddler, if he touched the outside of an egg shell and then touched his arm, he'd get welts on his arm. At his last skin test (7yo), his response has improved so much he can eat anything as long as eggs are not in the top three ingredients. That doesn't make him "egg intolerant" it just means his ALLERGIC response isn't as severe. We still carry antihistamine with us (vs the epi-pens we used to keep).

Now, my son's allergy is no way comparable to my friend's DD who still can't touch things made in a factory that makes things with eggs, but they are both still technically allergies. We both see pediatric allergists for our care.

I think people need to stop with the second guessing. If a parent says their kid can't eat (insert food) then respect what they're saying and move on. In the end, whether it is an allergy or intolerance the result is still the same: avoid the food.

[Deleted]

If a parent says their kid can't eat (insert food) then respect what they're saying and move on. In the end, whether it is an allergy or intolerance the result is still the same: avoid the food.

And I will (even for those that sound ridiculous .

[973beachbum]

May 24, 2012 10:29:41 GMT -5 Angel! said:

May 24, 2012 10:22:54 GMT -5 @anne81 said:

My kid is soy intolerant & I would never try to pass that off as an actual allergy to his daycare or other adults caring for him. It just isn't the same problem & does not come with the same risks.

I understand. It gives people the impression that allergies are not as serious as they are. DH is lactose intolerant, not allergic, so he'll vomit like crazy but he's not going to die.

Exactly, while they do need to watch what they feed him, they need to know they aren't going to be rushing him to the hospital, just dealing with a kid that will puke for several hours.

I also don't want parents to base their idea of what is safe food for kids with soy allergies on what I feed DS. He is becoming more tolerant as he gets older & we are to the point where I can feed him many things he couldn't eat 2 years ago, stuff that does have soy.

If I say he has an allergy it will leave some people with an idea that allergy = throwing up if you eat too much of a food. No, an allergy means an immune response that involves swelling that in bad cases can mean anaphylactic shock. Way worse than anything my son risks if someone gives him soy.

First of all my son was lucky enough to grow out of his allergy so I don't have to deal with this anymore.

I used to almost NEVER let him eat anything I didn't prepare for just this reason. I say that he was allergic to dairy and that he was not to eat anything but what I gave him. I then have to go to the bathroom and a supposed adult is screaming at me to come out because he is breaking out all over. I then have to run out of a bathroom with my pants falling down to shove liquid benedryl down his throat before it closes. When I asked how he got whatever they said they gave it to him because they knew that I was confused when I said he was allergic and that he was really just lactose intolerant.

I also almost punched a few people for just this. Eventually I just resigned myself to just never being able to pee by myself.

[Angel!]

May 24, 2012 10:31:19 GMT -5 Formerly SK said:

I think people need to stop with the second guessing. If a parent says their kid can't eat (insert food) then respect what they're saying and move on. In the end, whether it is an allergy or intolerance the result is still the same: avoid the food.

See, I think it is important to know what level of response we are dealing with if I am expected to work around someone's allergy. Can I bring peanut butter sandwiches & just not give one to the kid that is allergic. Or do I not only need to avoid any sort of nuts, but I need to make sure I purchase a fresh jar of jelly for the sandwiches (to ensure no one every put a knife that was used in peanut butter into the jelly jar) & make sure it wasn't produced in a factory that also has nuts. The latter is way overkill if it turns out that he only needs to avoid foods with peanuts as the primary ingredient. And personally, if my kid's sensentivity is the latter, you aren't feeding them anything because there is just too much risk.

Maybe it is just because it was how I grew up - but unless you are highly allergic & could die just by being around peanuts, people shouldn't HAVE to go much out of their way to feed you. If I went to a birthday party as a child, I just didn't eat. There was no expectation that they make a cake & meal specifically around me & my allergy. Certain people did go out of there way & it was great, but I didn't have ill feelings towards anyone that served ice cream at their party & I couldn't eat it.

ETA - and once I was about 5 I knew better than to eat anything my parents didn't approve.

[973beachbum]

There is a girl in my DD's band who is allergic to peanuts but not deadly allergic. the boosters will ask if people can not put peanuts in the food but if they do just to mark it. She can sit at a table with people eating peanut butter no problem.

It is nice to know that when we are baking for the band. She is also now way old enough to understand what she can and can not eat. The one nice thing about them finally being a teenager! ;D

[Deleted]

When I asked how he got whatever they said they gave it to him because they knew that I was confused when I said he was allergic and that he was really just lactose intolerant.

OMG 97!
I would never go against a parent's wishes for their kids! I figure they've got their reasons (and they don't have to tell me what they are) and I will abide by their wishes.

My non-life threatening example: I get the neighbor's DD off the bus a few times a week and he told me that if they watch TV he doesn't want her watching any "stupid comedy" shows ala SpongeBob or Fanboy & Chum Chum. So they don't watch them (even though DD tried to get me to turn it on right after she heard it was verboten. DD's 6 going on 16 ).

[Angel!]

May 24, 2012 10:39:56 GMT -5 973beachbum said:

I then have to go to the bathroom and a supposed adult is screaming at me to come out because he is breaking out all over. I then have to run out of a bathroom with my pants falling down to shove liquid benedryl down his throat before it closes. When I asked how he got whatever they said they gave it to him because they knew that I was confused when I said he was allergic and that he was really just lactose intolerant.

OMG, how awful. I might have punched somebody over that. I wonder if they were secretly trying to prove your kid didn't have allergies. People often accuse me of not being as allergic as I claim - like they know what I deal with.

I was I think 3 & at the neighbors. They knew I had an allergy & that they shouldn't feed me, but also knew my parents gave me saltines at home. So, they fed me some saltines. Well, not all saltines are created dairy-free & I got really, really sick.

One of my earliest memories

When you are that allergic to foods you learn really young not to trust anybody outside of your parents on what you can eat.

[Chocolate Lover]

I also almost punched a few people for just this. Eventually I just resigned myself to just never being able to pee by myself.

Almost?? You have a remarkable amount of self restraint, it might have been a reflex action for me if someone had just tried to kill my kid.

I don't mess around with someone's allergy if they let me know but unless it's easily dealt with I'd prefer the parents do what all of you did/do and provide the kids food for them. I don't want to unintentionally harm another child because I'm not well versed enough to know what all to avoid.

Lucky me, I'm antisocial enough I don't have these group feedings often

[Deleted]

[973beachbum]

Beer it was scary with him! I felt like a crazy person living in fear of my kid eating a cracker! What would MU say about that?

It is nice though that like most kids he did grow out of it. ;D I always wonder how much worse it was made by us taking so long to realize that he was allergic to dairy.

[973beachbum]

May 24, 2012 10:52:08 GMT -5 Chocolate Lover said:

I also almost punched a few people for just this. Eventually I just resigned myself to just never being able to pee by myself.

Almost?? You have a remarkable amount of self restraint, it might have been a reflex action for me if someone had just tried to kill my kid.

I don't mess around with someone's allergy if they let me know but unless it's easily dealt with I'd prefer the parents do what all of you did/do and provide the kids food for them. I don't want to unintentionally harm another child because I'm not well versed enough to know what all to avoid.

Lucky me, I'm antisocial enough I don't have these group feedings often

I actually used to volunteer to bring all the snacks. It was just way less stress on me and everyone else actually though I was being nice.

And the person in question was a family member so I was pretty sure that if I killed her it would have been a pretty awkward Christmas the following year.

[Deleted]

MU would tell you that the salt on the saltines is bad for you.