Allergic Reaction Anxiety

More than 12 million adults and children suffer from a food allergy.  Many are life-threatening, meaning that if they ingest, or in some cases are just exposed to a certain food, their body goes into extreme defense mode.  It causes their blood pressure to drop leaving the brain starving for oxygen and inflammation in the lungs to occur causing severe shortness of breath.  These people, including my daughter, have to consider every food they eat.  Everywhere they go, they bravely carry an epinephrine device with the understanding that at some point in time, a needle might be jabbed in their thigh.  They have parents and loved-ones that are super vigilant, sometimes to the point they feel suffocated and crippled.  In some circumstances, they're isolated and even blamed for causing inconveniences for others.  They've been told that they're blowing their allergy out of proportion and even labeled "disabled" by the Americans with Disabilities Act.

Many food allergy sufferers take their life-threatening allergy in stride, controlling it rather than letting it control them.  Abigail, at 7 and having not experienced a severe reaction, is mostly just upset that she can't eat the foods she wants.  As her parent, though, I've worked extremely hard to make it that way...to give her the right level of "anxiety".  Her dad and I read the labels although she knows how and when to question.  We carry her Epi-Pen, but she for the most part, confirms that we have it.  We discuss all the details of her allergy with her care-givers and create a safe environment for her, but she'll also not hesitate to ask if she's uncertain. She's not ostracized at school because she's matter of fact about her allergy.  She doesn't have to eat by herself but she does make sure that none of her lunch buddies are eating anything with peanuts.  She's not denied special treats on special occasions because there's always a yummy alternative (thanks to me).  And, thanks to the Duke Clinical Trial, we also are blessed to be able to give her something else...a light at the end of the tunnel, the possibility that in several years (just in time for those independent teenage years), she can eat what she wants without the fear of a severe allergic reaction.

But, what about those children that have actually suffered a life-threatening reaction requiring epinephrine and come away emotionally scarred?  Or, are the only child in their school that suffers from a severe food allergy and are feeling isolated?  What about those that are blamed by other kids for not being able to bring a peanut butter and jelly sandwich for lunch?  Even worse, what about being told that it's all in your head...that your allergy can't be as serious as it's made out to be? Regardless of whether you can take it in stride or not, the bottom line is, these kids live with a fear of dying on a daily basis.  Abigail may be well-adjusted (with her allergy) now, but what if circumstances change?

According to a study conducted at the University of Southampton, the quality of life suffers for these children.  The study suggests that "children with peanut allergy have a worse quality of life than those living with insulin-dependent diabetes."  They found that the children with peanut allergies felt more threatened by potential hazards within their environment, felt more restricted by their allergy regarding physical activities, and more worried about being away from home. In contrast, the children with diabetes were more upset about their “restricted” diet, and none mentioned a fear of dying.

That's just the children.  Being a parent of a child with a life-threatening allergy is no walk in the park either.  And, we have the added burden of not projecting our fears onto our children.  There's a good article on the Kids with Food Allergies website.  Titled "Raising a well-adjusted child who happens to have a food allergy", it gives several steps to do just that.  A few include, never let them see you sweat, make your home a safe haven, don't let food allergies define your child and don't make your life revolve around food.

As mentioned in my last post, Abigail has had bouts of anxiety over the last year.  It typically shows up at night around bedtime and manifests itself as a belly ache.  When I ask if it's related to her allergy or participating in the clinical trial, her answer is always an adamant "no".  It could be her age.  It could be school although she does well. I've been doing some research and there is a link between having anxiety as a result of consuming a food that one is allergic too.  That's the next topic.

Food Allergies and Anxiety

I read a post the other day about food allergies and anxiety.  It was written by a fellow blogger and mother of a peanut allergic daughter.  She wrote about a study that indicates that it's not uncommon for children with food allergies to express a lot of anxiety and how she was seeing this first hand in her 10 year old daughter.  It got me thinking and doing some research of my own.

I "interviewed" Abigail to see how she feels about having an allergy to peanuts and to see if her anxiety (manifested as a frequent belly ache around bedtime) could be contributed to her allergy.  Getting her to open up and express herself is about as challenging as getting her to clean her room, so our discussion was very brief.  Here's our conversation:

Does having a peanut allergy make you feel anxious?  No
Does knowing that you can have any allergic reaction scare you?  No
What makes you nervous about having a peanut allergy?  Nothing
Do you trust mommy and daddy to give you foods that are safe?  Yes (Although, if it's a new food, she will ask me if I'm really sure)
Do you trust anybody else to give you foods that are safe?  Yes, Family  Anybody else?  Really, really good friends  Anybody else?  No
What's the worst thing about having a peanut allergy?  Can't eat things I want to.
What do you think makes your stomach hurt (i.e., anxiety)?  I don't know.
Does going to Duke make you anxious?  No
Does anything about the clinical trial bother you?  No  Not even the blood draws?  No, not scared.

And that was the end of our conversation as she ran off to do more important things. Regardless of her casualness, I do know that I've seen an increase in her anxiety level this last year.  I also know that hers are the sentiments of someone that hasn't experienced anaphylaxis.  The tingling that she has in her ears, mouth and throat as a side effect of her clinical trial drops is a nuisance at most.  The one occasion of getting the drops on her tongue that sent her into a panic is a distant memory.  My blogger friend's daughter who has had a severe reaction and gone into anaphylaxis wouldn't answer these questions at all in the same manner.

SafetyTat Temporary Safety Tattoo Give-Away!

Have you seen these temporary tattoos from SafetyTat?  I love these things. What a fabulous idea!

 

 

Just peel and stick them to your child's arm, write their allergy and your phone information and the tattoos stay in place up to 2 weeks. They're also available for specific allergies and can be pre-printed with your cell phone number. Those require a damp cloth for application and last 1 to 5 days.

I, of course, love the Allergy Alert tattoos, but SafetyTat also make tattoos for lots of other situations.. medical alerts, special needs and "If Lost" for crowded places. They even make a "kiss" tattoo for those occasions where your child needs a little TLC.

Just think of the uses...first day of school, vacations, summer camps, trips to theme parks, sporting events. I would have loved to have these for the preschool years, birthday parties and field trips when Abigail was younger and not as verbal.  Even at 7 though, she thinks they are way cool and wants a reason to wear one. She's got a school field trip coming up which will be the perfect occasion to try out the allergy alert tattoo.  And, next trip to a large, crowded event, my 2 year old will be sporting an "If Lost" SafetyTat.

Love these as much as me?  I've got great news!  SafetyTat is going to give 2 of my lucky readers a sample pack of the Quick Stick Write-On's.  Winners get their choice of either the boy, girl or multi-design.  There's more! Through the end of the month, you guys also get 10% off all orders of $15.00 or more if you use the following coupon code (it's case sensitive): PeanutClinicalTrial.  Find all of their products on their website, www.safetytat.com or follow them on Facebook at "SafetyTat:Kids Temporary Safety Tattoos."

This give-away is limited to U.S. and Canadian residents only. Entries must be received by March 31, 2010.  Want to earn extra entries?  Earn 2 extra entries for becoming a "Follower" and 4 extra entries for linking this post to your blog, website or Facebook page.  Just make sure to leave a comment with the link to your blog or website.

Good luck!  Be sure to take advantage of the 10% discount!

Preventing Food Allergies in Children

Last week, I wrote about a new study in England being conducted to determine if either eating peanuts or avoiding peanuts between birth and age 2 was more likely to result in a peanut allergy.  This week, information on a study in Australia was released reporting that avoiding the offending allergen from the 3rd trimester of pregnancy until the age of 2 resulted in less food allergies.

WebMD reported that 7 out of 10 babies born to mothers who to took care to avoid food allergens (based on older sibling allergies) had no food allergies versus 45% of babies born to mothers that did not follow precautionary advice.  The study leader, Velencia Soutter, MD, goes on to say that avoiding the allergen also means eliminating the offending food not only from the diet but also from the environment, in other words, clean house!

At this point in reading the study, I'm intrigued.  This is exactly what I did. I ate lots of peanut butter crackers when I was pregnant with Abigail and while breast-feeding.  My husband and I continued to eat peanut butter products while she was an infant.  At 18 months, I gave her peanut butter, and she had an allergic reaction.

Okay, I'll admit that we do keep a few snack bars, not containing peanuts, but manufactured in the same facility, on the top shelf of our pantry. But, that's really the extent of the peanut products that we've had in our house since we found out she was allergic.  I can also probably count on 2 hands the number of times I've eaten an offending product like a peanut butter candy bar.  So, I can say with much confidence that when pregnant with our second child, I did not consume any peanuts, nor when breast-feeding, nor when he was an infant.  In fact, he's 2 1/2 and still has not had any peanut products.  We've had a RAST test performed, and he shows no signs of being allergic to peanuts.

So, back to the study...
Dr. Soutter did the study because many moms were asking in desperation if there was anything they could do to prevent future children from having food allergies.  They advised 274 pregnant women in their 3rd trimester to avoid the foods that their children were allergic too, but did not require them to.  Of the 274 women, approximately 2/3rds followed their advise.  Their babies were then given skin prick tests at 1 1/2 and 3 years of age to test for the food allergies of their older siblings.

Here's the results:

Another Reason to Shop Trader Joe's

I've written how much I love to shop at Trader Joe's.  I've also written that I'm frustrated that there are so many products that are not safe for Abigail to eat because they are manufactured on shared equipment or in the same facility with other peanut/tree nut products.  That being said, I do have to commend them for their voluntary labeling policy.  On Trader Joe's website, they discuss their allergen labeling policy which includes a statement about their supplier's Good Manufacturing Practices.  At our house, we're zero tolerance on labeling, so regardless, we don't purchase these products.

I recently contacted Trader Joe's about their use of genetically modified ingredients.  They just gave me a really good reason to continue to make my monthly trips across town.  As if I needed another one! Here's their response:

Our customers can be assured that all products in Trader Joe's private  label are sourced from non-genetically modified ingredients. Our efforts began in 2001, when we determined that, given a choice, our customers would prefer to eat foods and beverages made without the use of  genetically engineered ingredients. Our process has been to identify any product containing ingredients that could potentially be derived from genetically engineered crops and work with our suppliers to replace offending ingredients with acceptable alternatives.

Please know that because this is a standard for Trader Joe's products we do not highlight or place a Non GMO statement on our products.

How awesome is that!  I can purchase Non-GMO, Organic, rBST-free and other Natural products for prices less than a lot of processed foods.

Trader Joe's hasn't endorsed this review.  I write this because I'm a huge advocate for eating healthy and want to share any tips I have to make it easier to do so.  But...I wouldn't be opposed if they would advertise on my site or do a give-away.  I might just have to ask them!

Food Allergen Labeling, Part 2

In my last post, I wrote about how, not too long ago and much to my chagrin, I was surprised to learn that the "May Contains" statement on a food package is voluntary.  As long as the Top 8 Allergens are listed in consumer-friendly terms somewhere in the ingredient list, then food manufacturers are following the laws as outlined in the Food Allergen Labeling and Consumer Protection Act.  When a food manufacturer does include information, they do so in good faith but without any type of industry standardization.

So, while us consumers who purchase food for ourselves or for someone with an allergy are very appreciative of this labeling, we are also very, very confused!  In Part 1, I discussed a recent study that found over 24 different advisory terms with the major ones being some form of "May Contains", "Manufactured/Processed in a Facility/Plant", or "Made on the Same/Shared Equipment". I posed a question to you readers. Which allergen advisory labels prevent you from purchasing a food?

A study was published in 2007 in the Journal of Allergy and Clinical Immunology regarding that very question.  At both a 2003 and a 2006 FAAN conference, participants (625 and 645, respectively) from all over the US were asked whether they heeded advisory labels, and if so, which ones.  This graph was included in a report by Dr. Scott Sicherer and presented to the FDA regarding the Use of Advisory Labeling of Allergens in Foods.

 

In 2006, consumers were less likely to heed precautionary warnings (75%) than in 2003 (85%).  From the graph, you can see that they are more likely to not purchase products with a "May Contain" statement than products manufactured or packaged in the same facility as products containing the allergen.  There is also caution exercised with products made on the same equipment.

As part of this study, the Department of Food Science and Technology at the University of Nebraska tested various foods containing advisory allergen labels for traces of peanuts using Veratox, a peanut allergen test.  Accordingly, peanut protein was detected in 10% (20/200) of the foods they sampled, foods such as cereal bars, snack items, frozen foods, desserts, instant meals, bakery goods and baking ingredients. They found clinically significant levels of peanut (>1 mg of peanut or >0.25 mg of peanut protein) in 13 of those 200 products.  Their conclusion was because food products with advisory allergen labeling do contain detectable levels of peanuts, a risk exists to consumers choosing to eat such foods. This is important. They found that the type of labeling statement did not influence the likelihood of finding detectable peanut (except for products listing peanuts as an ingredient).  However, as we can see from the chart above, the wording of those advisory allergen statements did influence the types of foods that consumers purchased.

In looking at another graph from that presentation to the FDA in 2008, it appears that of those 13 products that had clinically significant levels of peanut protein, 2 had a "May Contain" statement, 3 were labeled  "Manufactured using Shared Equipment" and an astounding 7 had labels stating "Manufactured in a Shared Facility."  That's huge...that's the label that many consumers think is probably okay and not so much a risk!

I know it was just one study with 200 items, and I know that everyone has to make up their own mind and follow their own gut instinct as to what they feel comfortable eating.  We've never given Abigail anything that has the word peanut on it's label unless it ends with "free" as in peanut-free facility.  This isn't a game-changer for us.  But, if I was purchasing foods that had advisory warnings and thinking some were less risky than others...than I might consider the possibility that there's a bigger risk than I original thought!

Food Allergen Labeling, Part 1

When a family member has a food allergy, especially a life-threatening one, reading food labels becomes an obsession.  I don't think I purchase a single thing anymore without first reading the label.  Even if it's a product that I know to be safe, I still take a quick glance to make sure that the label hasn't changed to now include a cross-contamination warning.

I thought I'd spend some time discussing food allergen labeling. Even though, I've read labels faithfully now for almost 6 years, I recently learned something about the allergen labeling law that surprised me.

In January of 2006, the Food Allergen Labeling and Consumer Protection Act (FALCPA) went into effect.  Here's what it addreses:

• Food manufacturers must disclose "major food allergens" to include milk, egg, wheat, soy, peanuts, tree nuts, fish and Crustacean shellfish.

• The allergen must be identified by name, i.e., cashews, tuna, shrimp, etc.

• A scientific ingredient like casein may be listed, but a more consumer friendly term, like milk, has to also be included.

What it doesn't address:

• Allergens not considered major, for example, sesame seeds or cinnamon do not have to be listed and can be included in the terms "spices" or "natural flavors".

• Non-crustacean shellfish like clam and squid are not included.

• The "May Contain" advisory statement is voluntary.

That last one was the shocker for me.  For whatever reason, I've been under the impression for the last 6 years that labels had to include the "May Contain" statement and that a statement like "Manufactured in a Facility that also Processes Peanuts" was the voluntary one.

I didn't realize this until I recently contacted Pepperidge Farms about their products.  I was looking at one of their variety cookie products and was shocked to see that pecans was included in a very long list of ingredients, but there was no "May Contains" statement.  I e-mailed them questioning this, and they advised me that they were in complete compliance (I'll post their response at a later date).  Doubting them lead me to further research.

I can't believe all this time I thought a "May Contain" statement was a requirement.  In fact, as published in The Journal of Allergy and Clinical Immunology, an audit done in 2009 of 20,241 products showed that only 17% included an advisory statement.  Chocolate candy, cookies and baking mixes had the highest frequency.  Here's a chart (found in a report given to the FDA on the Use of Advisory Labeling of Allergens in Foods) indicating the products with the highest usage of an advisory statement.

A subset of this audit also indicated that there were over 25 different advisory terminologies, i.e., "May Contains", "Manufactured in a Facility", "Manufactured using the Same Equipment", etc.  No wonder we spend so much time reading labels at the grocery store.  And for me, contacting companies for clarification of their labels.  Wouldn't it be nice if there were some regulated standardizations!!

There is another study indicating consumers perceptions of risk associated with the various advisory terminologies which I will review in my next post.  In the meantime, I have a question for other parents of children with life-threatening food allergies.  What is your comfort level with food packaging labels?  Are you okay with products made on the same line?  What about in the same facility? And, if a manufacturer tells you it's safe, do you take their word for it without understanding their manufacturing process?  I've included a poll at the top of the blog for your answers.