A New Year's Thank You!

I hope everyone has enjoyed these last days of December and the many holiday events that fill the calendar this time of year.  I also hope that everyone has stayed safe and healthy.  Is it too much to also hope that everyone spent the holidays stress free and not in the least bit worried about the safety of their peanut allergic child?

I must admit that due to our participation in the peanut clinical trial at Duke, my worries have been a lot less than in previous years.  Knowing that Abigail is on the actual peanut protein drops and that she flew through the food challenge like a champ alleviates a great deal of the worry.  I was still diligent in checking ingredients, I still packed a few safe party food alternatives for those family gatherings, I still volunteered for her class Christmas party and even made sure I was the one signed up to bring the sugar cookies to decorate and I still had to comfort the disappointment when a few really scrumptious looking desserts had to be passed up on because of ingredients that might be subject to cross-contamination.  But, the worry of who was eating what where wasn't always in the back of my mind, and there were no hurt feelings when a hostess hadn't taken her allergy into consideration.

So, here on the last day of the year 2010, I wanted to take a minute and thank everyone at the Duke Clinical Research Unit that have made it possible for us to be on this journey.  Our family is so very grateful for this opportunity.  I also wanted to thank our family and friends that have supported us with many prayers, hours of childcare for our 3 year old and their overall interest in Abigail's progress.  Lastly, I wanted to thank you, my wonderful readers, that have been so generous in your comments, well wishes, blessings and e-mails.  I can't possibly explain how much this blog and your interest means to me.

Many Blessings for a Safe and Happy 2011,
Melanie
a.k.a. Mom with a Mission

Lots of Good Food!

I don't know about you, but I use the holidays to splurge and try new recipes that I wouldn't necessarily make throughout the rest of the year.  I've spent lots of time in the kitchen these last few weeks and have a few new favorite recipes that I wanted to share.

Hands down, my favorite new recipe was the Easy Cheesy Buffalo Chicken Dip that I made on a whim for Christmas Eve afternoon.  It's a Kraft Foods recipe, but I found some great, healthy substitutes for the brands they list in the recipe.  I could not stop eating it.  I had to make my husband put it away in order to stop.  I will definitely be making this again sometime soon.

Also, for the first time, I made cinnamon buns, the kind you roll out the homemade dough, spread with butter, cinnamon and brown sugar, then roll the dough to form a tube shape and slice.  We ate those topped with a powdered sugar drizzle on Christmas morning, the morning after Christmas, and the morning after that.  I think this was Abigail's favorite of the season.

I shared a favorite at a large family Christmas gathering.  I love this recipe because I can easily get my kids to eat not only sweet potatoes but butternut squash as well.  It's also extremely easy to make.  It's a Butternut-Sweet Potato Streusel (almost anything tastes good with a Streusel topping) that requires just the dish to bake it in and a small bowl to make the topping in.  Here's an online version of the recipe.  The topping was a little too sweet for us the first time I made it so I cut it in half and it's perfect.  And, of course, I didn't add the nuts.

Also, appropriately named, White Christmas Chili (we did have a white Christmas this year...the first in many, many years) was really tasty.  I tore this recipe out of a Southern Living Magazine years ago, 2002  according to the date in the margin, but never got around to trying it until this year.  I was able to find the recipe online so you can have a copy too.  I used 1 less can of chopped green chiles than the recipe called for thinking it would be too spicy for the kids, but next time I'll definitely use the 3rd can.  It needed just a little more heat...besides, the kids didn't eat it anyway.  They opted for chicken nuggets. Go figure.

Those were my favorite of the season.  I had several opportunities to open the jalapeno pepper jelly I made last month, and wasn't disappointed in my efforts.  I served it with cream cheese and crackers.  I'm also looking forward to next weekend when I can try a Mac and Cheese with Goat Cheese and Champagne recipe that I came across.  Just got to remember to save 1/2 cup of champagne from New Year's Eve to use.  I think it's going to be fabulous.  Afterall, it's got champagne, goat cheese, parmesan cheese, gruyer cheese and heavy cream in it.

I love the food this time of year.  Hope you too have had fun cooking and trying some new dishes.  Send me a link with your favorite recipe.  Now...time to hit the gym!

Christmas Greetings

From our house to yours...

Wishing you Peace & Joy this Holiday Season and 

many Blessings in the New Year!

Teenage Girl Dies of Anaphylaxis

Friday of last week a 7th grader with a peanut allergy died of anaphylaxis after eating Chinese food served at her class holiday party.  I wanted to provide the link to the article in the Chicago Tribune in case you wanted to read the full story.  It's really quite tragic, and I know the parents must be suffering.  Apparently, the restaurant had been contacted to determine if the food was safe.   Evidently, it wasn't, and if I've read the article correctly, the school was unable to inject the child with an EpiPen because there wasn't a health profile on file for her.

As usual, the Comments at the end of the article are infuriating and there appears to already be a lot of blame passing.  It's unfortunate that the food was unsafe, but downright horrible that the school could only call 911.  Parents, if you haven't taken the opportunity to go to the school and fill out all of the health forms for your food allergic child, please let this be a good reason.

I've been unsuccessful in linking the Peanut Allergy Action Plan that I give to all of Abigail's caregivers, but if you want to e-mail me at peanutallergyfree@gmail.com, I'll e-mail you a blank copy to complete.  Also, don't forget to arm the school with antihistamine tablets and EpiPens!

New Rules for Diagnosing Food Allergies

Last week, as reported in the Wall Street Journal, the National Institute for Allergies and Infectious Diseases issued the first clinical guidelines for diagnosing and treating food allergies stating that blood or skin tests alon aren't sufficient when making a diagnosis.  The recommendation is that a combination approach should be taken including a detailed medical history review, and in some cases, an oral food challenge.

According to the WSJ articule, "the guidelines, published this week in the Journal of Allergy and Clinical Immunology, are aimed at resolving wide discrepancies in diagnosing and treating food allergies among allergists, dermatologists, gastroenterologists, pulmonologists and emergency physicians, as well as pediatricians and internists. More than 30 professional organizations, federal agencies and patient groups were involved in the report, which was in the works for two years."

There has been a great deal of press lately on the topic of whether the many children diagnosed with food allergies over the last couple of years actually have a severe enough allergy to warrant completely removing all possibilities of contact.  In many cases patients or parents of patients have been told to eliminate multiple foods only to later do a food challenge and find the patient can tolerate all but one or two of those foods. These recommendations were based on the results of either or both the RAST blood test or the skin prick test.  According to experts, "having IgE antibodies to specific foods doesn't necessarily mean a person will have an allergic reaction when eating the foods. Skin-prick tests are more predictive, but they, too, measure IgE "sensitization," which may not result in an actual reaction. The report estimates that 50% to 90% of presumed allergies are not, in fact, allergies."  In fact, according to the WSJ, a study published online in the Journal of Pediatrics this fall reviewed 125 children evaluated for food allergies and eczema at National Jewish in 2007 and 2008.  They found that over 90% of the foods the children were avoiding were returned to their diets after food challenges.

Here is a great illustration of the new clinical guidelines for diagnosing food allergies as opposed to what has been happening.

Other significant guidelines from the National Institute for Allergy and Infectious Diseases include:

• Introducing solid foods to infants should not be delayed beyond 4 to 6 months old.
• People with an egg allergy need not avoid the measles, mumps, rubella (MMR) vaccine. But they should avoid vaccines for influenza, yellow fever or rabies.
• Even those at high risk for food allergies, such as family members of those with allergies, may not need routine testing. One exception: siblings of children with severe peanut allergies. 

I'm hoping these guidelines have a very positive impact of the understanding of food allergies.  I simply couldn't imagine living the lifestyle that our family has lived now for seven years only to find out that our child didn't really have a severe enough food allergy to warrant all of the precautions that we've put into place.  What a cruel twist of fate that would be.  Also, maybe if there is less confusion within the allergy community, i.e., different recommendations from different doctors, different requirements for different allergy patients, etc.,  it will make it easier for the general population to better understand the implications of a true, life-threatening allergy, and have a better appreciation.. maybe even a little more tolerance for those with allergies.

Interview with Dr. Wesley Burks

In all of our trips to the Duke Clinical Research Unit, we've never actually met or even seen Dr. Wesley Burks (Chief of the Division of Pediatric Allergy and Immunology at Duke University Medical Center in Durham, NC). This picture is as close as we've come. I've joked before that I feel like if we do, we should ask for his autograph given the amount of publicity he and his department get regarding their research of food allergies.  All joking aside, we are very grateful to Dr Burks and his staff at Duke for allowing Abigail the opportunity to participate in the peanut sublingual immunotherapy trial, and for giving her the chance to become peanut allergy free!

A fellow mom/blogger of food allergic children recently had the opportunity to interview Dr. Burks.  She has an informative website, www.allergymoms.com and a blog at http://www.allergymoms.com/modules/wordpress/index.php.  Here is the link to her interview with Dr. Burks.  It gives a great overview of the immunotherapy clinical trials, some results they've seen, next steps, etc.  There's more information on the oral immunotherapy trials (peanut flour) than the sublingual (drops that Abigail takes) because that was the original trial, and they have 5 plus years of data.  Our doctor for the sublinugal trial has submitted a paper and hopes that it will be published soon.  We're looking forward to reading about the current successes of the sublingual study.  It's neat to know that Abigail's data is a part of those results.

Not your normal birthday cake!

Today is my husband's birthday.  With it being so close to Christmas, his birthday is often spent doing holiday related activities and today was no exception.  It's a very busy weekend with both kids participating in a holiday music concert last night, our community Christmas parade today and tomorrow both kids are singing in two different church services, we have an Advent festival to attend and a Christmas tree to purchase.  Somewhere in all of that, we have to find time to have a family birthday party.

I spent this morning making a special request cake.  It wasn't your normal birthday cake.  He asked for a chocolate marble cheesecake.  I've never made a cheesecake before, but because I often feel like I short-change him on his birthday, I figured it was the least I could do.  I also don't think he realized what an undertaking it would be.  I chose a recipe (here's a link) that called for Irish Cream Liquor, a special dark chocolate wafer crust, a chocolate sauce topping...and of course, was peanut safe.  Three grocery stores later and an early morning trip to the ABC store this morning, I had all of the ingredients.  I enlisted Abigail's help to crush the cookie wafers and to do lots of stirring.  We were up against the clock because the parade started at 1:00 and the cheesecake had to bake an hour and an half.  But, we did it.

Here it is.  It's so pretty that I had to take a picture.  Frankly, I'm quite impressed with myself.  Of course I'm saying this without having tried it first.  We're going to try to work in eating a piece tomorrow between getting a Christmas tree and being at the church for an afternoon event.  We couldn't eat it tonight because it has to be refrigerated at least 6 hours after baking.  I've got candles, party plates and napkins ready though.  Can't wait to cut into it.  I just hope it tastes as good as it did in the bowl this morning.

Happy Birthday to my wonderful husband!  This cheesecake is definitely a gift from the heart!

"Clementine"

Abigail and I have recently discovered the "Clementine" series of books by Sara Pennypacker (also author of the "Flat Stanley" series).  Being in 2nd grade, Abigail is encouraged to read independently at least 30 minutes a day.  That doesn't mean though that she no longer wants me to read a book to her at night before bed.  We've read a variety of chapter books, some I've enjoyed, and some not so much.  I don't mind reading any of the "American Girl" books or favorites from my childhood, Ramona, Charlie & The Chocolate Factory, Charlotte's Web, etc., but I find some quite obnoxious, i.e., Junie B. Jones, and won't read those aloud.

From the first chapter of "Clementine," I was hooked.  Clementine is a precocious 3rd grader that quite unwittingly gets into loads of trouble when all she really wants to do is help.  Abigail enjoys hearing the escapades of the 9 year old, and I love the subtle humor.  I love when a book or movie appeals to several generations.  I'm reading this book and laughing out loud at something that Abigail doesn't get.  It doesn't bother her that she doesn't get it because she's too busy enjoying the story.  And, I'm not worried, because even if she did "get it", it's not inappropriate that she did.  Makes the reading bedtime ritual a fun experience for both of us.

Now, you might be wondering why a peanut allergy/healthy living blogger would be reviewing books for children.  It so happens that Clementine's younger brother has a severe peanut allergy. 

In the 2nd book, "The Talented Clementine," Clementine must come up with an act for a talent show, but feels that she has no talents.  She spends the better part of the book looking for one.  She ends up demonstrating an unexpected talent and surprises everyone, including herself.  Her parents ask her to join them for a special dinner out to celebrate.  Here's the peanut allergy part that had Abigail feeling particularly special..."Usually, when my parents go out, it's my job to make sure the babysitter doesn't bring any peanuts and leave them around.  Broccoli (the brother**) is allergic, and if he has even one tiny peanut, he might have to go to the hospital with his neck all blown up or something.  "We'll talk to the sitter," my dad said.  "I don't know," I said.  My brother had never been left with a sitter without me to save his life." I'm skipping some here..."When the babysitter came, my parents told her and told her about the peanuts.  And then I told her and told her and told her, too."  Skipping more...."But when we got to the lobby, I couldn't leave.  "Wait here."  I hurried back to our apartment, got one of my mom's permanent markers, and wrote on my brother's forehead, NO PEANUTS FOR ME! in big, blue capital letters.  Then I felt all right."  Then there's a cute sketch of the little brother with the writing on his forehead.

Children with life-threatening food allergies can and most often go through periods where they feel alienated.  We like to relate to others, to circumstances, to songs, to stories.  Frankly, there aren't a lot of situations where food allergic children can relate to any of those things so when they chance upon a new friend with an allergy, a special activity or a book that they can relate too, they feel special, encouraged, part of something.  The "Clementine" books do that for Abigail.  The brother with the peanut allergy is just a supporting character, but an important one nonetheless.  We read about him having a severe allergy and the steps that Clementine takes to keep him safe, and we're encouraged.

So, here's a big thanks to Sara Pennypacker for including a tough topic in her stories, for making children with severe peanut allergies feel special and for bringing awareness of the issue to my daughter's peers...and their parents that read the books with them!

Can't wait to read the next two books, "Clementine's Letter," and released just this year, "Clementine: Friend of the Week!."  Both of which are already purchased and waiting to be wrapped for Christmas.  The gift tag will read:  "To Abigail and Mommy...Happy Reading!"


**If you're unfamiliar with the books, one of the big mysteries is the name of the little brother (it's a huge author's secret).  Clementine feels it's unfair that she was named after a fruit, and he wasn't, so she refers to him by various names of vegetables.  We've read 2 out of the 4 books so far, and I'm not sure he's been called the same veggie name twice.

Food Allergies & Kissing...

Abigail is just 7 years old so we're years away from having to worry about her having a make-out session with a boyfriend that could trigger an allergic reaction. I had to pause there.  The image that statement evoked brought a shudder. Ugh!

Making the headlines this week was a recent presentation that the President of the ACAAI, Dr. Sami Bahna, made at the Annual Scientific Meeting of the American College of Allergy, Asthma and Immunology.  An allergic person may have a reaction after kissing a non-allergic person even if it's been hours since that person ate the allergic food and/or brushed their teeth.

According to Dr. Bahna, speaker and lead author of a new study, “If you have food allergies, having an allergic reaction immediately after kissing someone who has eaten the food or taken oral medication that you are allergic to isn’t highly unusual.  But some patients react after their partner has brushed his or her teeth or several hours after eating. It turns out that their partners’ saliva is excreting the allergen hours after the food or medicine has been absorbed by their body.”

MedicalNewsToday.com reports that the typical symptoms of a "kissing allergy" are swelling of the lips or throat, rash, hives, itching and wheezing.  These type of reactions occur in people who are highly allergic to a food or medication.  For highly allergy individuals, it's advised that the partner without an allergy brush their teeth, rinse their mouths out thoroughly, and avoid placing anything in their mouths the other person is allergic to for 16 to 24 hours - then they can probably enjoy a kiss. However, sometimes even these measures are not enough.

And to clarify, we're talking saliva swapping kisses here, not a quick kiss good-bye.  Dr. Bahna ended his presentation with a statement that he did not intend for allergy patients to live in fear.  Also, it's important to note that a reaction is totally dependent on the severity of the food allergy.

While we are years away from both the conclusion of the peanut clinical trial at Duke and from Abigail dating, this issue was a factor in making our decision to participate in the study.  My husband and I had discussed the story of the 15 year old girl that reportedly died after kissing her boyfriend who had eaten peanut butter.  That incident was but just one of the many reasons for us deciding to enroll her in the peanut sublingual immunotherapy clinical trial.  FYI, it was later proved in a Coroner report that the girl died from a severe asthma attack and not the kiss.

I'm still shuddering from that first mental image.  I'm thankful my little girl is just that....still a little girl.  I'm not prepared for the teenage years yet!

Not a good day for a showing!

We have our house for sale in an effort to move closer to my husband's new job.  It is not an easy task to keep a house "show" ready with an active family of four, two of those family members being 7 and 3.

I was organizing my recipe books, a project I've wanted to do for years, but never had the time, when I came across a recipe for jalapeno jelly.  My pepper plants are full of red and green jalapenos right now so I thought why not?  I had the jalapenos and bell peppers in my garden and sugar and cider vinegar in the pantry.  All I needed was some pectin, limes and cute jelly jars...easy enough!  Look at that picture.  It looks like a bomb went off in my kitchen.  It was Saturday afternoon, and all I kept thinking was what if someone called and wanted to come see the house in an hour.  Lucky (or maybe unlucky) for us, no one called.  I shouldn't have worried anyway.  Apparently, there are no home buyers right now.

This week's market report from our Realtor shows a 22 month inventory of available homes.  Just in our zip code there are one hundred thirty-six homes available for sell, and only 6 homes in our listing price range sold last month.  I know it only takes one buyer, but it's very frustrating nonetheless.

So, how did my jelly turn out.  Beautiful, aside from the fact that this was all I got from that mess I made.  Can't wait though to try it with some cream cheese and crackers over the holidays, or maybe even served as a relish with a roast.  Next up, the green pepper jelly, and another huge mess to clean up.

Shaklee Products

I was recently introduced to the Shaklee line of cleaning products.  With a company history dating back to the 1950's, a stellar record of environmental stewardship and support of social causes and proven product performance, I'm quite surprised that I've not heard of Shaklee before now.

I was lucky enough to be sent a Get Clean Starter Kit by a local distributor.  It felt like Christmas opening the box of cleaning products for all areas of my home...laundry, dishes, bathrooms, kitchen, etc.  I agreed to review the products after the distributor shared with me how his then 3 year old daughter's asthma and allergies would flair up after their routine house cleaning, and that when they switched to this line of cleaning products, her asthma symptoms subsided.  For the last 2 1/2 years since switching to the Get Clean products, she's required neither a Nebulizer or steroid inhalers.  Maybe coincidental, but definitely note-worthy.

With asthma and allergies going hand and hand, I was intrigued, and I thought my readers would be also.  Common cleaners can actually increase the risk of kids developing asthma which has increased more than 160% in children under the age of 5 from 1980 to 1994, and is the most common serious chronic disease of childhood.  And, this is important, with the exception of the Germ Off Disinfecting Wipes which includes soy, the Get Clean line of products is free of milk/dairy, peanut, soy, wheat gluten, fish, shell fish, mango, sesame, sunflower, kiwi, tropical fruits, melons, eggs and seed ingredients making the products a great choice for food allergy sufferers.

As if that's not enough, Shaklee claims that the Get Clean product line out-cleans or matches 22 national brands, and if you don't see that type of performance, they offer a 100% money-back guarantee.  Unlike many of the competitive brands, the products are safe and do not include hazardous chemicals.  All of the product packaging is "green", i.e., the ingredients come from natural sources, the packaging is recyclable and the products do not include chlorine bleach, phosphates, nitrates, borates, etc.

For example, the Basic H2 Organic Super Cleaning Concentrate can be used indoors or outdoors, and when used as directed, can tackle grease, grime and dirt on any washable surface..  One bottle (at just $12.15) equals the cleaning uses of 5,824 bottles of the 26 ounce size of Windex.  In fact, by me receiving the starter kit, 108 pounds of packaging waste should be kept out of landfills and 248 pounds of greenhouse gas eliminated.  For someone that becomes more of a tree-hugger by the day, that's exciting!

But, how did I like the Get Clean line of products?  My dishes are spotless, my windows shine and my clothes look, smell and feel great.  Truthfully, I expected all of the products to work well.  What was surprising was the feeling that I was doing something really good for my family, for my home environment and for my planet every time I used them.

What is my favorite?  So far, I think the Soft Fabric Dryer Sheets are the most clever.  Shaklee makes them with a 100% vegetable-derived softener on fragrance and preservative free, biodegradable sheets.  The sheet breaks in two in the dryer so that there is a more even distribution of softener and less static cling.  What I find really cool is that when your laundry is dry, you can put the used dryer sheet in with your recycling.  My favorite product though is the Basic H2 Organic Super Cleaning Concentrate that I mentioned earlier.  Per the instructions, I put 16 ounces of water and just 2 drops of the concentrate in the spray bottle.  Using the special cleaning cloth that came in my kit, I tackled my chandelier.  The results were so phenomenal, that I literally went around my house and cleaned every single item (excluding my windows...wasn't up for that project) that I could...mirrors, picture frames, computer monitors, TV screens, light fixtures, etc.  Love, love this product!

I'm quite impressed with the Shaklee products, economical pricing, support literature, company history, award portfolio and corporate environmental initiatives.  I feel lucky to have had the opportunity to try out and review the cleaning products.  And, rest assured, had I not liked them, you would have known.

If you would like more information on the products that I've mentioned or the other Shaklee products including their line of nutritional, weight management or beauty products, then check out their website at http://allergyhelper.myshaklee.com/us/en/.

Halloween Success Story

Halloween is but a fond memory already pushed aside by Christmas merchandise and Christmas music playing in the stores.  But before we put Halloween completely away until next year, I wanted to reminisce about a positive experience we had this year.

Holidays are difficult for people with severe food allergies because food is often the center of attention.  Kids especially have a difficult time with Halloween and trick-or-treating.  At 7, Abigail has a complete understanding of the fact that she'll get a lot of candy that she cannot eat.  New this year though was that instead of sorting candy with me, she traded with a friend.  As soon as they got back from trick-or-treating, the girls dumped out their bags of candy in the floor of the garage and proceeded to trade non-safe candy for safe candy.  Abigail has gotten so good at knowing what candy she can eat that she ended up with not a single questionable piece.  I was very proud that she did this on her own, but somewhat melancholy that I was not needed.  And, maybe a little disappointed that I wasn't going to be able to sneak a candy bar or two knowing that most of those end up in the discard pile.  That was until I remembered that my 3 year old also had a big bag to sort!

Speaking of parents sneaking a piece or two of their kid's candy, I came across a few fun Halloween candy facts in the weekly "Parade" newspaper insert that I wanted to end with.

• 68% - the number of adults that admit to pinching their kid's Halloween candy.  See, I'm not alone!

• 7.2 billion - the number of Smarties (15 per roll) in kid's trick-or-treat bags.  And...Smarties is safe for peanut allergies.

• $2 billion - the amount spent on Halloween candy this year.

• 9 billion - the number of pieces of candy corn produced in 2010 - enough to circle the moon nearly four times.  I never did find any this year that were safe for Abigail.

• 19 million - the number of pounds of Reese's Peanut Butter Cups made in October (about as heavy as the Eiffel Tower). 19 million pounds of potentially hazardous material for our peanut allergic kids!

Now on to Christmas preparations.  But stop...wait a minute!  Aren't we forgetting about Thanksgiving?  Apparently, there's no money to be made in Thanksgiving.  Guess the stores are skipping that holiday.

We're not and will be celebrating Thanksgiving with our families.  At Thanksgiving, Abigail always looks forward to her GiGi's pecan pie made with pecans from the tree in their backyard.  It's the only tree nut she can safely eat because there is zero chance of peanut cross-contamination.

Here's to making it through another Halloween safe and sound and to the upcoming celebrations with family and friends.

Kellogg's and Kashi

If you're kept up to date by the Organic Consumer's Association, then this is old news; however, with an image like this, I find it very fitting to write this post here at Halloween.

Recently the OCA asked that consumers join them in boycotting Kellogg's based on their use of genetically engineered ingredients.  The catalyst for the boycott was a response received by a Kellogg's Consumer Specialist excusing the use of these ingredients by stating that because organic ingredients are subject to cross-pollination with other genetically modified (GM) ingredients than there's no need to bother eliminating the GM ingredients...or something to that effect.  I've copied the response from the OCA Take Action Alert:

Thank you for your comments regarding the use of biotechnology ingredients. Like you, we want only the best ingredients to go into our products.

Biotech ingredients are safe and have become common in the open market. Sixty to seventy percent of packaged foods in the U.S. include biotechnology crops. Even organic ingredients can contain biotech ingredients due to cross-pollination.

We use biotech ingredients based on the backing of groups including the World Health Organization, the U.S. National Academy of Sciences, and the American Medical Association that confirm there are no safety concerns.

Given that I was already unofficially boycotting Kellogg's, having already removed their products from our grocery cart due to their use of GM ingredients, this was no big sacrifice.  That is until I realized that Kellogg's owned Kashi.  Now it's an entirely different story.

I like the Kashi products and have highlighted them in past posts.  A big reason for that is I feel that the company is very responsible in their food allergen labeling, that their product is a healthy alternative to the main stream brands and that the company has a great focus on the environment and sustainability.  In a company profile, I learned that Kashi itself isn't a big company (if you take Kellogg's out of the equation) consisting of just 70 employees.  I had my suspicions about their use of GM products so I limited our purchases to their breakfast cereals.  My kids like the cereals and don't complain when they're served it for breakfast instead of something with an animal mascot on the front of the box.  Frankly, it's quite hard to find cereal that meets my high standards and is also safe for Abigail.  Most "organic" cereals are processed in a plant with other peanut products.

I recently contacted Kashi about their use of GM ingredients, and got the following response:

Thank you for contacting us about our products and the use of genetically modified organisms. At Kashi Company we believe in providing pure, delicious, minimally processed foods for our consumers.

The basis for our product line is our proprietary blend of Seven Whole Grains & Sesame. The whole grains include oats, long grain brown rice, hard red winter wheat, rye, buckwheat, barley, and triticale. None of these grains are commonly harvested using genetically modified organisms.

We do not voluntarily source ingredients that are genetically modified. Due to cross-pollination at the level of the farm and manufacturer it has created an environment in North America where GM is not sufficiently controlled therefore we cannot guarantee that the ingredients we source are GMO free.

Certified organic products are grown using non-GM seeds, but even organic products face significant challenges when it comes to controlling for contamination. Kashi does offer an organic line of cereals called Organic Promise™. 

I can see the Kellogg's influence in their statement concerning the cross-pollination of non-GM plants.  In addition to my reply, here's a link to a message board discussing Kashi's ingredient sources for some of their other product lines.

Here's what I decided.  My favorite cereal is the Organic Promise Cinnamon Harvest cereal and my kids go through a box of Oat Flakes & Blueberry Clusters every couple of days.  My cereal is organic, and the kid's cereal is made using their blend of whole grains none of which are high on the GMO list.  I've found a couple of other safe cereals at Trader Joe's that I now purchase in large quantities to add some variety.  As for the rest of the Kashi products, I don't purchase those anymore.

It makes me both sad and mad at the same time that this much thought, effort and research has to go into the food we purchase.  I'm also disappointed to find an otherwise healthy line of food made toxic by the use of genetically modified ingredients.  Kashi, take note....there are other really good food manufacturers doing what it takes to ensure that they use quality, organic ingredients.  And, as soon as Abigail finishes this clinical trial, and can eat foods processed in a plant that uses peanuts, we're switching!!

Another trip to Duke by way of the beach!

It's been over 3 months since we've last been to the Duke Clinical Research Unit for the peanut SLIT trial.  In fact, our last visit was the food challenge when Abigail consumed up to 8 to 10 peanuts.  Since then it's been status quo.  She continues to consume nothing with peanuts, nothing made using the same equipment or nothing even manufactured in the same facility with other peanut products.  She still takes 8 drops once a day under her tongue, holds them there for 2 minutes and eats nothing before or after for the specified time period.

This visit was short and served only as a "check in" to answer questions and get more drops.  Our next visit, 3 months from now, will be a little more involved.  There will be another blood draw, skin prick test and saliva collection.  This routine will continue until May of 2012.  Every 6 months, testing, 3 months in between, a "check in", maybe even by phone to save us a 2 1/2 hour drive.

I did hear a few updates at this visit.  Our doctor and staff have written a paper with the findings to date.  It's in edit now and should be published by the end of the year.  It's pretty exciting that we've been in the study for long enough that initial results are ready to be made public.  Also, that we are part of those results.

There is also not going to be a food challenge at the 2 year mark as originally planned.  The protocol indicated that a challenge to up to 15 peanuts would be given.  I think they've determined that the food challenge process does not warrant knowing if a child can consume 5 to 7 more peanuts.  If some of the participants in the study can eat 8 to 10 peanuts then they've proven that you can be "desensitized".  Staying on the drops for 3 years is a means to become "tolerant".  Abigail will be food challenged again at that 3 year mark.

I've mentioned in a prior post that the immune system is slow to change, and in the case of food allergies, can take 3 years or more of daily dosing to build up tolerance.  The peanut flour trial has been going strong for over 3 years.  Participants are now eating peanuts on a daily basis, but what happens when they stop eating peanuts.  Will their body remain tolerant?  That question is still unanswered.  Some of those participants stopped for as long as 3 months and were able to then pass the food challenge again.  But Duke has not had them remove peanuts from their diet for any longer than that?  I definitely didn't sign us up for that study!

We incorporated a long weekend at the beach in with this visit.  It was much needed and well deserved.  We finally got our house officially on the market, but it's been an exhausting process.  A trip to the beach was just what we needed.  The weather was fabulous, and we did nothing but play and rest.  There were tidal pools out in front of the house every day that the kids loved swimming in (yes, swimming in October).  Abigail was a real pro at building sand castles as seen in the picture.  So, another trip to Duke, but only after a great weekend at the beach!

Food Allergy Bullying

As parents of peanut allergic children, worrying about an accidental exposure is not our only concern.  We also need to be aware of the potential for possible malicious exposure.  According to a recent study published in the Annals of Allergy, Asthma and Immunology, 1 in 4 children, teens and young adults are teased, bullied or harassed about their allergy.  JoNel Aleccia, a health writer for msnbc.com, reports the details of the new study in her article, "Peanut menance? Allergy bullies use food to torment allergic kids." She begins her article with a horrifying tale of a high school student in Washington State who purposely smeared peanut butter on the face of a student with a serious peanut allergy.

As to be expected, the percentage of reports of bullying rises according to age.  Remove children 5 and under from the study of 353 families and the percentage of instances increased to 35%.  That number jumped to 50% for children in grades 6th through 12th.  The study also indicated that most of the bullying came in a verbal form of teasing and harassment, but 35% of the bullying involved actually take on a physical form.

I'm not surprised, and preparing Abigail to deal with possible physical threats from her own peers is something that I intend to address as she gets older.  I've already had to soothe tears over a verbal taunt.  Last year in 1st grade one of her friends was in a grumpy mood and told Abigail that she would wave her peanut butter and jelly sandwich in her face if she didn't play what she wanted.  Right or wrong, at the time, I didn't report the incident to either the teacher or the friend's parents.  The little girl was 6, and giving her the benefit of the doubt, she probably had no idea of the implications of her taunt.  I did explain to Abigail that had she actually put the sandwich up to her face, that would have been a different matter entirely.  We also talked about how in general she should stand up to her peers and not do something she feels uncomfortable doing because of a threat.  We're still working on that lesson.

Most of the the bullying does come from other students, but the study reported that 20% of those families asked had experienced teasing and/or harassment from teachers or other school staff.  We can relate to that also.  In Kindergarten, Abigail's teacher made a very insensitive remark that left Abigail feeling betrayed by a really important role model, and me just downright angry.  I'm sure the teacher never gave the remark a second thought, but it was a topic of discussion for quite a while in our house.

I haven't figured out the best time to inform Abigail that someone might actually purposely try to harm her by using her food allergy against her.  I'd like to keep that innocence a little while longer.  I'd love to hear how some of you handled that discussion.

So, what happened to the teenager in Washington that wiped peanut butter on the peanut allergic student?  He was suspended from school, faced an assault charge and spent 4 days in jail.  When asked why, it was reported that he didn't understand the seriousness of the allergy.  Do we all find that hard to believe??  Because food allergies are a daily part of our existence, I'd immediately say yes!  But, how many people do we run across on a daily basis that just don't get it??

I started out writing about food allergy bullying, but am ending by stating that if there was more food allergy education, and if kids, their parents and the community as a whole better understood the potential life-threatening results of waving a sandwich or smearing peanut butter on the face of someone who has a serious food allergy, then society would have to stop using the term "bullying" and start using verbage like physical abuse, cruelty and assault.

Not your normal product recall!

Recalls of products due to undeclared food allergens are usually no laughing matter, but I must admit that this recall listed on the US Food and Drug Administration website had me laughing out loud.  It was a rare moment of being able to see humor in the all too serious nature of food allergies. 

Suzipoo Issues Allergy Alert on Undeclared Allergen in Lobster Poo

Contact:
Sue Pollard
207-251-0523

FOR IMMEDIATE RELEASE - September 22, 2010 - Suzipoo Ogunquit, Maine is voluntarily recalling Suzipoo Lobster Poo, 4 oz bags, because it may contain undeclared peanuts. People who have an allergy or severe sensitivity run the risk of serious or life-threatening allergic reaction if they consume these products.

The product is in a small plastic bag with a red bow on the bag and the label on the front reads. "Lobster Poo" – Slogan – I went to Maine and here's the scoop I came back home with Lobster Poop.

Product was distributed to three retail stores in Maine from August 1-August 18, 2010. Each store has been visited and product labeling has been corrected. Ten- 4 oz. bags may be incorrectly labeled.

No illnesses have been reported to date.

The recall was initiated after it was discovered that product (burnt red peanuts) was distributed in packaging that did not reveal the presence of peanuts.

Consumers who have purchased the product are urged to return it to the place of purchase for a refund. Consumers with questions may contact the company at 1-207-251-0523.

So, if you've been to Maine recently and purchased a sachet of lobster poo...please handle with care!

Sorry, Suzipoo, that I'm so easily amused.  Hopefully all of the additional publicity has been a blessing in disguise.

Changes are Coming!

Sorry, I'm not writing an exciting post about new allergen labeling regulation requirement changes or new policies mandating companies segregate their manufacturing processes for nut products or that there's been a huge change and a new trend is emerging and food allergies are on the decline.  Nope, nothing as exited as news of any of those changes would be, but changes are definitely coming for my family.  My husband has a wonderful new job, and we're moving.

After several weeks of keeping secrets, talking behind closed doors or in code, we finally broke the news to Abigail and now to our friends.  As sad as it's going to be to leave behind a house that has been our home for 12 years, a wonderful church, fabulous friends and neighbors, a nice community and great schools, we're looking forward to a new house, new opportunities, new adventures and a new town.  The move keeps us within our home state but puts us closer to both sets of parents/grandparents, closer to Duke and in a really nice region.

Actually, Abigail took it much better than I expected.  She's been asking to paint her room pink for a while now, and she'll be able to in the new house.  She also is envisioning a decor of peace signs, hearts and stars.  If that's all it takes, I'll happily accommodate!  It's going to be very hard to leave school mid-year, but I remind her repeatedly, that she's fabulous at making new friends, and that she's lucky because she'll have her friends here to e-mail and Skype and have a bunch of new friends there.  The move only takes us about an hour drive away from where we are now so visits aren't out of the question either.

What the move means for me, is that I'm busy every waking minute of the day.  We've accumulated a lot of stuff in the last 12 years of living in this house.  I'm in mass purge mode.  So, while taking large loads to Goodwill, I'm still packing up boxes to take to a storage unit in an effort to better "stage" the house....and be able to park a car in the garage!  Then there is the painting, cleaning, flooring, landscaping...ugh!!  It's all a bit much.  I'm anxious to get a "For Sale" sign up so we can start house shopping!  That's the exciting part for me.

Big changes are in store for us. While I can't quite report that yet in regards to food allergies, changes are in the works.  We've got to believe that doctors and scientist aren't too far away from determining why there is such an increase in the number of kids and even adults who have food allergies, and then determining what changes need to be made in our diet/lifestyle to avoid new allergies.  While it doesn't sound like a cure for food allergies is close by, at least with all of the clinical trials taking place, it does sound like a change will happen soon to allow us to better manage our food allergies, particularly life-threatening food allergies.  So, yes, changes are coming!

Cool offer from Annie's

One of our favorite brands is Annie's Homegrown.  When I decided to eliminate Pepperidge Farm Goldfish crackers from our diet because of the artificial colors and ingredients, we switched to Annie's Bunny crackers and cookies.  We love all of the flavors: cheddar, white cheddar, whole wheat, graham, chocolate and chocolate chip.  The macaroni and cheese products are also a favorite at our house.  I like their canned pasta, but don't purchase them often.  Annie's admits that they're still using cans with a BPA lining, but are in the process of exploring alternative packaging.

While not 100% organic, I do feel that Annie's is a good compromise.  There are so many organic products that are manufactured using the same equipment or in the same facility with peanuts/tree nuts, that we are quite limited in our selection of healthy snacks.  Annie's has a great allergen labeling policy, and I feel good about letting Abigail eat their products.  Here's what their website states: 

While there has been no product reformulation or change in manufacturing facilities, Annie's Homegrown has recently decided to go above and beyond FDA requirements and include an allergen statement on all of our products that are manufactured on shared equipment with any of the top eight allergens. Our manufacturing facilities meet with the highest standards of cleanliness, and we maintain all allergen cleaning, and Quality Control protocol on file. We recognize the needs of our customers who have allergies or sensitivities to nuts, gluten, certain spices, etc. Annie's always fully discloses all ingredients on the ingredient statement and will answer any questions that will help consumers decide what products they can safely consume. At Annie's, we take every precaution to ensure that cross contamination of ingredients does not occur in our production facility. We run the products in a particular order to reduce the risk of cross contamination, take the equipment apart and thoroughly clean it in between runs of product. However, we want you to know that some products are produced in a plant that processes foods containing wheat, dairy, soy, peanuts, tree nuts, fish, crustaceans/shellfish, and egg. This is why we voluntarily chose to update our packaging to include this allergen information.

Right now, they have a cool offer.  You can go to their webite at http://www.annies.com/konserve and with 2 UPC codes from any of their products, receive a reusable and waste-free lunch sack.  It's probably not cool enough for Abigail to take to school, but it's still fun to receive free products, especially when there are no hidden obligations.  And, I'm not too cool to use it for snacks for my son and me.

 

If you're like me and always looking out for the best price, then you might be interested in knowing that Target has the lowest price in my area.  Super Target has the best selection.  They also put them on sale from time to time, and then I really stock up.  Just last week, all of the crackers were $2.00 a box, the pasta was $2.00 a can, and the mac 'n cheese was $1.00 a box.

Just an obligatory note...while it would be great if Annie's was sending me a bunch of free product or some type of compensation, they're not.  I just like to highlight products that I feel meet my high standards and that are safe for people with peanut/tree nut allergies.  Like always, be sure to check the food allergen statements on the box.

First Day of School was "Great!"

Abigail got off the bus last Wednesday, the first day of school, all smiles.  What a relief to hear that the first day of school was "great!"  The last couple of days have also been successful with the making of new friends, learning a new schedule and getting back into a routine.  I'm so pleased that everything is going smoothly for her.  These early days of school really can set the tone for the entire year.

Apparently, there are actually four kids with peanut allergies in her class.  It makes me wonder if the school system decided to put all of the peanut allergy kids within a grade level together this year. Abigail did tell me though that she's the only one with an EpiPen in the class.

I've been pretty impressed so far with Abigail's teacher. She came home with stories about how her teacher is using a Clorox wipe to clean the section of the table where they eat and then having each of the kids in the class use a wipe to clean their hands on the way out of the cafeteria back to the classroom.  I had told her teacher that hand sanitizer does not remove the peanut allergen, that only hand washing and wipes work, but didn't make any specific requests.  FYI, if you want to share this information with your child's teacher, here's a link to a Johns Hopkins study with the details.    

I will say, I was a bit taken aback on Friday when I was e-mailing her teacher to confirm a date to come in and talk with the kids.  Apparently, changes have been made within the county school system requiring permission from the parents.  Per the Principal, she asked that I draft a note that would go home with each child stating what I intended to discuss that they would then sign giving their permission for their child to listen and participate in a food allergy discussion....or not.  Granted, I may have had too grand of plans with a possible showing of a video, discussing the FAAN "Be a PAL" brochure, passing around the Epi trainer and then handing out a certificate, but I was in the process of scaling back.  After previewing the video (I'll review it in another post), I'd decided not to use it.  I also thought that it might be better to give the certificate to each child at the end of the school year like last year.  I haven't drafted a note yet.  That request really knocked the wind out of my sails.

Oh yeah, I also got a phone call the first day of school from the nurse.  As soon as she identified herself, I realized my mistake.  I'd spent hours pulling together the necessary medicines, documents and meeting with the teacher, but had forgotten to include the nurse in any of my preparations.  After thinking I'd dotted all "i's" and crossed all "t's", I was back at the school last week, completing a separate action plan and making amends with the nurse.  You'd think this whole process would get easier each year!

I can really sympathize with a mom's feeling of anxiety over sending her food allergic Kindergartner to elementary school for the first time.  It's over-whelming even for a seasoned mom.

Back to School with a Peanut Allergy

Is everybody ready for another school year to start?  Today was finally the turning point for me.  Up until today, I was a little melancholy that the summer was coming to an end.  I feel we've been so busy that we've not had enough time to just relax and play.  But after yet another day of donning my black and white striped shirt to referee yet another disagreement between my 7 year old and 3 year old, I decided it was time for the kids to go back to school.

I met with Abigail's 2nd grade teacher this morning to discuss her peanut allergy.  For the first time since she started school, preschool included, there is another child with a peanut allergy in her class.  Her teacher had not yet met with his parents, so I wasn't able to discern how serious his allergy was or if the parents were super, super vigilant or really low key (I tend to come in somewhere in the middle...cautious, safe, but with the attitude that she still has to live her life to the fullest).  I think it will be good to have another child with a peanut allergy in the class unless either his allergy is not as serious or his parents don't take it as serious and then the students might receive mixed messages, i.e., why is it okay for him, but not Abigail? 

Like last year, this morning I took in a letter of introduction to send home to the parents of her classmates, a Peanut Allergy Action Plan, a list of peanut safe snack/treat suggestions, an Epi Pen practice injector (which wasn't required because her teacher carries one for her own bee sting allergy) and some ideas for a class discussion on food allergies.  This year for the first time I'm going to go into the classroom at the start of the school year and review the "Be a PAL" (Protect A Life) brochure with Abigail's classmates.  I've found a food allergy word search puzzle that they can take home, and if the video is any good, I'll also take in the "Arthur: Binky Goes Nuts" video for the kids to watch.  I checked it out from our public library today and will preview it tomorrow.  I'm also thinking about taking in some snacks to show them how to read the label, and maybe, if it wouldn't embarrass Abigail too much, an expired Epi Pen and an orange to let her show them how to administer it.  I'm wondering if 2nd grade is too early for that?? Lastly, I'll have a certificate ready for each child, also from the FAAN site which names them "Hero's" for looking after their friend's safety.

But, it doesn't end there.  We have a letter ready to give to both her morning and afternoon bus drivers along with a copy of the Peanut Allergy Action Plan, I have school medical authorization forms for the antihistamine and Epi Pens at the pediatrician's office to be signed, I'm waiting for a new prescription to be called in to replace her soon-to-expire school Epi Pens and I've purchased more antihistamine fast melt tablets for a still-have-to-be-packed medicine bag.  And, just one more day left to get it all done!

What I haven't done, and probably won't is complete a Section 504 Plan.  I know lots of moms that do, and if Abigail had multiple food allergies, or if her school was unaccommodating, then I probably would.  If you're unsure, the Food Allergy Initiative site is a great resource in determining whether you should and for giving lots of information to better understand the details of the law.

One more day of summer, and then it's back to school for my big 2nd grader.  I'm hoping it's a fun and peaceful day.  If you're interested in all of the forms I mentioned, be sure to check back in the next day or so.  I'm hoping to set up the links in a separate column to the right of the posts.  Good luck this year!

Columnist Changes Tune

Pick an adage, "open mouth, insert foot", "eat crow", "change in tune", "what goes around comes around", they all apply to columnist Joel Stein.  Back in January of 2009, he wrote an opinion article for the Los Angeles Times titled "Nut Allergies - A Yuppies Invention."   Here's his opening paragraph.."Some kids really do have food allergies.  But most just have bad reactions to their parents' mass hysteria.  Your kid doesn't have an allergy to nuts.  Your kid has a parent who needs to feel special."  Lovely, huh?  Glad I missed it.

Mr. Stein recently had a follow up article published just last week in Time titled "Aw, Nuts!" in which he describes the experience of having his 1 year old son eat some mixed nuts and then rushing him to the emergency room with symptoms of hives, swelling eyes and vomiting.  Yes, his son has a nut allergy.

There was a lot of backlash from the food allergy community to Mr. Stein's first article.  Having just read it this week, I can understand why.  I'm not going to go into a detailed review of his article, you can read it and see.  It's funny that the part that rubs me wrong references the same study that I did in a past post (http://peanutclinicaltrial.blogspot.com/2010/03/allergic-reaction-anxiety.html). It was a study done in 2003 regarding allergy anxiety.  It showed that kids who were told they were allergic to peanuts had more anxiety and felt more physically restricted than if they had diabetes.  I referenced the study to indicate how hard it is to help children with life-threatening allergies to remain well-adjusted.  Mr. Stein used the study as a follow up to his comment, "Parents may think they are doing their kids a favor by testing them and being hyper-vigilant about monitoring what they eat, but it's not cool to freak kids out."

Cool or not, as parents, we are doing everything in our power to keep our children safe, and if that means that our kids need be taught to monitor everything they eat, then so be it.  Obviously, this statement came from a time when Mr. Stein didn't understand the reality of living with a life threatening allergy.

I wish the best for him and his son.  They've got a long journey ahead.  Having a severe food allergy is no walk in the park for either the person with the allergy or their family.  Having a food allergy and a dad that has nationally "opened mouth and inserted foot" is going to be quite the challenge.

Summer's Bounty

I have just a small, organic garden, but it's produced a great summer bounty.  I just took a quick picture of what's sitting on my counter right now.

It doesn't include what's in my fridge.  Just goes to prove that you don't have to be an expert or have a ton of space to grow fresh veggies.

Here's before and after pictures of the garden space. It's just 3 feet by 12 feet.  The fence is only necessary if you have wildlife, i.e., rabbits or "lots of help", i.e., a 3 year old.  I felt really silly having my husband drive 8 foot posts in the ground for my tomatoes, but I've actually had to cut out some of the top branches and tie them up because they've started hanging over.

This year I added a smaller 2 foot by 6 foot space and put additional zucchini and squash plants as well as canelope and banana peppers. Obviously, the melon (my first ever) was quite happy and tasted super good!

So if I haven't been posting like I should, my garden is to blame.  I have to cook or freeze what I've grown.  This wasn't the summer to learn to can or preserve.  Maybe next year?

Organic Milk...Better for you and improves allergy symptoms.

There's a link between drinking organic milk and the reduction of allergies and eczema. In an article entitled Organic Milk Linked to Fewer Allergies Including Eczema and Asthma, the author references a Dutch study that suggests that children are one third less likely to suffer from allergies before age two if they're raised on organic dairy products.  Both child and breastfeeding mom were given organic dairy products, and the researchers found that there was clear evidence of less incidences of eczema as well as a decrease in the risk for other allergies and asthma.

I've written about this in a prior post, but when Abigail was a newborn, her cheeks were red, raw and inflamed.  I was breastfeeding, and as soon as I eliminated dairy (non-organic at that time) from my diet, her cheeks cleared up.  When we started her on formula, we gave her a soy-based formula and when it was time, gave her soy milk.  By the time our second came along, we had made the switch to organic foods.  He also showed an intolerance to dairy, but instead of soy formula, we used a lactose free formula.  He does still drink organic soy milk but eats organic dairy products.  Interesting that Abigail has the peanut allergy, had bouts of eczema and was frequently on Albuterol or Pulmicort for wheezing.  Our son did have regular ear infections until tubes, but still shows no signs of any sort of allergy.

According to the article, researchers believe that organic milk may be better due to the higher concentrations of conjugated linoleic acids (CLA).  Wikipedia states that "meat and dairy products from grass-fed animals can produce 300-500% more CLA than those of cattle fed the usual diet of 50% hay and silage, and 50% grain.  CLA is also known for it's anti-cancer, body weight management, anti-inflammatory and cardiovascular improvement properties.

Organic milk also has as much as 71 percent more omega-3 fatty acids.  Omega-3 is a alpha linolenic acid (ALA) and is most commonly found in flax seed products and cold-water fish.  You've probably seen products containing DHA and EPA fatty acids which are also omega-3 acids and both have significant health claims.  The omega-3 acids are known to support the development of brain, eyes and nerves, reduce the risk of heart attacks and strokes, have significant anti-inflammatory benefits that promote immune system enhancements and provide anti-cancer effects particularly for breast, colon and prostate cancers.  According to Wikipedia, recent studies are also showing a positive benefit of omega-3 fatty acids for ADHD as well as psychiatric disorders. So, if there was ever a case to switch to organic milk, this is probably it.

I don't pretend to understand the science of milk production, but wanted to pass on one last thing that I learned.  I've recently started purchasing organic milk that comes from a small, family-owned farm.  It's pasteurized to the point where it meets state laws, but not beyond that.  First off, it tastes wonderful.  Second though, is the claim that many lactose intolerant people can drink it without issue. Wondering why, I searched the internet.

According to a paper I found written on the subject of lactose intolerance the problem is mostly limited to the US.  The author writes that the stripping of nutrients in the pasteurization process causes lactose intolerance.  She writes that the " intolerance is caused by a lack of the enzyme lactase in large enough quantities within the human digestive system to break down lactose, a fairly complex disaccharide found in milk.  Raw milk contains harmless bacteria which produce lactase which, in turn, enables the human body to break down and absorb lactose.  Pasteurized milk has had all of these bacteria killed off and is therefore lactase-free, but still contains lactose, causing problems for many people who try to drink it."  Apparently, there are also studies tying pasteurized milk products to decreased bone density, weakened tooth enamel, vision problems (from vitamin B6 insufficiency), and to a large increase in asthma.

What I've taken away from all of this is that while organic milk is best for everyone, if your family is prone to allergies, eczema and asthma, organic milk is even more important, especially milk that is not ultra-pasteurized.  Minimally pasteurized milk is even better if you have access to a local dairy.  Second, essential fatty acids are very important in our diet.  I've found chewable omega-3 supplements that are peanut/tree nut safe for Abigail and have started adding flax seed to my baked goods.

Just one last CIA statement...as with all supplements, do your own research, contact your physician if you have any questions, and this should go without saying, if you have a fish allergy, make sure you're getting omega-3 from a non-fish source.  Readers with life-threatening milk allergies also shouldn't enjoy the benefits of organic milk.

Not all Sunshine & Roses

There can be a darker side to participating in a peanut clinical trial as a mom in our community recently discovered.  We had a "sunshine and roses" food challenge experience, i.e., it was all good.  Her and her son....not so much. With her permission, I thought it important that you hear her story.  And, don't worry, it's not all doom and gloom.

They had a rough go of it right from the start.  Her son was one of the original and unlucky participants in the SLIT trial at Duke that was impacted by a lab snafu and had to re-start the trial.  This was after having already driven back and forth for months.  She lives a couple of towns over from me, and it's a long drive.  I can attest to how horrible it would have been if Abigail had to start over.  In her son's case he had been on the placebo drops and would have had to begin again anyway.  In my opinion, I think that's somewhat a blessing.  I think it would have been even harder to bear if a child had been on the peanut protein and still had to start over.  Fortunately, these children were guaranteed that they would receive the peanut protein drops when they re-entered the study.  Needing a break, they didn't immediately re-enter and ended up starting back after us.  So, with Abigail's food challenge success fresh in her mind, they showed up for their 8 a.m. appointment.

He received the placebo during the morning challenge.  During the peanut flour challenge that afternoon, all was going well, and he was showing no clinical signs (rash, hives, runny nose, stomach pains, vomiting, etc.) of a reaction.  By the next to the last dose though his mom's gut instinct was kicking in, and she was ready to call it quits.  It was that final dose that did it, and her son went into full anaphylaxis.  From her account, our doctor and nurses handled the situation fabulously.  They gave him Benadryl, and were ready to wait to see if that was enough.  Seeing her child the reddest of reds, covered with baby hives and having difficulty breathing, she insisted that they give him an epinephrine injection.

Having made it through all the doses, I can just imagine the shock of seeing the worst of reactions with no signs leading up to that point.  Our doctor recorded that he was able to tolerate 8 of the 9 doses.  Her question though, and a very valid one, is what if it was a delayed reaction?  What if given more time between dose increases, he would have had a reaction at a smaller dosage?  Without another food challenge, it's probably impossible to say. And, given her experience, she confirmed that that wasn't going to happen again anytime soon.

Now, for the positive.  Bottom line, he was able to consume peanuts, and with a starting IgE number of over 200 that's significant.  He probably could even consume enough to eliminate considerable worry about the possibility of cross-contamination.  And, more importantly, her son is no worse for the wear!  He still takes his drops without worry.  Can't say the same for mom.  She's a little traumatized over the whole experience and says knowing that after consuming an unknown amount of peanuts, he can go from 0 to 100 without any type of warning had her doubling the amount of Epi Pens they kept on hand.  She also feels guilt over having put him in that situation to begin with.

They're sticking with the study. Like us, I think they feel blessed that they do have the opportunity to participate.  I know so many of you readers pray for that time when either the end results of these clinical trials are available for you or your children or such time when a clinical trial comes to a location nearby.  We do this with the full realization that we're providing our children a different path down life's very difficult journey.  Having had to experience an anaphylactic reaction really stinks, and it's not something even our doctors want to have happen.  But, in her case, it was part of providing that different path...that path to becoming peanut allergy free!

Summer Time!

I think this is been one of the longest times between posts since I started my blog.  What's my excuse?  Summer!  The kids are home, and if they're not off making a mess and getting into something they shouldn't (specifically my 3 year old son), they're fussing or fighting, needing a snack, complaining about being bored or wanting to go somewhere.

There was the food challenge at Duke, then Vacation Bible School.  After that, we started potty training my youngest.  It went surprisingly well, and so far no pee pee accidents.  Can't say the same for the other.  Regardless, it's a huge time commitment.  I also made a promise to Abigail that she would be able to swim the length of the pool by the end of the summer so there's been swimming lessons for her and my youngest (he wouldn't even get in the water 2 months ago) and trips to our neighborhood pool to "practice".  Can't forget the shuttling to summer camps, special outings and play dates which all require time away from the computer.  I've started a training certification program which I'll write about in more detail later.  And last, but not least, the garden.  I love having a garden, but my goodness, it's a lot of work.  There's definitely a science behind gardening, and I haven't come close to mastering it.

Anyway, I haven't forgotten you guys.  I hope you are also enjoying your summer. I really shouldn't complain, we're having a great time.  We're being inundated with reminders that school is just around the corner, and I'd like to savor this time a little longer.

Look what we found!!

During our food challenge at Duke a couple of weeks ago, our nurse mentioned that she had purchased a candy bar made with sunflower butter at World Market.  The other night we were in the area of our local World Market so we stopped in to see for ourselves.  Look what we found!!

Nut Free Sun Cups!  Remind you of anything??  What a treat!  Abigail has never eaten a Reese's Peanut Butter Cup, and I can't remember the last time I have eaten one either.  But, this is no ordinary chocolate treat.  It's made in a nut free facility, is organic and is gluten free!  Seth Ellis Chocolatiers in Boulder, Colorado took it a couple of steps further.  They use Fair Trade chocolate, the Sun Cups are Kosher certified and the foil outer-pack is home compostable.  I mean...wow!  Here's the link to their spec sheet if you want to see the full ingredient listing.  By now, though, you are probably wondering how they taste.

The Sun Cups are available in both milk and dark chocolate.  We sampled the milk chocolate cups first (actually they're a blend of both milk chocolate and white chocolate).  Now mind you, we (my husband, son and I) eat sunflower seed butter on a daily basis so we've acquired a taste for it.  Abigail will occasionally eat some on a cracker, but it's not a staple food for her like it is the rest of us.  As to be expected, the cups have a slight sunflower seed taste, but the chocolate is nice and firm, and it's not oily in the center like it's peanut butter counter-part.  Abigail loved them both, but my favorite was the dark chocolate. To me, it had a more rich chocolate taste than the milk chocolate Sun Cup.  They were a hit with all of us, and we had to refrain from opening more packages.

I contacted Seth Ellis Chocolatiers to get some more information.  You can currently purchase these online at www.peanutfreeplanet.com and while Amazon.com has them listed, they're not yet available.  When they told me that World Market is not going to continue stocking them, I took the kids for a little shopping spree (maybe if everyone went on a shopping spree, World Market would change their mind).  The list price for the Sun Cups at World Market is $1.99, but this last weekend they rang up at $1.50.  Today when I purchased them, they were $ .99.  Seeing that, I doubled what was in my basket.

I had another thought as I piled over a dozen packages in my basket today.  If all of our prayers are answered, in another year and a half, Abigail will be through with the clinical trial, and we will be adding peanut products to her diet in order to maintain her tolerance.  One of the issues for children coming out of the clinical trial is that they dislike the taste of peanuts...call it a self-preservation instinct...yet they have to consume a certain amount on a weekly basis.  At some point, I'd planned on eventually working sunflower butter in Abigail's diet so that she'll hopefully have an easier time acquiring the taste for peanuts.  Considering she scoffed down a Sun Cup immediately upon getting in the car today after our shopping spree, this is definitely one way to start.

Cross-Contamination Concerns

The last couple of weeks, the peanut allergy message boards have been full of posts discussing companies' labeling policies.  One post that was concerning involved a teenager that had an anaphylactic reaction to Hershey's Rolo Caramels.  Someone responded to that post stating that she had spoken at length with a supervisor at Hershey's.  He told her that the majority of their products were manufactured on shared equipment with peanuts/nuts, and that the 1.5 oz Hershey bar was the only one made on a dedicated line.

The Hershey's allergen statement on their website reads as follows: "We take food allergies very seriously at Hershey and have strict procedures in place to prevent crossover of allergens into other products that do not contain the allergen. In instances where we have a concern about possible crossover by an allergen we take the added precaution of including an allergy information statement on the label."

Now my question is how many companies use shared manufacturing equipment, clean it and consider that they've removed all possibility of allergen cross-contamination??  It you believe Kashi's website information, it's impossible to remove all traces of peanut/tree nut..."Scientific evidence has shown that consumers with peanut and tree nut allergies can have a severe reaction to amounts that are below the current detectable limits based on existing technology."

I spent over 2 hours the other night searching the internet for some study or article that would validate either position, and didn't come up with much.  I did find the issue well stated in a 2008 study introduction published in the Journal of Food Protection, "Although allergen removal through cleaning of shared equipment or processing lines has been identified as one of the critical points for effective allergen control, there is little published information on the effectiveness of cleaning procedures for removing allergenic materials from processing equipment. There also is no consensus on how to validate or verify the efficacy of cleaning procedures."  Now, if I could only get access to the results of that study!

I found a ton of food industry articles on how to manage food allergens in the manufacturing processes as well as information on the type of tests available to test for allergen residue on equipment. A group from the University of Florida studied the effectiveness of commercial allergen test kits.  Their results were that the three common cleaning protocols regularly used in the food industry did not yield the same results. Some were better than others.  Does this mean that food allergy savvy parents need to ask what test kit a manufacturer uses to verify that there lines are clean and that there is no chance of cross-contamination?

In 2001, the Senior Health Policy Adviser for the Grocery Manufacturers Association offered testimony on the challenge of labeling food allergens. The speaker addresses the challenge of cleaning ingredients like peanut butter on manufacturing equipment.

Still in disbelief!

I'm getting lots of e-mails, Facebook postings, blog comments and excited greetings.  I can't thank you guys enough for your support.  Truth be told though, I'm still very much in disbelief and not quite sure how to express my feelings about the success of the food challenge.

Realistically, nothing changes. Abigail still takes her 8 drops a day, holds them under her tongue for 2 minutes and can't eat 15 minutes prior or 30 minutes after. She'll continue to do this daily for at least another 18 months until the end of her treatment.  We're to make absolutely no changes to our eating habits which means I'm still reading every label and our family will continue to avoid unsafe restaurants.  Abigail will still bring her own cake to birthday parties, we'll still ask friends and family to not have peanut products sitting out when we visit and I'll still meet with her next year's teachers and classmates and put the same protection policies in place at school. We're to always have her Epi Pen and Benadryl handy.  In other words, we continue to live day to day under the assumption that there's always a chance for accidental exposure.

I know that at some point her passing the food challenge with flying colors will set in.  I think that at some future time, even if I can't relax regarding what she eats, maybe I'll relax when it comes to social settings. Those situations that I currently give my o'kay, but worry about.  For example, lunch time in the cafeteria at school.  I worried about her sitting in the same spot that someone eating a peanut butter sandwich just vacated.  I worried at family functions when there was a safe dessert tray and an unsafe dessert tray.  I worried about friend's birthday parties, sleep-overs, church events and camp.  And, that list goes on and on.  You can't do that much worrying for 7 years and have it go away over-night.

It's really an emotional roll-coaster.  I'm sure it's confusing to Abigail as well.  She ate the equivalent of almost 10 peanuts.  Her doctor is smiling from ear-to-ear, she's getting hugs and treats, told how brave she is and then, by the way....you still can't eat anything with peanuts.

So, with some reserve, we're celebrating in the short term, but we're also still looking forward to the long-term.  There's quite a journey ahead with lots of unanswered questions.  Maybe a few more days of congratulations, and then I think we have to file this experience away until such time when we can truly celebrate.  I really think the best part of our food challenge experience is to know with confidence that we are getting the real stuff and not the placebo, that the SLIT methodolgy is working, that our time is not wasted and that we made the right decision to put Abigail through all of this.

Thanks again everyone for your support.  I attached a few pictures from our day at Duke.

It's 8:00 a.m. and Abigail is ready, although somewhat nervously, for her big day at Duke.











I've included these pictures so you can see the difference in her skin prick test between this week (1st picture) and her skin test in January.

I.V. is in and we're ready to start the food challenge.

Of course there were lots of treats.  Here we are enjoying a new DS game together.

This is it.  Last dose of the day.  She doesn't look any worse for wear does she?