Dealing with allergic LOs as they become aware they're different

[bstandlee]

DS is 29 months and is definitely becoming aware that he is very different from everybody else because of his allergies (gluten, dairy, corn, soy, most nuts).

How did you explain to your children about their allergies and how did you help support them at social gatherings (did you limit yourself to only foods they can eat for moral support?). It was ok when I was nursing because I was forced to eat just like DS. I'm having a lot harder time with self control now that he's weaned though Do you have your whole immediate family eat according to your LO's allergies or do they always have different food than you?

[kjbrown92]

We always said that there was happy food and not happy food. The foods that she couldn't have made her belly unhappy (that was simplistic obviously but all she needed to know). We don't all eat the same because DS and DD2 have different food triggers, and I also have one that they don't have, so it would be a small list of foods if we were all to only eat what everyone could have. However, I make dinners that appease everyone. So for tonight we're having fried chicken (DS can't have), broccoli (everyone can have), a veggie plate with cucumbers, carrots, and celery (DS can't have the carrots), and probably a hamburger for DS. On the day we have beef, which DD2 can't have, I may make rice (which she can have but DS can't have), and a shared veggie, and maybe a fruit plate. So that I'm not making completely different meals for everyone, but I am making something that everyone can eat. DS is 9yo and has been doing this off and on (we kept thinking he outgrew things, then he'd change symptoms) since birth. DD2 is 4yo and has been doing this since 13 months old. I've also been avoiding gluten, dairy, soy, and corn for the last 15 months, so I can eat more than they can, but I do avoid alot of the same things. When we go out to malls, or fairs, or whatever, DD2 has an ID bracelet that says "do not feed -- allergies". There are too many to list, so I just make it generic.

[bstandlee]

I like your "happy" and "not happy" food explanation. That's very concrete (and can apply to unhealthy food even if he may not react to it!).

I also love your allergy bracelet. I have never thought of that. I'm always paranoid when I leave him in the nursery thinking (did I remind them? do they remember?). That would alleviate any uncertainty.

Thanks for your response!

[kjbrown92]

I wish I could remember where I got mine. They had them in pink and blue. And they're velcro. They said ID or something on the outside, but there's a waterproof tag that you write on the inside (we've kept them on them in the pool and at waterparks), so we usually have their name, my name, my cell phone, and the "allergies... do not feed". But they give you a few so you can put other people's names on them if someone else is caring for your child or anything.

[FairyRae]

Ds is free of gluten/dairy/soy and corn. I've always tried to make substitutes of the foods we used to eat, and of whatever foods are being served at parties we go to, etc. I'm still nursing, so ds and I eat the same foods (he's 2.5). We also have 'daddy's bread' and 'River's bread', 'daddy's milk', 'River's milk' etc. He knows that he has his own food that he and I share. When he has asked about foods others were eating I've said that those foods could "hurt your tummy." And then I usually offer something the same or similar to him. He has always been ok w/ this.

I don't want him to feel like he is missing out on anything, so I work really hard to make subs for everything others eat around him, which does involve lots of planning! (ETA: I am more choosy about which social functions and outings we go to for this reason, but I think it has been worth it!) He is really flexible though and even if I don't have exactly what someone else has, he is usually open to accepting a substitution. He also started saying "hurt my tummy?" about foods he was interested in trying, to make sure the food was something ok for him to eat.

I am also really willing to help him get what he wants (esp foodwise)--so if he wants cookies, and we don't have any made, if we have the time (which we usually do) I'll say "let's make some", etc. and we do. I honestly don't think he ever feels like he's missing out, or that he's too much different from others b/c he seems to eat what others are eating--his food looks very similar to others' food. He's still only 2.5, so I'm not sure how he'll feel in the future about all this. I do plan on supporting him if he wants to try the foods he is sensitive to in the future--he has no anaphalactic allergies, just sensitivities (which can cause painful rashes, but nothing life threatening in the moment.) I found this story very helpful when first thinking about these kinds of issues which are so complex!

I'm watching this thread w/ interest!

[earthmama369]

We also have a lot of friends with food allergies, so the kids are used to being able to eat things their friends can't eat, and not being able to eat things their friends can eat. We've always explained it as "Different people can eat different things. These foods make your body feel sick. That doesn't mean everyone feels sick when they eat them. This food makes your friend feel sick. You've eaten this food for years and have felt fine." It's their norm and it hasn't really been a problem yet.

[earthmama4]

When DS1 was in 6th grade he had to fill out a biography page for a project all about himself and under "What makes you unique?" he wrote "I have asthma and food allergies." I was so, so sad that that was the first thing to come to mind when he thought of himself. He is bright, funny, talented, creative, fiery, but he didn't think of those things.

In my zest to make sure he was safe, I am sure that one of the first things I told people about him, teachers, his friends' parents, church leaders, sports coaches, basically anyone he was left with, "A has asthma and food allergies, please don't feed him ABC and if he starts showing signs of XYZ then you need to..." etc. In the first week of school I would often do a presentation in his class with the video Alex the Elephant Who Was Allergic to Peanuts video (from the Food Allergy Network) and discuss food allergies with the kids so they could be a support to DS and keep him safe rather than tease or unknowingly share their lunch and make him sick. Of course adults needed to know, and the kids needed to know too since he had an accidental exposure/ana reaction about once a year at school despite our best preventative measures. Others needed to know because his allergies were life-threatening.

But if I had to do it again I would do what I could to avoid having him define himself by it. I am not sure how, but I would sure try. I would definitely keep the allergy talk out of introductions and only on a need to know basis. And I would keep it short, sweet, to the point, and then move on to the other great things about him.

[CuckooMamma]

Our two girls are 8 and 4 now. We've known of their allergies/sensitivities since they were infants. With our oldest, we had a period of time where we would let her have a little of her allergens, and that really backfired. After our second was born, and we discovered all her allergens (more than we had picked up with our first), we eventually pulled all the same foods from dd1.

Dd1 had begun throwing horrible tantrums which we had attributed to having a new sibling. Once we pulled all the allergens, life was completely different. She was 4.5 at the time and remembers eating wheat and tasting certain cookies and cake. Maybe once every 9 months or so I'll let her cheat with something small - a bite of a cookie or cake. We always pay dearly and wonder what we were thinking. As a young child her moods were not effected as much. I would just show her the red spots on her face or she would get the hiccups. All little physical signs that I would point out to her. At 4.5 it became much more mood-based, and was so distressing to her that it made quite an impression.

DD2 has always manifested with mood swings and anger. We'd just talk about how it didn't make her feel good/happy when she ate things she's allergic to. Also, she has always gotten terrible foot cramps. Again, this was an easy thing to remind her of as it caused her such distress, crying and crying through the night.

My girls do feel very different from others. My way to support them is to eat the same diet that they do and talk about how healthy we are because we eat the way we do. We've seen others who appear to be manifesting signs of an allergy to food and talk about how we would not want to be that person.

We eat an incredibly restrictive diet. No corn, dairy, grains other than rice, egg, nuts, soy. The only fruits they can eat are apples and grapes and cooked tomato. Some veggies are okay, some not. Cinnamon, bay leaf, oregano are out. We're all allergic to garlic but I just can't cook without it all the time, so just minimize it.

Our older daughter isn't allergic to everything the youngest is, but I don't feel that eating differently from each other leads to a happy outcome. I find it incredibly difficult when dh has something yummy in front of us, and I'm an adult. We talk about how he eats differently from us, but it still bugs them and I can understand that. Our youngest nurses minimally now, and I also find myself cheating where I couldn't before. I end up feeling miserable, but sometimes just can't resist a cookie :-)

We don't have substitutes for most of the goodies that others eat. I think that's a factor in the girls feeling so different. I guess that I feel the best way to support them is to eat like them. I also use diversion in social situations. Sometimes we can slip away to play after we've sung happy birthday and not have the girls sit at the table while everyone else eats their cake and they eat a fruit roll-up. While they love fruit rollups, they just don't compare to kids oohing and ahhing over cake and icecream.

I think it's made my girls have an inner strength that they wouldn't have had otherwise. They're also very conscious of nutrition and how their bodies feel. They've each come to me and said, "I think I might be allergic to X because I don't feel so good when I eat it." I think that's just great and try to focus on how wonderful it is that they're aware of their own health.

[kjbrown92]

I also try hard to give them "treats" though not the same thing as everyone else has. We also talk about healthy food, and my kids notice that they don't get sick as often as their friends, and if they do, it doesn't last as long, and I tell them that it's because we eat healthy foods. That being said, I go to www.naturalcandystore.com and I get them each a candy that they can have, and on special occasions, they get them (like you sat still for the hairdresser, good job, you get a piece of candy). DD2 (4yo) when in the sandbox, will make a "cake" and then she'll say to the kid next to her, "Can you have cake?" And before sharing any real food, she always asks if they can have it. We also have discussions with DS, 9yo, about how things "could be worse". For instance, he doesn't have celiac (which our friends' two children have), so I say there is a chance that you'll outgrow yours. They won't. Those same kids also have diabetes, so I say that every person has different things, and this is ours. We went to a birthday party and they were cutting the cake, DD2 looked at me and asked what she could have. I said, "a rice cake" (blah!) and she said, "Yeah, I can have cake!" and she danced around. Hello? It's a rice cake. But for her, it works. But I make them brownies, I make them cupcakes, ice cream, taffy, whatever I can to make them feel like they're not missing out. And I also have to remember to get treats for DD1 (12yo) because sometimes she feels like I ONLY make special things for the other 2. No doubt about it, it's tough, but we do what we have to to make our kids happy and healthy.

[Masel]

My DD is almost 4 and I'm constantly amazed that she can advocate for herself when it comes to her alleriges. She'll ask an adult who offer's something "Is that Maggie Safe?" I would have been too scared to challenged an adult when I was a kid. In hearing her talk with other kids she does lay it on a little thick. She'll say "If I touch that I'll DIE!" (That's her inner Drama Queen coming out. I'm very straight forward about her reactions. "That can cause upset tummy. That gives you a rash." etc)

I try to make food we all can eat but there are some family favorites I can't/won't give up. Then we'll substitute something similar.

I try very hard not to ask family and friends to change their recipes. For one thing they often get stuff wrong or they go to the effort and D won't eat it anyway. It really alienates people when you suggest recipe changes. I just want to know exactly what is in the food. My family has gotten good at saving labels and boxes so we can check ingredients list. If heading into an unknown food situation we'll bring a cooler with some safe stuff for her.

We go on an annual camping trip. When DD was about the OP's age I made a tag to pin on her clothing that said "Please don't fee the Monkey. I am allergic to ...." On the back it had our contact information. I used printable iron ons. You can also get printable fabric. I was going to just make stickers but at that age she just would have pulled them off. I did'nt want to use the bracelets either since she tends to have ezcema on her wrists anyway.

[bstandlee]

FairyRae, that was an inspiring link, thank you!

KjBrown92 thanks for the link to the natural candy store. I wasn't aware of it. I'll have to get some treats for Christmas when we go to visit all his cousins who eat lots of candy.

It sounds like most of you point out that almost everybody has things they can't/shouldn't eat to be healthy (some people are healthy, some aren't). I also am inspired to help DS start becoming aware of how he feels after he eats something. For now I just say that it makes his tummy hurt. It will be interesting to see as he gets older and is able to better explain how food affects him.

I guess the underlying point seems to be that yes, we get left out of some things because of the food DS can't eat or we choose not to eat because of health reasons, but ultimately we're much better off because of it! DS's diet really forces us to feed him much healthier than the mainstream child's diet.

Thanks for all your responses. It's very encouraging and inspiring to hear from so many other mother's who have been dealing with this for so many years with your children!

[lnitti]

I was amazed when my 25 month old dd told a 3 year old at his birthday party that she didn't want the cheese he was offering her off of his piece of pizza and that it has dairy in it.