Allergy and Asthma Source: “Mean GrownUps” and Psychological Support of Patients with Food Allergy

Having food allergy is a stressful thing, as is having any potentially life threatening disease. What can make it even more stressful is when your peer group and community don’t take you seriously. Shinga from BreathSpa for Kids and Allergic Girl from Please Don’t Pass the Nuts brought my attention to a recent article by Jean Warner in the April 19, 2007 New York Times titled “Mean Grown Ups” (full text on Please Don’t Pass the Nuts) about conflict between the parents of the food allergic kids and non-allergic kids, here’s an excerpt:

“There’s an absolutely horrifying article in the current issue of Child Magazine about the food fight now raging between parents of children with life-threatening food allergies and parents of the allergy-free. The latter, apparently, have started to push back against “peanut-free” school regulations to assert their children’s natural right to eat whatever they darn well please.

The stories are downright chilling: One parent joked on a message board about having his daughter dress as “the Death Peanut” on Halloween. A North Carolina father at a parent-teacher organization meeting said he’d continue to send his child to school with peanut butter sandwiches and “tell his child to ‘smear’ the peanut butter along the hallway walls.” Another father sent his child to school with a “disguised” sandwich that had peanut butter hidden in the middle of the bread.”

All I can recommend is “Education, Education, Education”. As far as I know, there is no amendment in the constitution that states that any child has a right to a PB&J sandwich in school, particularly if it might cause the death of his or her classmate. This was the same issue that came up when they stopped serving the little peanut packets on airplanes. The airlines realized that it was cheaper and easier to switch to pretzels instead of having to make emergency landings whenever a patient anaphylaxed. Of course, the “mean grown ups” in the article might have said that peanut allergic people shouldn’t fly on planes because it restricts their right to eat peanuts while flying.

I have posted an excerpt from my chapter in the upcoming 4th edition of Food Allergy (Blackwell Science) which I hope will shed some more light on the matter, and I refer you to the excellent Food Allergy and Anaphylaxis Network which has a School Food Allergy Program to increase food allergy awareness in schools, pre-schools, camps, and daycare centers and a Kids site to help children deal with their situation.

Psychological Support of Patients and Families with Food Allergy

The first and most important step in the management of food allergic patients is obtaining an accurate diagnosis. Once the diagnosis is established, education of the patient and their family regarding avoidance of the allergic food and treatment of anaphylactic reactions can be conducted [1]. However, avoidance measures and vigilance required have been shown to diminish quality of life and increase stress levels, particularly for families of children with food allergy [2,3]. This may also be a factor in decreased compliance with proscribed measures and precautions and result in increased risk-taking behaviour, particularly in teens and young adults [4]. Recognition of these issues are often overlooked in the evaluation and management of these patients. Use of disease specific quality of life measures, such as the Food Allergy Quality of Life –Parental Burden [5], increases understanding of these factors and may aid in the development of improved treatment strategies.

Use of self-management support and education, similar to the model used in the management of chronic illnesses such as diabetes, may offer insight into how we can improve quality of life and compliance in food allergic patients. Patient education provides knowledge-based instructions in the hope that this will lead to behavioural changes and improved clinical outcomes. Self-management support is directed towards improving the patient’s ability to deal with their medical condition, including physical and social consequences and lifestyle changes. It goes beyond patient education to include processes that develop patient problem-solving skills, improve self-efficacy, and support implementation of knowledge in real-life situations [6].

References:
1. Munoz- Furlong A. Daily coping strategies for patients and their families. Pediatrics. 2003 Jun;111 (6 pt 3):1654-61.
2. Primeau MN, Kagan R, Joseph L, Lim H, Dufresne C, Duffy C, Prhcal D, Clarke A. The psychological burden of peanut allergy as perceived by adults with peanut allergy and parents of peanut allergic children. Clin Exp Allergy. 2000 Aug; 30(8):1135-43.
3. Bollinger ME, Dahlquist LM, Mudd K, Sonntag C, Dillinger L, McKenna K. The impact of food allergy on the daily activities of children and their families. Ann Allergy Asthma Immunol. 2006 Mar; 96(3):415-21.
4. Sampson MA, Munoz-Furlong A, Sicherer SH. Risk-taking and coping strategies of adolescents and young adults with food allergy. J Allergy Clin Immunol. 2006 Jun;117 (6):1440-5.
5. Cohen BL, Noone S, Munoz-Furlong A, Sicherer SH. Development of a questionnaire to measure quality of life in families with a child with food allergy. J Allergy Clin Immunol. 2004 Nov;114(5):1159-63.
6. Coleman MT, Newton KS. Supporting self-management in patients with chronic illness. Am Fam Physician 2005;72: 1503-10.

From: de Asis L, Simon R. Psychological Considerations of Food Allergy chapter, Food Allergy and Adverse Reactions 4th ed. Blackwell Science (in press)

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13 thoughts on “Allergy and Asthma Source: “Mean GrownUps” and Psychological Support of Patients with Food Allergy

  1. Cool new look.

    The unfortunate fact is that despite the good FAAN has done, they have caused major problems for those with less common food allergies. Their insistence on only focusing on the Top 8 has caused an increase in companies and institutions being unwilling to cooperate when you don’t list one of the Top 8. If you check out the Corn Allergy Forum, for instance, you will find numerous cases of companies sending form letters saying they do not have any of the Top 8 allergens and should be safe to consume! Further, when FAAN has been contacted about this they dismiss this as a minor problem – telling people to contact the FDA or USDA, often after that person had been directed to FAAN by those organizations. This phenomenon is not limited to just corn. Everyone I have spoken to with non-Top 8 allergies have run into this issue.

    One of the most psychologically devastating things about anaphylactic food allergy is the realization that you have no control in some exposures. You cannot trust what the corporations tell you about what is in their products due to non-existent labeling laws. No one with non-Top 8 allergies or celiac disease was surprised by the Pet Food recall. Our society is very centered on food. Family events are very stressful because often, extended family do not understand that the item really can kill you. Or they start assuming you “can’t be allergic to that” due to the focus FAAN has put on the Top 8.

    Now, don’t get me wrong, but the Top 8 are very important. The problem is that it has given companies and people a further excuse to ignore real allergies that can hurt people.

    Pax,

    MLO

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  2. Oh, one thing I did forget to mention in my haste (sorry about the grammar) is the fact that many friends and family refuse to interact with someone with food allergies because of the “inconvenience.” This is true even when the food allergic individual is willing to meet them half-way. If you can’t go someplace due to the aerosolization of a given food, and offer up an alternative, what other option do you have if that person is unwilling to bend?

    This is a very real phenomenon. Now, there are people of quality, and I know many, who have no issues with the food allergies and go out of their way to even try to cook for me. But, when I started having the really bad reactions, I lost a large part of my social circle due to their unwillingness to not concentrate on eating out or going to the movies. (Popcorn / corn allergy precludes either due to the prevalence of corn in EVERYTHING.)

    Pax,

    MLO

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  3. Actually, asthma free, true IgE food allergy is very rare. Food intolerance is common, comparatively. And, true IgE food allergies can always suddenly cause death. It is one of the things that the majority of people who do not deal with IgE mediated food allergy do not understand.

    Celiac is NOT IgE mediated food allergy.

    Lactose-Intolerance is NOT IgE mediated food allergy.

    IgE food allergy always has the potential to turn deadly. The problem is that one exposure may be mild, but the next may kill instanteneously – there is absolutely no predicting which exposure will cause what result.

    I’ve been living with this for over 20 years. And, am often exhausted by having to explain the difference between IgE mediated allergy and other food intolerances.

    Pax,

    MLO

    Like

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