Sunday, May 20, 2012

Conditioning Our Food-Allergic Children

Thank you to everyone who supported my last blog post. I did not expect my opinion to be popular and was really touched by the support I received. ("Mom! There really ARE people in the world like me!")

However, as always, there were critics. The main criticism seemed to be: "we NEED horror stories in order to keep our children safe."


What we're talking about is conditioning. We all do it as parents from almost the day our children are born:

Say thank you, darling.
Don't wipe your snot on your hand! Use a tissue!
Quit hitting your brother!

(Well, o.k., some of you probably condition slightly differently than I do.)

Food allergy conditioning takes both positive and negative forms:

1. Avoiding food. No casual sampling at grocery stores. No unknown cake at parties. Smile politely and nibble the parsley at buffets. Get only a soda if your friends go to a restaurant. We teach our children to delay gratification every single day in a world filled to the brim with temptations. The question is: do all children have the same capacity for delaying gratification (i.e., avoiding allergenic foods)?

The video above documents the famous "Stanford Marshmallow Experiment" in which children ranging in age from 4 to 6 are offered a marshmallow. If they can wait until the researcher returns, they're promised TWO marshmallows.

About 70% of children tested do not eat the marshmallow. And  guess what  later in life, their ability to delay gratification correlated with higher SAT scores and general school success.

So what does this mean for us allergy mothers? Children can be conditioned to avoid foods/delay gratification. However, continuous reinforcement is required for many kids. Most will give up the Halloween candy if the promise of the toy they're trading it for is large enough and talked about enough, and if they have developed enough natural ability to wait. But a large percentage simply cannot wait. They are hard-wired to have more trouble. If you have one of these children, you're going to work twice as hard and twice as long at conditioning avoidance as other mothers, and there may be a genetic set-up that simply makes your child more impulsive, no matter what you do.

2. Checking ingredient labels. Read every label, every time. That seems so straightforward! So why do children so often turn that into "read labels when a food looks different"?

My mother, the clinical psychologist, tells me that this is a brain immaturity issue. Grouping objects ("I know all pretzels are safe") is the way they develop a manageable frame of reference for the world. However, that frame of reference is being continually refined. By kindergarten, most kids can group objects using two variables ("pretzels that are safe for me" vs. "pretzels that are not safe for me"). However, the sets and subsets of safe foods and ingredients can be very complex, meaning that children have a difficult time consistently grouping items until well into grade school ("Newman's Organic pretzel rods that are safe for me vs. Frito Lay RoldGold pretzel twists that are not safe for me).

Reading a label also requires a number of skills we don't even think about as adults. We know that ingredients make up foods, and that foods that look the same can have very different ingredients. We need to have the vocabulary and spelling skills to be able to interpret difficult ingredients. We need to understand grammatical rules of punctuation and grouping (e.g., "soy flour" vs. "soybean oil, flour"). We need to hunt for information that appears in different places, without dependable patterns. We need to consider somewhat esoteric factors ("was this chocolate manufactured in Europe where labeling rules are different?"). We may need to understand whether a food is regulated by one agency vs. another (such as the FDA/USDA division in the U.S.). We need to double-check our work.

So, in addition to conditioning our children to read labels, we also need to teach these skills sets, some of which are not fully in place until the teen years.

3. Carrying medication. A teen boy's pathological need to avoid carrying anything that looks even REMOTELY like a purse and a teen girl's pathological need to fashionably fit with her friends makes this one a project for all of childhood. It isn't just about forgetting. It's also about image, which means it needs to be renegotiated as the child's self image changes.

It seems like a good idea to get our children used to wearing their medicine on a belt or clipped pouch at an early age. But, social issues quickly creep in. Teasing about the "bulge", changing for jr. high gym class, fashion...all can make our kids toss our careful conditioning out the window.

We can look for the obvious opportunities to help our kids blend in. A set of medication in the school backpack is easy. A bag on the back of a bike is usually acceptable. An Epi in a coat pocket, or cargo shorts. But conditioning our children to always carry medication usually means conditioning them to carry it in the same way every time. That's where parents of teens run into trouble.

And, conditioning requires reinforcement. In the marshmallow study, kids get the marshmallow. When it comes to carrying medication, there is no marshmallow. Kids have to consistently do something that has no reward, and often has a social consequence from their perspective. It's easy to see why carrying meds becomes a flash point.

Interestingly, the best defense against risky behavior seems somewhat counterintuitive: arguing with your teen. A recent study showed that effective, give-and-take arguing with parents actually helps kids resist peer pressure. In situations where mothers continually reasserted their view and the teen backed down, the teens were later MORE likely to take risks than in situations where mothers listened to their teen's opinion and ceded some autonomy. In other words, teens who agree with their mothers the most are also the ones most likely to ditch their medicine bags once they leave the house.

I don't think there are any easy answers on this one. A bad reaction can help reinforce the need to carry medication, but that's a very dangerous method of training. Perhaps the e-cue epinephrine device (supposedly coming to market in November) will make a difference for our kids.

I suppose the point of this post is to question the practice of using anaphylaxis deaths as a means to reinforce conditioning. If you look at these three areas where conditioning is required, brain development and acquisition of skill sets is also required. No amount of fear is going to help a child learn the complexities of label reading, or learn to group object sets faster. And, as I pointed out in my post about exaggerating food allergies, constantly harping on death, a consequence a child is often developmentally unable to process, can cause a child to become desensitized and overly pessimistic.

We can make our kids feel helpless and hopeless with horror stories. Or, we can give them the training and conditioning they need to effectively manage their allergy, along with a positive outlook and belief that they can manage their allergy.

Isn't it time to limit the ghost stories to the family campfire? Much better to spend the time on label reading, appropriate avoidance and carrying meds so we can ALL safely enjoy the s'mores.

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  1. Fantastic points!

    I'm all kinds of interested in the e-cue epinephrine device...

  2. I certainly did not and do not advocate scaring food allergic children with stories of food allergy fatalities. I talk about food allergies with my son as little as possible and hopefully as often as necessary. I certainly don't use it as a motivator to follow the rules of how to stay safe with an allergy. I take a realistic look at how well he understands the rules (which are more complicated since he has non top 8, multiple allergies, and has had serious reactions when friends hands must have touched allergens and then touched something he touched to his face). He doesn't yet fully understand why we can't just go by label reading alone. It is confusing and complicated. I'm aware of his level of understanding and am passing over responsibility to him as he is able to take it but without the horror stories. I agree that children don't need that. At some point they should know that their allergies are potentially life threatening, certainly. The thing that sounded best to me for teens is rather than saying, 'you might have a reaction' say, 'think of how embarrassed you will be in front of your friends if you have a reaction'. I don't know. We will see what it is like when DS is that age. I see a lot of older kids carry epis in cargo pants. I hope they can make a smaller device. It would be nice to have one that was shaped like a credit card or could fit on a key chain get developed.

    It does sound like you read into my posts something that I didn't say. I would not support telling these fatality stories to kids to scare them into being careful. I do find it important to really make sure teachers and other school staff really understand why I'm asking for accommodations. I find that when I hold back on giving them a story they tend to take things less seriously and not get it.

  3. Gardengirl, you've mentioned now that you used death stories with Cookie Dad and with teachers and school staff.

    I don't know you. But I definitely see my younger self in you, and that's why I perhaps read too much into your posts. I think about you as I would have been when my child was that age.

    I am now probably ten years ahead of you with regard to telling these stories. It gets corrosive. I have difficulty with anxiety or I would not write this column. I really believe that much of that anxiety comes from telling those stories, over and over and over and over. The problem is that, each time we tell them to others, we can't help listening ourselves.

    The other thing I found is that people don't listen. They really don't. I used to think they did...but they don't have a frame of reference for the fear. They would write me off as an overly-anxious mother while giving every indication they agreed with me. I would only (occasionally) find out later, through the social grapevine, what they really thought.

    Maybe you're a better story teller than I was. Maybe people in your town are more compassionate and open. Maybe you're more resistant to anxiety. I don't know you, so I can't know these things.

    I can only tell you my own experience.

  4. Thanks for the reply.

    You certainly have experience that I do not yet with dealing with an older child. It sounds like you have done well with your child.

    I haven't always used stories. This past year I couldn't because my son had other issues and I didn't want to overload people with information. The other issues took time away from my usual presentation so I gave a much shorter FA talk to his teacher and new school staff than I have in past years and the school messed up more than ever! It wasn't until I went in and really explained the risk that they seemed to get it. I don't think telling these stories has to involve me actually talking or even thinking about them. I can give them an article and ask them politely to read it. I can even sit there while they read something very short. I have had people say to me, "Oh, I didn't realize it was so serious" after I do this. I think it is important. You are right, others do not fully get it no matter what we do. I want to ensure that whether they get it or not, think I'm crazy or not, that they follow the rules. But I do find relating a story to them that shows that this is real does help a lot. Pointing out why my son can't eat the group snack or why he needs certain accommodations to people who do not get it would be impossible at times without relaying stories of what happened in other cases where such precautions were not taken. I often try to keep those to actual experiences my son has had but some will think, 'well, those things turned out fine! Your son is fine!'

    There is a fine line. I remember his preschool teachers thought he was going to start having breathing difficulty any second and they would have to epi him any time and were constantly watching him the first weeks of school until I helped them to relax. I don't ever want any of his teachers to worry that way. I think I have come up with a good presentation that covers all the topics I need staff and teachers to know in as short a time as possible to make them feel empowered to take care of my son. I think I'm good at doing this after having done it many times now. I have asked some people and I don't seem to come off as crazy or overly anxious. People tend to take me very seriously. I have had some think I was overboard but not usually. I think I come off as knowledgeable and serious. Like you, I can only go by my experience.

    I do know what you are saying. There is a horrible story of one fatality that I read that got to me so very deeply. I won't repeat it here but it took me to a very dark place that lasted for some weeks and I talked to a counselor about it. Usually stories are written and we feel a bit of emotional distance between ourselves and the people in the story but that story made me feel I was right there, watching the whole thing. It was horrific to me. I still can't let myself think of it fully. I do not read the fatality threads on message boards. I generally avoid thinking of this subject. I do get it. Anxiety is an important consideration in quality of life. I monitor myself for this. It is certainly a real concern.


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