Tuesday, December 21, 2010

Tragic Food Allergy Death Points to Desperate Lack of Education

Everybody has been talking about this story today and I really need to chime in. I first heard of it on The Food Allergy Mama's Facebook page. Then, today, I read the story in the Chicago Tribune and also got flooded with e-mails.

I feel sick about this. This did not need to happen. This poor girl's tragic death could have been prevented. Why did this happen?

The entire facts of the case aren't yet clear and I'm only discussing what I read in the news story. More may be revealed later. Mention was made of Chinese food served in the classroom which the girl apparently ate. Epinephrine autoinjectors, or lack of them, were also mentioned. It's not clear if this student had a food allergy emergency plan or not.

The news story tells how the school ordered in Chinese food after being assured, allegedly, by the restaurant, that the food would be peanut-free. OK, let's just stop right there. Chinese restaurant food can NEVER be safe for a peanut-allergic person. If you know anything about how Chinese food is prepared or its key ingredients, you know that it is off-limits to peanut-allergic people for good reason. Cross-contact will present problems even if actual ingredients do not. In fact, on the list our allergist gave us, Chinese and Asian foods are at the top of the "do not eat" list.

Food allergy education can save lives. For example: "peanut-free" does NOT mean "safe for life-threateningly allergic to peanuts." To many, many people, "peanut-free" means, simply, that the recipe does not contain actual peanuts. Maybe a restaurant, in good faith, says "peanut-free" when they don't understand that what the customer was really asking for was "safe for peanut allergy" or "no risk of cross-contact." Being clear is key. Please, please, be clear.

I've learned never to assume that restaurant staff understand what you mean. That's why you ask for the chef or manager about the meal and present your food allergy cards to the wait staff. Check out FAAN for these downloadable cards.

This story just makes me so fed up. It's not only schools or restaurants that need education, it's the general public. Parents of the school where this child died are now talking "peanut ban." But what good is a peanut ban if people are ordering in supposedly "peanut-free" Chinese food and then serving it to a peanut-allergic girl??? No good at all. Education is key. Education will save lives.

This could have been your child. This could have been my daughter. For all of you heading out to holiday celebrations, please take something positive from this horrific incident and stand firm about your child's food restrictions. Food allergies can be fatal, and it's tragic. Even more tragic is that a fatal reaction could have been prevented with simple knowledge.

My heart goes out to this family in their loss.


Debra said...

One of the more dangerous misconceptions here also appears to be the mythology that peanut oil is safe for the peanut allergic. While that's true in a lot of cases, it's not for my son, whose last RAST peanut result was a whopping 70. We don't even go to mall food courts anymore if there's an Asian restaurant - and there usually is - because the last time we were there he reacted after sitting next to someone who was eating Asian food.

Jenny said...

Debra, thank you for pointing this out. You frequently hear that peanut oil is safe for people with peanut allergies--but it has to be a certain kind!!! Refined peanut oil or something. Sheesh. Who wants to take the gamble??? Not me.

I know what you mean about food courts, also. A true minefield for nut allergies. Peanut oil is used for frying in so many cases--not just Asian restaurants.

kelly said...

excellent post jenny. you are right on on so many levels. we have so much work to do to educate fellow parents, etc. on allergies in general. thank you for all you do in spreading the word.

dannyscotland said...

I have found that people who do not directly deal with someone with a food allergy do not understand how they work at all. Even their best intentions can fail because they just don't know. I agree, education is vital. There are so many children with food allergies these days, that it should really be a bigger issue. In fact, there should be some kind of class or course for teachers, too. The teacher, I feel (being one myself) is the final and most important line that must be crossed in school before a child eats something in the classroom. Had the teacher known more, I'm sure she/he would never have let that child eat that food. I wouldn't have.

allergyapparel said...

Well said Jenny.
I am still in shock and it terrifies me even more. I have a 5yo that is allergic to both peanuts and tree nuts tha started kindergarten this year.
Thank you for helping to educate and for writing this powerful post.

jenny said...

Jenny, I share your anger and frustration. Why? Why ? Why? General public are so ignorant sometimes and what is the worst - when you simply don't know, you assume it's okay. I rather appreciate people tell me they cannot safely serve my child, rather than making false promises. I had a manger from Buffalo Wild Wings last week told me : " well, I think peanut allergy is okay, I don't have peanuts in here, hmmmm, don't think so... hmmm, maybe?...."

I simply thanked him and told myself never to bring my child there. I was too upset to give him a lesson on food allergy, but again, you would think a manager should know this!!!

Anonymous said...

Thank you for your comment and thanks for this blog. My child is allergic to peanuts and tree nuts. We avoid all Asian food that I haven't made myself (that is hard sometimes because we are Indian). Sometimes people are offended that I won't let my child eat food prepared in their homes (guess what, Indians use TONS of peanuts and cashews in all of their cooking). I try to educate them--but some people just don't get it. But my daughter's health and safety is a lot more important than a few bits of random food. We must advocate for our kids--their lives depend on it. Thanks again (and I found you on google).

Jenny said...

Thanks for commenting, everyone. I'm still heartsick over this story.

To the last person who commented, I appreciate your insights. I've often wondered how Indian people cope with nut allergies since nuts are such a big part of that cuisine. You have a particular challenge and I'm sure it's not easy.

Cultural and religious ties to certain foods can make life with food allergies difficult. As you point out, there are ways of coping that don't endanger someone's life. It's never worth that.

Sharw said...

Even the pans are not washed out thoroughly in many restaurants, just rinsed with boiling water and wiped. Only time my son went to Chinese restaurant-we brought in pizza for him to eat. Need 3 epipens/twinjects at school: 1 in nurse's office, 1 in backpack in locker, 1 on his person-in the pencil case that goes with him everywhere. Ask Ask Ask again.

Anonymous said...

I'm amazed that something like this could happen with so many supposed lines of defense. I have food allergies myself, I can't imagine having to worry about a child with a food allergy. I agree, education on the subject is the best tool that we have to keep things like this from happening in the future.

I referenced your article in my blog, we seem to share the same thoughts of disbelief in the simple fact that Chinese cuisine was considered "OK" just through a verbal OK.

If that was my kid, she would have been allowed to skip school that day.

Anonymous said...

the saddest part of this whole story besides the loss of life is that this girls mother is a MD and she was called as this was happening. The teacher is asian science teacher (the kindest person ever) and there was an epi pen that belong to another child but apparently it was not used on this child but it could have. There are many layers to this story yet to be told. The deck was so stacked against this poor girl. Our community truly grieves for Katelyn.

Anonymous said...

Jenny's point is key, education. But don't only educate on prevention and avoidance, educate on recognition and action. There were lines of defense in place, from her mom always reminding her to carry the epipen, to the school nurse who cautioned the girls that morning, to the teacher believing he had eliminated risk and others (undoubtedly there could have been more). But every line of defense can potentially fail and when accidental exposure occurs the teacher/nurse/parent/child need to know how to recognize it and what to do if they have/dont have their epipen. The investigation may tell more but it sounds like Katelyn had time, but the severity of the situation was not recognized until it was too late.

Andrew said...

My daughter is allergic to all nuts and my wife and I cannot even get our families to understand that the food the make for us needs to be nut free. We just celebrated Christmas by getting together on Christmas Eve and we argue and argue yet my sister still made a baked brie with pecans. The response we get is, "there just pecans." Last time I checked pecans were nuts. The best part is we become the bad guys because we have the nerve to say something. "Sorry, I don't want your cooking to KILL my daughter." Every time we go to my mother's for any reason we have to go remind everyone of the fact that our daughter is allergic to nuts and we go over probably once a week. We have known about her allergy for over a year and still we fight.

Jenny said...

I agree with the commenter who said that many lines of defense failed with this tragic death.

Knowing what to do is first...actually doing it is the biggest thing in protecting a life.

To me, what led to this tragic death seemed like a "perfect storm" of many actions and decisions that all combined to cause a fatality.

Also, to the last commenter who is having difficulty with family members and food, I'm so sorry and I hear this alot. I hope you bring separate food for your child when visiting relatives who refuse to take precautions. It is so easy for a slip-up to occur and the results, as we have seen, can be tragic.

I'm sorry for anyone having trouble getting food allergies across to family. I have found that it doesn't usually sink in overnight and repeating ourselves is sometimes necessary, unfortunately. Don't give up trying to educate family members, but until the "get it", please use precautions and protect your child no matter how much others may not understand.

Jenny said...

aixelsyd13, thanks for linking to my blog. I am a big fan of your blog and I like the way you make your points, so I'm glad you appreciated mine on this topic.

Canama said...

I'm a 14-year-old boy with a severe peanut allergy (I used to be allergic to milk and mustard, but I outgrew both allergies). This blog came up when I was looking up some information on the death of that girl.

The whole thing was a bit of a wallbanger to me. Why wouldn't the kid carry any medications? I keep an EpiPen and 2 Benadryl tablets in my binder and lunchbox at all times. Isn't that what any reasonable person with a food allergy would do? And why would someone with peanut allergies even THINK of eating Chinese food? What is this?

The general public's knowledge of food allergies is so bad that not even some of the people with allergies know what to do.

Anonymous said...

The sad part too about this story is that I think the parents of the kids with allergies did "approve" the restaurant based on what the teacher said about "checking first". Things like this happen when so many people believe their kids allergies are mild based on previous reactions.
When you read about food allergy deaths, there is a pattern: "I didn't know", "her reactions were always mild", "she never needed an epi pen", until that changes, these tragic losses will continue.

Also, in addition to education of allergies, better plans during school etc.
Schools really need to put a big kabosh on all the food centered activities/parties etc. Not only from a safety standpoint, but from an inclusion standpoint. Leaving people out because of their allergies is just wrong and it is actually illegal.
So, there's a lot of work that needs to be in our allergy community and by our allergy community on many levels.