It Has Been A Whopper (No Cheese) of a Food Challenge Month--But, Certainly Worth Every Minute!

Well, if you live with food allergies, you simply get used to the disappointments that come with the diagnosis, the day-to-day management and the annual testing that usually yields much of the same--"I am sorry, but you are still allergic to" this or that.  As our kids have gotten older, the doctors have given us less and less hope that our kids will outgrow their allergies.  Well, here is our good news: 

Each of our three children had one or more food challenges in the last few weeks (i.e., spending 4 hours at the allergist's office eating increasing amounts of the food being tested and waiting to see if their is a reaction).  Their bloodwork numbers to certain foods were in range that made the doctor comfortable for us to give them a try.  We had already experienced 2 unsuccessful food challenges several years ago when our oldest started to react 3 hours and 40 minutes into the challenge, so I was not getting my hopes up. 

First, there was Emma, our 5 year old.  Now, Emma is crazy allergic to dairy and egg, including airborne egg reactions. But, unlike our older two, she had always tested negative to peanut and tree nuts.  Her older sister started out testing negative, but that changed over time and by 4 years old (after several mystery reactions involving significant hives and breathing restriction), she was diagnosed with a peanut, tree nut and seed allergy.  So, the fact that Emma was still negative, although encouraging, was not a slam dunk by any stretch.  This combined with the fact that our doc recently had 2 or 3 patients who had also tested negative to peanut end up having an anaphylactic reaction when they tried it.  Anyway, after 4 hours of eating peanut butter and bracing myself the whole time--NADA!  Not only is she fine with it, but the doc wants her to eat it at least once per week to help maintain her non-allergic status.  So, although her dairy and egg are still incredibly challenging to manage, we are so excited that we can slip her some peanut butter on the side (obviously without her allergic siblings anywhere nearby) and, of course, her world is now open to all of those products with nut warnings (as long as they don't have egg/dairy, of course)!

Next, our oldest, who started out allergic to 13--yes, 13 foods (peanut, tree nuts, milk, sesame, flax, egg (outgrew @ age 9), wheat (outgrew @ age 5), oat (outgrew @ age 5), raspberries (outgrew @ age 5), sunflower (age 10), mustard (age 10), barley (age 10), peas (don't recall) had successful food challenges to mustard, sunflower seed and barley!  Although these may not seem like game changers—they really open up a lot of things for us (mustard is in so many sauces, dressings, certain canned beans, tons of recipes, and just being able to use it as a condiment; sunflower butter--great substiute for peanut butter and a great way to avoid eating so much soy, which has been too much of a staple for us over the years; and barley, which is in almost every bread and pretzel product known to man (and woman).

Finally, Kori, who has been our least allergic in terms of number of foods to avoid (peanut, tree nuts and seeds), had a successful sunflower seed challenge.  It was quite funny--we food challenged all three kids to sunflower seed at one time, a first for our allergist’s office--which had never had 3 patients in one food challenge session. And, they all passed!  I ran home and made some homemade sunflower butter and roasted sunflower seeds for them. Really tasty (you ask why not give them store bought sunflower butter—well, Max and Kori are allergic to flax seed and there is a risk of cross contamination because another variety has flax seed in it and it is run on the same line; I am waiting for Trader Joe’s to get back to me on whether this is an issue on their brand; may be the same brand under private label, though)!

So, although we still have a number of them left, and they are very serious, we are thrilled to add these ingredients into our diet. Of course, as if life wasn't already confusing, now they have very different allergies, making things like packing lunches, cooking and preparing for birthday parties a little more tricky.  I feel strongly that, other than family meals, which are always safe for everyone, that they should be able to eat foods that work for them even if their siblings cannot (of course, not if they are airborne!).  They are getting older and they are already so limited in what they can eat.  I take extra special care during food prep to avoid cross contamination. Although the job just got harder in many ways (hard to believe that fewer food allergies can be more challenging than more food allergies), I welcome the challenge!

I hope that our recent successes will give you hope for similar successes for you and/or your kids!

If you ever need help working through your family's allergy struggles, please be in touch through my contact page.

Peanut menace? Bullies Use Food to Torment Allergic Kids

MSNBC reports that a new study shows 1 in 4 young adults has been harrassed, teased or bullied because of their food allergies.  Bullying of the food allergic is not a new phenomenon.  The article recalls that two years ago, a Washington high school student was charged with assault after smearing peanut butter on the forehead of a fellow student knowing that he had a peanut allergy.  With the rise in food allergies, so, too, have the incidents of bullying because of them.  While a typical bullying situation is challenging, this type of behavior can cause not only the extreme fear and emotional distress that often accompanies bullying incidents, but, if threats are carried out, this behavior can also lead to a serious, or even fatal, allergic reaction.  Parents of food allergic children should be aware of this issue and be proactive by increasing efforts to educate others about food allergies, particularly in the school setting.  To read the full MSNBC article, click on the following link:  http://www.msnbc.msn.com/id/39389689/ns/health-allergies_and_asthma/

Lifetime Television Features Segment on Food Allergies

Yesterday, Lifetime Television's The Balancing Act explored the topic of food allergies, featuring interviews with the Food Allergy and Anaphylaxis Network's (FAAN) Child Ambassador Leandro de Armas; Brian Hom, who tragically lost his son as the result of a fatal food allergy reaction; and Maria Acebal, the FAAN Vice President of Research and General Counsel.  Most powerful, is the story of Brian Hom's son--which is toward the end of the segment.  To watch, click the following link:  http://thebalancingact.com/story/?id=2012.

Pediatrician Weighs in on Food Allergies: Food Allergies and Your School

Our pediatrician Dr. David Kleiner of Pediatrix in the Phoenix area included this article in his practice's newsletter and I thought I would share it with you.  It is always nice to have a pediatrician who really understands.

Food Allergies and Your School

Food allergies are on the rise nationally. As a pediatrician, I am experiencing this phenomenon in the clinic; but I am also living with it. My child has significant anaphylactic food allergies, so I understand this problem on a personal level.

The range of reactions that may occur along the allergy spectrum creates a lot of confusion among people. One person may exhibit mild rash or gastrointestinal symptoms, while another may manifest significant airway swelling that restricts airflow and can be life threatening in a very short amount of time; this is anaphylaxis.

Other hurdles arise when there is a lack of understanding regarding what anaphylaxis looks like. Many health care providers, including physicians, may not have witnessed anaphylaxis first hand to recognize its presentation.

In addition, many people are avoiding foods for a variety of health reasons. Some examples include celiac disease, which is gluten sensitivity; or perhaps, a healthcare provider has recommended a restrictive diet for behavioral or developmental concerns. This further clouds and confuses those who might be caring for or interacting with your child.

As a result, a parent must be their child’s best advocate in the school setting. Schools do have a responsibility to make your child’s school experience as risk free as possible. Parents should request that epinephrine be placed where it may be needed: the cafeteria, classroom and nurse’s office. Providers and teachers in these areas should be trained to recognize anaphylaxis and they should know how to administer an Epipen. It is not realistic to expect young students to alert an adult when in distress or administer an epinephrine shot to themselves.

Parents can advocate for food free or food restricted classrooms. Children do not have to be rewarded with food (as an aside – we are living in a societal epidemic of obesity). In addition, cafeterias can have food allergy tables, where more care and observation can happen for this at risk population. A trained adult should monitor this table.

Remember the squeaky wheel gets the grease. You are your child’s best advocate. Be safe…

Dr. David Kleiner

My Response to Gettleman: A Nut Allergy Skeptic Learns the Hard Way

OK, I admit it—it sometimes takes every ounce of restraint that I have not to wish food allergies on people like Debra Gettleman, who obviously have to get it to “get it” (see Gettleman's article, "Nuts about Peanuts").  Joel Stein understands this all too well.  You see, at the beginning of last year, Mr. Stein, a journalist and regular contributor to Time Magazine (who also makes regular appearances on the E! television network), wrote an article entitled, "Nut Allergies:  A Yuppie Invention" in the LA Times, where he claimed that nut allergies were invented by rich yuppies and that their kids don't have allergies to nuts--"[t]hey have parents who just need to feel special.”  I was shocked at the time--and saddened that someone who was so witty could be such an idiot. 

You can imagine my shock when, lo and behold, Mr. Stein shared with the world in a recent article in Time Magazine that his one year old son had suffered from a severe allergic reaction to nuts. In his article entitled, "A Nut Allergy Skeptic Learns the Hard Way," Mr. Stein contritely shares his remorse for his past insensitivity as he offers a glimpse into what it was like for him to watch his son's allergic reaction ("breaking out in hives . . . crying through welded shut eyes, then screaming and, finally, vomiting copiously at the entrance of the Children's Hospital emergency room an hour after eating his first batch of blended nuts.") 

Mr. Stein, I swear I never wished food allergies on you or your family (although, I admit, that every time I saw you on E!, I rolled my eyes!).  I am actually very sad for your son and for your family.  You see, you will now live in our world--one that not only presents daily challenges to keep your child safe, but one that is also filled with insensitivity and ignorance.     

Nuts about Peanuts

Raising AZ Kids Magazine asked me to write an article about living with food alleriges and then presented the "other side" of the debate.  Here are the two articles (see mine below this article in the next post) . . .


By Debra Rich Gettleman
Raising Arizona Kids, August 2010 Issue

There’s this really sweet mom I know. Let’s call her Kathy. Our boys were in the same second grade class. She’s one of those extremely competent types, always cool, calm and collected. I’d never heard her express a negative sentiment—until one day before our “Fit Factor” class at the gym.

“I cannot cope with this whole peanut butter ban at school,” she said. “I mean, peanut butter is the only source of protein my kids eat. Now, because of some kid’s alleged allergy, I have to stop sending anything peanut to school. It’s ridiculous. This whole allergy thing is totally bogus.”

Kids need to learn how to tolerate each other’s likes and dislikes, she continued. Lots of kids have dietary requirements, but that shouldn’t punish the rest of us. Her kids are quite capable of eating peanut butter without smearing it in the faces of other children or spreading perilous peanut fumes to innocent bystanders.

Living in Fear of Food

By Jennifer Schwarz
Raising Arizona Kids, August 2010 Issue

Imagine what it is like to live in fear of food. This is the reality that we face every hour of every day with our three children: Max (10), Kori (8) and Emma (5), each of whom suffers from multiple, life-threatening food allergies. For them, even the touch or smell of foods like peanuts, tree nuts, dairy, eggs, sesame seeds or mustard can cause serious, or even fatal, reactions. 

Imagine what it is like to watch your child experience a severe allergic reaction. Emma’s throat began to close, inhibiting her breathing, after she ate a store-bought cookie—and another time after eating soy ice cream. Both were supposedly “free” of her allergens. Minutes after eating a sliver of cheese—approximately 1/25th of a slice—our son Max broke out in hives, his face began to swell, he was wheezing and his throat was gurgling.

Thankfully, both times I was with my children. I recognized the symptoms and administered emergency medicine immediately. I often wonder what would have happened if I had not been there. Would anyone have noticed? Would the medicine have been administered in time?

What a Day--Back to School with Food Allergies

Well, even after all of these years, we still face new challenges.  So, our girls are starting a new school (K and 2nd) and we had our "allergy meetings" yesterday.  I have to say that their new school seems to handle food allergies beautifully.  They have systems in place and are extremely understanding and sensitive to the very real risks that food allergic families face everyday.  They embrace these kids and do what they can to reduce the risk of a reaction.  I was overwhelmingly impressed and look forward to a great year there.

And, then there is my son.  So, our 10 year old has lived with extremely severe, multiple food allergies (peanuts, tree nuts, milk and seeds are the scariest, but there are others).  Since Kindergarten, he has been at a private school where they have been so sensitive to his allergy situation.  His grade--now 5th--and the younger grades, have been "nut-free" and the families have been, for the most part, very compassionate and respectful of our dietary challenges.  While I was wrapping up my meetings at the girls' new school, I received a phone call from our son's new Head of School that went something like this:  "Hi, I wanted to let you know that, above everything else, we care deeply about taking care of your son's dietary restrictions to be sure he is safe at school.  We are sending out a letter tomorrow explaining our nut policy and our school will no longer offer 'nut-free' grades."  She said it in a way that seemed as though she thought this would make me jump for joy.  I felt like I had been punched in the gut--only days before the first day of school.

Traveling with Food Allergies

We are a very active family and travel is a big part of our lives.  Given our family's multiple food allergies, you can imagine that this can be challenging at times.  We have learned so much over the years (e.g., dealing with getting meds and food through airport security, successfully bringing items with us that we can't find in stores where we are going, understanding dry ice regulations, how to bring multiple meals for the kids with us to avoid dealing with restaurants, how to send 4 weeks worth of food to overnight camp, finding needed items in city of destination, etc., etc., etc.).  And, it is often the unexpected that can really throw you for a loop (e.g., showing up at the hotel that promised you a refigerator/microwave and now can't provide them!).  From experience, we are now at a place that we know how to anticipate challenges and deal with them when they arise. 

As an example, every year, we take a summer vacation to Tybee Island, GA, and, mainly for cost reasons (and, frankly, because we LOVE the way Southwest Airlines handles peanut allergic passengers and Southwest does not fly into Savannah--the airport closest to our destination), we choose to fly into Jacksonville, Florida--making what would be a 6 hour trip into a 12 hour trip (yes, we are crazy--but, the fares are so much cheaper and we use frequent flier miles!).  When flying, we always plan for delays and because we generally cannot find food that will work for two of our three kids (and don't want to take chances when we are getting on an airplane), we always bring a cooler of food.  Although our kids are not large quantity eaters, for this particular trip, I threw in some extra food.  Thankfully, I did, because our

School is around the corner . . .

Do you have a child who was recently diagnosed with food allergies?  School is around the corner and there are systems to put in place that will help reduce the risk of an allergic reaction. Have you prepared an Emergency Action Plan?  What about Guidelines to Keep My Child Safe?  Have you scheduled a teacher/administration meeting to discuss your child's specific needs?  Do you know what those needs are (e.g., nut-free classroom, limitations on food projects, hand washing protocols, location of emergency meds)?

Click on the following link to view/use some of these helpul and critical tools before sending your child off to school:  http://www.allergicliving.com/features.asp?copy_id=291. 

For additional assistance with advocating for your child or with putting these systems in place, contact Food Allergy S-O-S at info@foodallergysos.com.