THIS BLOG HAS MOVED!

Kelley's UFAN blog is now called "Food Allergy Feast," and it's moved to a new location. Click here to go to it now: www.foodallergyfeast.blogspot.com.

Don't worry -- you'll find the same weekly posts, the same blog author, the same archives... but now it has even more content, links, resources, and other helpful food allergy stuff!

See you there!

Kelley

Egg Replacers

Come see me this Saturday (May 9, 2009, 9 am – 5 pm) at the UFAN booth at the Mother’s Day Garden Fair. It’s being held at Conservation Garden Park, 8215 South 1300 West, in West Jordan, UT. Click here for more info.

In my baking, I’m always on the lookout for great ways to replace eggs so that my son can share his baked treats with his egg- and milk-allergic best friend. This weekend, I finally tried a new egg replacer product that I’ve been hearing about on the UFAN email list for months. It’s called Ener-G Egg Replacer, it's tapioca based, and I found it at Smith’s.

On the back of the Ener-G box, there are several great recipes, including an incredibly simple and allergen-friendly recipe for sponge cake.

On Friday night, I was hosting a graduation party for a friend who just received his master’s degree at Weber State U (and he just happens to be the dad of my son’s egg- and milk-allergic best friend).

So decided to test the sponge cake recipe and turn it into a jelly roll. It worked great! I followed the recipe on the box, then baked it in a 10” x 15” pan. Then I spread the cake with strawberry jelly and rolled it up. Then I frosted the cake with white icing, draped a Fruit-by-the-Foot fruit snack over it like a ribbon, and voila – a diploma cake!

I haven’t tried the Ener-G Egg Replacer in anything else yet, but the cake worked out nicely, so I’m definitely going to use it in my other recipes to see how it works. They have a website with recipes and more products here.

Here are my other tried-and-true egg replacers:

For each egg called for in the recipe, substitute:

• 1 tsp baking powder, 1 T water or apple juice, and 1 T white vinegar – This foams up rapidly (like a science fair volcano), so it’s fun to do with kids and it works great in baked recipes like breads and cakes. This actually works better than the applesauce or banana options, because the foaming action makes breads rise a little better, I think. It’s also cheap and easy, using ingredients you already have on hand. (No dashing to the store!)

• 3 T apple sauce – This works well in cookies.

• 1/2 mashed banana – This works well in cookies (if you want the banana taste). A friend just told me she used mashed banana instead of eggs in pancakes she made using Bisquick’s mix, and she loved it.
  

• 1 T ground flax seed mixed with 3 T warm water – Actually, I’ve never tried this, because people with nut allergies have a higher chance of also being allergic to flax. But I know others on the UFAN mailing list have used ground flax seed with great results, so if you know you’re not allergic to flax, go ahead and give it a try.

Nice Girls Do Ask for Snacks

Baseball practice started this week. Of course, it was cold, windy, and still damp from rain. Hardly baseball weather, if you ask me. But sports wait for no fair-weather moms, so there I was at the local ball field, shivering and hunched against the cold, while my son flexed his catcher’s mitt and chased after wildly thrown balls.

As part of the new season, the coach handed out a schedule, which included practice times, game times, and … treats.

I hate treats.

It’s hard to ask other parents to consider food allergies when they’re providing the treats. It’s still a little embarrassing, even after all these years, to have to speak up and ask that they limit their treat options. All our lives, we’ve been taught to be gracious about food that other people offer. “It’s not polite to ask for food, wait until they offer,” we were told. “Take whatever is offered, don’t turn up your nose at something they’re generous enough to provide,” we were scolded. So trying to tell someone else what they can and can’t bring for game treats goes against all our “good girl” training.

But as the mom of an allergic kid, I have to ignore the “nice girls don’t make a fuss” rule and make a fuss. (Although I try to make it a very nice fuss, of course.)

So as usual, as parents and kids huddled around the coach, when he mentioned treats, I spoke up. “Coach, I know we have at least a couple of kids on the team who have food allergies. If you’d like, I could send out an email to everyone with some suggestions for treats that would let those boys feel included.”

I braced myself for possible cold shoulders, puzzled looks, or exasperated sighs. But that’s not what I got. I got complete support – “Oh, what are they allergic to?” “What are some specific things they can have?” “Is there something you’d suggest?”

The parents were awesome. They pulled out pens and jotted notes on their schedules. They smiled and said, “Sure.” They weren’t exasperated at all. And they made jokes like, “Shoot, I was going to bring sushi for treats!” and we all laughed, instantly bonding.

We’ve come a long way in just a few years. When my son and his friend first started playing organized sports, people were still unfamiliar with food allergies, and it was harder to ask other parents to include our boys in their snack choices. But over the last five years, awareness has grown so much that we’re surprised each time we ask and we’re greeted with a positive reaction of support.

So despite the 40-degree weather, bone-chilling wind, and snowy rain, I think I’m ready for the season to start after all.

Play ball!

A Well-Written Article

One of the best articles I’ve seen lately about food allergies was in the Salt Lake Tribune last Wednesday. And no, I don’t think it’s a great article just because Michelle Fogg (UFAN founder) and I are both quoted in it. (In fact, that usually makes me nervous – I’m much more comfortable doing the interviewing than being the interviewee!) No, it’s a great article because it’s very comprehensive, easy to understand, and (get this) useful.

The writer, Sean Means, set out to tell parents of children newly diagnosed with food allergies the most helpful information they need to know right away. And I think he did a great job. If you haven’t read it yet, click here.

One of the most valuable things this article accomplishes is reassuring parents that feeling overwhelmed and frustrated is normal and reasonable – and experienced by every other parent of food-allergic children (and food allergic adults themselves). Then the article goes on to explain that before too long, you learn to live with food allergies, and those “why me?” emotions fade, eventually being replaced by competence, confidence, and a positive attitude. How amazing is that?

Just knowing there really is “life after diagnosis” can help you get through those first couple of months. I sincerely thank Sean Means for showing more Utah parents that light at the end of the tunnel last week.

Hidden Ingredients in Lotions

While we were in Mexico, my son and husband began calling me “Picasso.”

I know what you’re thinking. You’re thinking it was my natural artistic talents that earned me this nickname. My penchant for patterns. My love of colors.

You’re right. It was all of those.

Unfortunately, the canvas for my artistic endeavors was my family’s winter-white skin, and my paint was sunblock.

Every day, I would dutifully apply sunblock to myself, my son, and my husband. And every day I would miss a spot or two, which would reveal itself later that evening as another bright red patch in a place it didn’t belong. By the end of the week, we all looked like patchwork dolls pieced together from a dozen different red fabrics.

Artistic, perhaps. Smart, no. Attractive, even less so.

The resort where we stayed was quite nice, and it graciously provided a decent-sized bottle of “Gilchrist & Soames Chamomile Aloe Vera” lotion in each bathroom. As usual, there was no ingredients label on the bottle. There never is, on hotel-sized toiletries. So I don’t use those lotions on my son – I always bring my own small bottles of safe lotions and shampoos, because I never know when a manufacturer is going to use a nut oil in a cosmetic product.

I did use the lotion on my own sunburned legs, and it really felt wonderful – the aloe vera in it did the trick. I was tempted to use it on my son, because he got a bad sunburn on his cheeks, but instead I washed my hands and used my own lotion on him.

Turns out, that was the right decision.

When I got home from our vacation, I logged on to the manufacturer’s website, found a phone number, and called and talked to a very friendly and helpful woman. She didn’t have the ingredients list, but promised to track it down and email it to me.

The next day, the email arrived. Sure enough, the lotion contained sweet almond oil. Choosing NOT to use the lotion was definitely the right way to go. The lotion also contained sunflower oil and soybean oil.

I wrote back to the woman and explained that I was glad I didn’t apply the lotion to my son, because having an allergic reaction in a foreign country would be scary. I also let her know that soybean oil and almond oil represent two of the top eight food allergens that cause 90% of the reactions, and I politely asked if I could make a suggestion to include at least a small warning on their bottles about nut and soy allergies. I explained that since these lotions are found in hotels around the world, the people most likely to use them are always far from home and familiar medical help. It could be a problem.

The lovely woman promptly wrote right back and said she’d forwarded my email to her supervisor, explaining to him how serious nut allergies are for so many people, and she thanked me for taking the time to let her know.

She could have blown me off. That’s the typical response from customer service people these days. But she didn’t – she took the time to let me know she thought my idea and concern were valid.

I doubt we’ll suddenly start seeing ingredients labels on hotel bath amenities any time soon because of one little email on my part. But if we all start sending simple email requests to manufacturers whenever we encounter something like this, it might make a difference someday. I hate to think that somewhere in Mexico right now, a mom is putting lotion on her allergic child to soothe a stinging sunburn, and that simple remedy is going to make a good vacation day turn bad, when a simple label could have prevented that.

So use caution when you’re staying at a hotel, and avoid using those unlabeled toiletries. And apply sunblock twice as often as you think you need to. Unless you want to take over my role as “Picasso.”

Avoiding “Cacahuates” in Mexico

“Remember,” my dad explained to my son last week while we were all together on vacation in Mexico, “don’t eat anything that starts with ‘caca’.”

Good words to live by.

“Cacahuates” is the Spanish word for peanuts. “Nueces” means nuts. We practiced them a lot on our vacation, making sure we didn’t accidentally order or buy anything that contained them. We were having too much fun playing in the waves, lounging on the beach, and splashing in the pool – we sure didn’t want to cut any of that short by having to practice the Spanish word for hospital (which is, fortunately, “hospital”).

We did have one close call, however. At our resort, we ate dinner one night at the buffet. When we walked in, I told the hostess that my son was allergic to peanuts and nuts, using both the English and Spanish translations. She completely understood, and turned to tell another waiter beside her the same thing. I could pick out enough of her words to know what she was saying. They both nodded emphatically and explained to me, in English, that they understood, and that he would find many foods to choose from.

So far, so good.

When our real waiter arrived, I again explained to him that my son was allergic to “cacahuates y nueces,” tackling it in both Spanish and English, and he assured me, in very nice English, that he understood and he would talk to the chef.

Again, so far, so good.

At this buffet, you order a main entrée, then go to the buffet for salads, fruit, various Mexican specialties like fajitas and empanadas, and desserts. My son ordered the steak entrée, then we strolled the buffet looking for safe things for him to eat. The breads were out – no way to verify the baking ingredients. But the chicken fajitas were okay, the cheese empanada was tasty, and the watermelon was right up his alley. We avoided the dessert table completely – pecans and almonds were evident.

When his entrée arrived, there was the steak, a mini quesadilla, and a tiny rolled thing under sauce. “What is that?” I asked the waiter who delivered the food, who was not the same waiter we’d ordered from.

“Enchilada,” he said.

“What is the sauce on it?” I asked, eyeing it. It looked suspiciously like a mole sauce, which is often made with peanuts, almonds, or other nuts.

“No, no,” he assured me. “Nothing like that.”

“Are you sure?” I asked, “because he’s ‘alérgico’.”

He assured me again that it was nut-free. A little part of me still worried, but I’d told four different people now, all of whom assured me that they understood.

My son started in on the steak. Fortunately, he doesn’t care for sauces on much of anything, so he started on the side of the plate away from the mysterious sauce.

He was on his third or fourth bite when our original, main waiter suddenly appeared at my son’s side, and began whisking away the plate. “I need to take this away,” he said, breathless from having run across the whole restaurant.

“Stop eating!” I commanded my son, and he dropped his silverware and sat back, while the waiter scooped up the plate.

“I am so sorry,” the waiter was saying. “It was a mistake. It should not have happened. I will bring him a new plate with new food.” Within a minute or two, he was back with a new plate, new steak, and no sign of mole sauce.

The waiter was clearly embarrassed and upset, because he wouldn’t look me in the eye when he came back to refill our glasses with water. Finally, I called him over to me.

“Thank you for catching that. His allergies are scary, so I appreciate that you discovered the mistake and told us right away.” He still was embarrassed and contrite, but I could see the relief in his shoulders.

I’m a big fan of the “encourage good behavior with rewards” school of thought. I could have made a scene, chewed him out, or been angry. But that wouldn’t have helped anything. The close call and his embarrassment alone left a huge impression on him, and I know the next time an allergic person sits at his table, he’ll be extra vigilant about their food. I hope that by telling him how much I appreciated him being honest and fast in fixing the mistake, I left him with a good feeling about allergic people, and not a dread. Fear causes mistakes. I want him to care, not fear.

Also, I had made a mistake, too. I had a bad feeling about that sauce, and I didn’t act on my motherly instincts.

Next time, I’ll know better, too.

Fortunately, the whole story had a happy ending. My son loved the steak, I loved my mahi-mahi steamed in a banana leaf, and when we left the restaurant, the waiter purposefully caught my eye and said “thank you.”

And for the rest of the week, my son successfully avoided eating anything that started with “caca.”

I’ll Keep My Own Bag of Troubles, Thanks

I'm off to the sunny beaches of Mexico tomorrow morning, and I'm still doing all those little last-minute things -- like packing -- that I can never quite seem to get done before midnight. Since I'll be out of touch on Monday, when I usually post, I'm posting a little early, and it's a "back by popular demand" column from 2007 (okay, I'm the one who demanded it). Enjoy!

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My very good friend Shari once told me about an old Jewish proverb – something about how if we could all put our troubles in a bag and set it on a table, and then pick up someone else’s bag, we’d choose our own again.

Funny how often I think about that.

When my son was 4, we’d already known about his peanut/nut allergy for a couple of years. I was having him retested to see if – against the odds – he’d outgrown it. With kindergarten looming (okay, so it was still a year and a half away – I like to get a head-start on my worrying), I was feeling sorry for myself, wondering why my son had to be cursed with a food allergy that would make normal school lunches anything but normal. How would I keep other kids from rubbing their PB&Js in his hair? What would I do if the teacher insisted all the students make ladybugs out of walnut shells? What if my son got tired of salami sandwiches? O, woe is me!!!

A little over the top, I admit.

To get his blood drawn for the allergy test, we went to a nearby hospital. It happens to be a renowned children’s hospital, with the expertise and facilities that draw young patients from across the western U.S.

As we walked down the hall looking for the out-patient lab, we began passing some of those patients and their parents. There were children in wheelchairs, their bodies crumpled and contorted. There were children on gurneys, hooked up to machines that made sure their hearts kept beating or their lungs kept filling with air. There were children with bright smiles and missing limbs, and others with body parts intact, but a glazed-over look to their eyes that belied other damage.

Meanwhile, my 4-year-old whirlwind was running down the hall, shouting excitedly about the primary-colored mechanical water sculpture in the next lobby. As I tried to keep him from clambering into the fountain or hopping across the benches, I felt like I should be apologizing to all the other parents. This was a place for terribly sick children, I thought to myself. My child wasn’t sick – he just had food allergies!

And just like that, my perspective reset itself. All my self-pity was transformed into a sense of shame, and my own bushel-bag of burdens began to look snack-sized.

What had I been whining about? My kid could run, laugh, climb, and get into a thousand varieties of trouble – all before breakfast! So what if I have to be extra careful about the breakfast he comes into contact with? So what if I have to carry an EpiPen? I and my son have the very good fortune to be living in an age when we have EpiPens, knowledgeable doctors, and an amazing variety of safe foods to choose from.

A few minutes later, my son was asking the nurse a dozen questions about drawing blood, and he watched, fascinated, as she drew his. His sharp little mind was so busy figuring out how the needle and tube worked that he forgot to cry. All the way out the door, he chattered about how the next time I needed blood drawn, he could do it for me.

As we stepped out into the sunshine, I tucked my bag of troubles into my pocket. It felt familiar and – while not quite comfortable – a lot lighter.

Now, whenever someone new says, “Oh, dealing with his allergies must be terrible!” I try to imagine what might be lurking inside their bag of troubles. Then I shake my head, smile, and say, “As challenges go, I’ll keep this one, thanks.”

Hope – But Don’t Try This At Home

It’s all over the news – friends are calling me and emailing me, telling me about the latest study reported last week at a meeting of the American Academy of Allergy, Asthma and Immunology. (Read the New York Times report here.) In this study, peanut-allergic children were given a daily dose of peanut powder to desensitize them to peanut allergens.

Basically, by introducing tiny, carefully controlled amounts of the allergen on a daily basis, doctors are slowly building up resistance in the patients’ bodies. Eventually, the theory is that the patients’ bodies are retrained, so that they no longer view the peanut proteins as allergens.

Most of the children in the study are tolerating the therapy without suffering from allergic reactions. This is great news. It means that for most of the kids in the study, their bodies’ immune systems are being slowly retrained, so that they can eventually eat a few peanuts safely.

The doctors involved in the study believe that in two or three years, an actual treatment for peanut allergy may be developed, based on the findings from this study and other related studies going on throughout the world right now.

This is wonderful! At this point, there are two promising treatments – desensitization, and the Chinese herbal treatment FAHF-2.

Though we appear to be on the verge of breakthroughs, we still need to be careful. Doctors involved in this study (and others like them) are worried that people will run out and try these treatments at home, on their own, with disastrous results.

One reason why caution is essential is that the treatment does NOT seem to work for everyone.
Four kids dropped out of the study because they couldn’t tolerate the therapy – even the tiny doses involved in the therapy still caused allergic reactions. Since the therapy starts with a dose equivalent to 1/1000th of a peanut, that’s pretty disheartening for the parents of those four kids.

Another aspect to consider is that these studies are relying on carefully measured doses, in carefully monitored lab situations where help for anaphylactic reactions is immediately available. Most of us don’t have the capability to measure 1/1000th of a peanut accurately, nor the detailed knowledge of the protocols used in the testing to administer these doses safely. A doctor’s guidance is essential.

A third reason for caution is that all of the studies I’ve read about so far are using children with only a single allergy right now. Multiple allergies are difficult to account for in a controlled study, so doctors are only studying how desensitization works on a single allergy – throwing lots of allergies into the mix could greatly change doses, reactions, and chemical interferences.

So while the outlook on the horizon is rosy, don’t throw away your EpiPens yet. Keep your eyes and ears open for news, talk to your board-certified allergist, and follow the study results carefully. But don’t try this at home just yet. But in a few years, perhaps life will be much easier and safer for many of our children. Let’s keep our fingers crossed.

Democratic Process in Action

The Utah Legislative session for 2009 is over, and HB 124, which affected the lives of many Utah families who struggle to pay for the formula that keeps their severely allergic kids thriving, didn’t make it to the Senate floor.

That means it failed.

So those families are still faced with paying hundreds of dollars a month for the only formula that their babies can ingest, because insurance companies view it as “unnecessary.”

Frustrating as it was, following the progress of this bill was interesting. I participated in the democratic process for this bill by emailing my local representatives early on, then emailing all of them last week, asking for their support. When it passed the House and was sent to the Senate this week, I emailed Minority Leader Rep. David Litvack asking him to prioritize the bill so that it would get read in the Senate. It was assigned #20 on the list, so it never got read before time ran out.

Despite the fact that the bill failed, this is what I learned: it’s surprisingly easy to participate in this process of government. I sent three little emails. It took maybe a minute of my life each time. Three minutes total. And it came close to making a difference.

What was even more surprising was that I actually got responses from several of the representatives – all but one of the ones who responded said they supported the bill. The one who didn’t outright support it was honest enough to tell me he wanted to learn more about the bill and about why the finance note was removed before he would vote for it. I appreciated that.

These representatives must get tons of emails. They’re faced with a zillion bills to review, make a decision on, and vote on. Most of those bills are either incomprehensible or imbecilic, and this year everything was complicated by the distracting background noise of Utah’s economy being sucked down the drain. And this bill, I admit, probably wouldn’t be high on anyone’s list if they weren’t affected by the diseases that it covers. Yet several of the representatives actually took a minute of their time to write back to me to tell me their stand on it.

It was an interesting experience, even if it didn’t turn out the way we’d hoped. Last year (and the year before that), our allergic families were successful in getting legislation passed that makes it legal for our kids to carry their epinephrine shots in school, and lets responsible adults like teachers, counselors, and coaches get prescriptions to carry and administer epinephrine to kids in their charge. That legislation made it through the legal process successfully. So we know it can happen, and we know there are people in the legislature who care about our medical issues.

So next year, I hope the people who supported us this time will support us again, and we’ll see if this bill gets passed. And I’ll be ready with my mouse poised over the Send button on my email. A little communication with the real people casting the votes really can make a difference. Who knew?

Bring On the Chocolate Bunnies!

“Here comes Peter Cottontail, hoppin’ down the bunny trail! Hippity hoppity, Easter’s on its way…”

Lucky for you, this blog is text-only, so you don’t have to hear me sing. My son isn’t as lucky, however. Ha! I can’t wait to sing in front of his friends and embarrass him completely.

Okay, so Easter is still five weeks away. But when you have children with food allergies, now’s the time to start planning for those egg hunts and Easter Baskets – or for your Passover Seder feasts – because to find egg-free, milk-free, and nut-free chocolate bunnies, jelly beans, and other goodies, you almost certainly have to order them from an online manufacturer.

So today I’ll offer some ideas and links to places to shop for Easter and Passover goodies, so you can get the jump (ha! I slay myself) on ordering. Trust me, you don’t want to wait until the last minute. Last year, some of the allergy-free chocolate makers ran out of bunnies, so if you waited too long to order them, you were out of luck. This year, many of them have notices saying “Available before March 28 or until supplies are gone.” So this year, we’re all going to be smart little bunnies and do it early, right? Right!

If your kids are only allergic to nuts, you may find Hershey’s chocolate bunnies in the grocery stores – check the label carefully, but I can usually find a nut-free Hershey’s bunny without having to order it. And this year, Hershey’s has a bag of candy-coated chocolate mini eggs that are nut-free. (I got a bag at Smith’s.)

However, if you need to avoid milk or eggs or gluten (or all three), it gets harder. Luckily, there are several really good chocolate manufacturers online who offer allergy-friendly chocolates and candies for every holiday. So check these out:

Vermont Nut Free: Their chocolates are peanut-free and nut-free, but they do have milk and egg warnings on them. But their selection of nut-free chocolates is great – chocolate pops on a stick, bunnies, truffles, gold-foil-wrapped coins, etc. Yummy!

Divvies: Nut-free, dairy-free, and egg-free chocolate bunnies, jelly beans, gummy stars, and chocolate chips! Oh my!

AllerNeeds.com: This online grocer sells allergy-friendly foods from several vendors, but the best part is they sell Enjoy Life! Foods’ Boom Choco Boom chocolate bars in a variety pack of six bars. (Enjoy Life! Foods are free from the top 8 allergens.) They also sell some candy manufactured in Canada’s nut-free and peanut-free factories, so it’s worth checking out.

Amanda’s Own Confections: They offer a whole line of chocolate goodies for Easter and Passover, as well as jelly beans and other candies, all dairy-free, nut-free, egg-free, and gluten-free!

Chocolate Emporium: Read the ingredients carefully on this website, but they do offer a lot of kosher (parve) chocolate items for Passover, all of which are dairy-free, and most of which are gluten-free. Most of the Passover chocolates do, however, contain nut contamination, and some contain egg whites. The only Passover chocolate item that didn’t contain eggs, nuts, gluten, or dairy that I could find was the chocolate-covered raisins. Their Easter chocolate list has a much larger number of items that are milk-free, nut-free, egg-free, and gluten-free, including bunnies, pops (chocolate shapes on a stick), foil-covered mini eggs, jelly beans, a bunny-shaped chocolate box filled with jelly beans, etc. Call before you order to ensure you get what you need. As an added bonus, all Easter items are kosher. Go figure.

Remember, Easter eggs and Easter baskets don’t have to be filled with candy. Oriental Trading Company offers a bazillion (I counted them) little novelty toys that fit inside Easter eggs or into Easter baskets, and you can buy them by the dozen or more. (Anyone need 144 smiley-face bunny erasers for only $4.99?) And for the ultimate in time-saving, you can even buy plastic eggs pre-filled with little toys (2 dozen for $7.99). Now THAT’s a helpful Easter Bunny.

Hoppy shopping!

“Why We’re Going Nuts”

Last week, Time magazine printed a great article about peanut allergies, called “Why We’re Going Nuts Over Nut Allergies), by Alice Park. (Read it here.) It’s one of the more balanced, informative, and all-encompassing articles I’ve read in a while. It goes through each aspect of food allergy one by one – what it is, what might be causing it, who is suffering from it, possible on-the-horizon therapies, the hysteria backlash, how airlines are reacting, and how schools are dealing with it, and so on.

If someone you know doesn’t understand much about food allergies, showing them this article would be a good place to start. And the fact that it’s in Time gives it a little more credence for those who are a tad skeptical.

One of the things I like about the article is its moderate voice and impartial stand. It simply states that yes, it’s a real concern, and there are things we can do about it. But in a year when there’s starting to be huge backlash, it breathes a nice sense of calm into the debate.

As with all situations, hysteria and cries for extreme measures do nothing to help our cause. Instead, they incite the other side to react just as strongly the other direction, just as unreasonably. But taking a calm, practical approach, with an eye towards seeing that both sides are able to live with reasonable precautions makes everyone more willing to work together to find a compromise.

Politicians, lawyers, and religious extremists have been proving this to us for thousands of years – scream, and the world will scream back at you. Smile and offer ideas, and the world might just listen. It takes a lot of smiles and a lot of patience, but usually lasting change happens slowly, with reasonable people having reasonable ideas, not through violent people insisting we think their way.

Some folks might say that you can’t get anyone’s attention until you scream. They’re entitled to their opinion. But that’s never worked for me. Being helpful and reasonable, yet steadfast, has gotten me a lot farther. Look at Trace Adkins last year – he raised a huge amount of awareness last year by choosing the Food Allergy and Anaphylaxis Network as his charity on “The Apprentice.”

And the only time he raised his voice was to sing.

The Joy of Cooking???

Believe it or not, I’ve discovered an up-side to the bad economy: I’m cooking more.

It’s not like I didn’t cook before. But we did go out to dinner at least once a week, and I found myself relying on pre-packaged foods for fast dinners on the nights when we were home.

But lately, I’ve been making myself think about dinner more than five minutes ahead of time. It’s making a difference in how we’ve been eating, and I think it’s a good thing.

I’m not one of those people who love to cook. I love to eat, but cooking… not so much. Frankly, I’d rather scrub grout. So it’s always a surprise to me when dinnertime rolls around and I have to – wait for it – dream up a new meal. Hey, didn’t I just do this last night? Why is everyone hungry again? They’ve got a lot of nerve!

But with the economy falling down around our feet, I’ve realized that it’s cheaper to cook than eat out (duh), so I’ve begun looking through my recipe box. For some reason, I cut out recipes from newspapers and magazines all the time. It’s like I think I’ll actually make them sometime. It’s funny and pathetic at the same time. I’m such an optimist. A delusional optimist. I’d like to think it’s one of my cuter characteristics, but I have my suspicions it’s not. Whatever.

So I’m looking through my recipe box and finding things like meatloaf. Hey, I think, I haven’t made meatloaf in years. I wonder if my son the carnivore would like it. I make it, and holy cow! He ate two slices!

It’s not like meatloaf requires a Cordon Bleu education to make. So why did it take me so long to think about preparing it for my family? Oh yeah. I recall the reason now: I have to remember to thaw the hamburger meat in time, and then cook it in the oven for 45 minutes. That means it never fit into my schedule of starting dinner a maximum of 8 minutes before my family all faints from hunger.

My crockpot has been getting a workout lately, too. Gotta love that thing – throw some meat and veggies and a little broth into it in the morning, come home at night and voila! Everything’s done. Whoever invented the crockpot gets my vote for genius of the century (um, the last century, that it).

It hasn’t been easy retraining myself. I don’t plan ahead well. But since I’ve been trying for several weeks, I’ve discovered that it’s getting a little easier. I guess I’m building a new routine, and the results are working pretty well.

The best part about my new cooking routine is that we’re finally eating healthier. Less fat, more fruits and veggies, and fewer chemically-named ingredients. And, of course, less chance of food allergy cross-contamination. I know exactly how each dish was prepared! I know nobody picked the walnuts off the top of the salad before serving it to me because they forgot I said “no nuts, please.” I know the rice doesn’t have almond slivers in it. I know the breading on the chicken is safe.

And the kitchen smells good, too.

If I’m not careful, I might actually start enjoying this cooking thing. (Do flying pigs have enough meat on their wings to make buffalo wings? Hmm…)

Good News from the Medical World

With all the stress, confusion, and uncertainty that comes with food allergies, wouldn’t it be great to get a little bit of good news for a change? How’s this:

Trials in mice of a Chinese herbal treatment called FAHF-2 protected peanut-allergic mice from anaphylaxis for more than eight months after the treatment stopped.

Really. Perhaps a type of vaccine is finally on the distant horizon!

Di. Xiu-Min Li, an associate professor of pediatrics and the director of the Center for Chinese Herbal Therapy for Allergy and Asthma at Mount Sinai School of Medicine, and her colleagues published their findings in the Journal of Allergy and Clinical Immunology this month. Their findings reinforce previous studies showing promise for this particular drug, which has already received investigational new drug approval from the FDA. Read an article about this latest study on the Medical News Today website here.

Of course, this is great news for mice everywhere. But what’s even better is they’re conducting human trials right now at Mount Sinai to study the safety and effectiveness of FAHF-2 on even more food allergies, like tree nuts, fish, and shellfish, in addition to peanuts.

Ordinarily, it takes years and years for a new drug to go through all the testing, research, modifications, and approval process before the FDA will finally allow that new drug to become commercially available. So for most of us, even if this drug really works the way we hope it will in humans, it will be years before we will be able to take advantage of it. But even so, this news gives all of us hope for the future of food allergy treatment and prevention.

I can’t imagine how wonderful it will feel to have a medicine like this available for allergic people. Even if it meant the allergic person had a shot every month, it would be worth the peace of mind knowing that an innocent looking cookie would never again betray someone you love.

I am so grateful that there are brilliant minds out there working on this for us. As I sit here on this overcast, cold February day, it gives me a warm feeling of hope, like spring truly is on the way.

To Kiss or Not to Kiss...

Valentine’s Day is almost here. Yes, it’s that time of year again… the time for love, romance, special dates – and kissing.

Crap.

Just what we food-allergy sufferers need. Something else to worry about.

For young people, kissing is complicated enough. Think what kisses can lead to – brain malfunctions, ruined reputations, marriage proposals, bad dates, broken friendships, unreasonable expectations, dizziness, pregnancy, forgetfulness, poor fashion choices, high credit card bills, lousy steak dinners… and that’s all in a good weekend.

Now, throw in the fact that food allergens can stay in a person’s mouth for hours after they eat, and suddenly you’ve added “scary trips to the ER” to the list.

My son is only ten. He’s still in the “Oh gross, they’re kissing!” stage. Every time he sees someone kissing on TV, he slaps his forehead as if to say, “What are they THINKING?” I’m encouraging this attitude. As far as I’m concerned, he can think kissing is gross until he’s 35. Or 40. Really.

But sadly, I figure I’ve only got another few years (okay, I admit it, I’m optimistic) before the hormones suddenly turn from “eww” to “oooh.” And then I’ll be staying up late, worrying about all the usual things parents of teens worry about, plus that other one: “Did the girl he’s kissing eat peanuts today?”

Food allergies bring a whole new aspect – a really ugly one – to the already dangerous minefield of kissing.

In 2003, the Journal of Investigational Allergology and Clinical Immunology published a paper from Swedish doctors who studied how many allergic people had a reaction after kissing someone who’d eaten the offending food. Their study showed 12% of survey participants had an allergic reaction after kissing. (When they eliminated respondents who “didn’t know” if a reaction was caused by a kiss, the numbers rose to 16%.) That’s not comforting.

As an interesting side note, the doctors surveyed both Russian and Swedish participants. Of those, 12% of the Swedish survey participants reported a reaction, and only 5% of the Russian participants did. I can think of all sorts of jokes here about who you would rather kiss – a member of the Swedish Bikini Team or the Russian Swimming Team, but that would be rude and stereotypical. So I’ll let you come up with your own jokes.

The Mayo Clinic Proceedings website outlines a 2003 case report (apparently 2003 was an extraordinarily bad year for kissing) of a seafood-allergic woman kissing her boyfriend after he’d just eaten shrimp, and then suffering from an anaphylactic reaction and having to go to the hospital.

This case report was only one of many that have been showing up with alarming frequency in the literature, so some doctors in New York decided to study how long peanut residue could stay active in the saliva of people who’ve eaten peanut butter, and whether or not brushing teeth or other “interventions” would help get rid of the allergens. They published their results in 2006. They studied 38 people. Immediately after eating 2 tablespoons of peanut butter, the subjects’ amount of allergens in their mouth varied “considerably,” but many had levels of peanut proteins high enough to cause reactions. They tested again one hour after eating; at that point, 87% had undetectable levels. Unfortunately, that means 13% still had detectable levels of peanut in their mouth.

When they used interventions to cleanse the mouth immediately after eating peanut butter, such as rinsing or brushing their teeth, the allergens were reduced, but still remained in approximately 40% of the samples. Their conclusion: “Patients with peanut allergy require counseling regarding the risks of kissing or sharing utensils, even if their partners have brushed their teeth or chewed gum. Advice to reduce risks, although not as ideal as total avoidance, includes waiting a few hours plus eating a peanut-free meal.”

Another comment in the study added: “Teenagers with peanut and other food allergies need to be reminded that to stay safe, restraint and patience are necessary even in the most intimate situations.”

Yeah, good luck with that. Parents have been trying to remind teenagers to use restraint and patience to stay safe since they were running around poking spears into angry wooly mammoths.

So what’s a teen to do? Well, here’s what the experts recommend:

1. Tell your date what you’re allergic to, and explain how serious it is.
2. Ask your date to refrain from eating those foods on the day of your date.
3. Ask your date to brush their teeth and wash hands if they have eaten something you’re allergic to, and wait AT LEAST one hour before kissing.
4. Keep your EpiPens with you at all times.
5. Wear a medical ID bracelet, so if you end up unconscious, the EMTs will know what to do with you. A bracelet also is a good way to "break the news" to people -- when they ask what the bracelet is for, it's easy to explain food allergies without sounding like you're fishing for a kiss.

As for us parents, here’s what we can do:

1. Worry.
2. Pray.
3. Trust that we’ve taught them well.
4. Love them.
5. Breathe a sigh of relief when they come home safe with that silly look on their face. Despite the silly look.
6. Keep on the lookout for other teens who also have food allergies, and try fruitlessly to arrange accidental meetings between your child and those other teens.

Personally, I’m going to be creating a “dating application” for my son. All of his prospective dates will have to complete the application, submit to a lie detector test, and provide a $100 deposit for ambulance transportation fees before the date commences.

I can hear my son slapping his forehead now.

Happy Valentine’s Day.

Peanut Butter Recall

Q: When is being allergic to food a good thing?

A: When that food is involved in a nationwide recall because it’s contaminated with salmonella.

Two years ago, in February of 2007, peanut butter made in the ConAgra Foods Inc. plant in Georgia was found to be contaminated with salmonella, and hundreds of people fell ill from it. Now, here it is February again, two years later, and another bout of peanut butter salmonella has cropped up, this time from peanut butter and peanut paste processed by Peanut Corp. of America in Georgia. Again, hundreds of people are falling ill – as of January 28, according to the Centers for Disease Control and Prevention’s web site, 529 people from 43 states and one person in Canada have been reported infected, and “the infection might have contributed to eight deaths.”

Originally, the FDA thought the salmonella was only in peanut butter sold to institutions such as hospitals or nursing homes. But now they’ve realized it could be in any number of products that use peanut paste, from cooking sauces to baked goods, and even pet foods. The list of recalled products is up to 180 products now. (Click here for the CDC’s recall list.)

Silver linings are great, aren’t they? There isn’t often a silver lining to having a food allergy. But right now, there are probably about a million American families that are breathing a collective sigh of relief because this is one food problem they DON’T have to worry about. What a nice change of pace!

We’re always told to count our blessings. But sometimes we forget that blessings come in many disguises, and from the least likely of sources. But right now, I’m counting my son’s peanut allergy as a blessing. I didn’t have to worry about the food I put in his school lunch this morning. I don’t have to worry that my family will become deathly ill from a contaminated box of rocky road ice cream tonight. And I don’t have to spend this afternoon scouring my pantry shelves for the 180 products that have been recalled. I got rid of everything peanut-related 9 years ago. That means I can spend today doing something else, like taxes.

Um…Wait, did I say that was a blessing?

Help Pass H.B. 124

The Utah Legislature is in session. Now before you go and hide, there’s a good thing happening right now in the legislature. Representative Christine A. Johnson has sponsored a bill (H.B. 124) asking for “Insurance Coverage for Eosinophilic Gastrointestinal Disorders and Short Bowel Syndrome.” (Click here to read the text of the bill.)

What are Eosinophilic Gastrointestinal Disorders? Basically, it’s a disorder that “is characterized by having above normal amounts of eosinophils in one or more specific places anywhere in the digestive system.” In terms the rest of us can understand, these people (and we’re often talking about babies and kids here) have intestines that can’t tolerate or absorb regular foods or even baby formulas composed of whole proteins, fats, or carbohydrates.

People with these disorders are allergic to just about everything. Babies with it can’t eat anything but a specific type of formula made from non-allergenic amino acids that are already broken down so that the baby can more easily digest it. Unfortunately, this formula costs hundreds of dollars a month for a single child, and most insurance companies don’t cover it. Hundreds of dollars a month. Hundreds. Did I mention hundreds?

Rep. Johnson’s bill will direct insurance companies to recognize these diseases as the deadly diseases they are, and will get the insurance company to cover this formula as the medically necessary product it is if the child’s doctor prescribes it.

Without this formula, these babies simply do not thrive. They drop well below range on weight and height charts. They grow very ill. They can’t eat anything, not even mother’s breast milk. Yet most insurance companies ignore it.

So we’re very thankful to Rep. Johnson for sponsoring and filing this bill with the Legislature. If you’ve got a minute or two, call or write to your own state representative and let him or her know how serious this disease is, and how essential covering this formula is for the families affected by it.

If insurance companies will cover Viagra to make babies, the least they can do is cover the medically essential formula that is all that will keep some of those babies alive and thriving.

You go, Rep. Johnson!

Countering Hysteria

On January 9, 2009, Joel Stein wrote an opinion column in the LA Times about his belief that peanut allergies in children are nonexistent, a result of mass hysteria by affluent parents who want to feel special. (Read his column here.) On January 15, the LA Times printed a “blowback” response from Robert A. Wood, professor of pediatrics and director of pediatric allergy and immunology at the Johns Hopkins University School of Medicine and member of the Food Allergy and Anaphylaxis Network's medical advisory board, who explained that the disease is an actual disease that affects children regardless of their parents’ financial status or emotional desires. (Read Dr. Wood’s response here.) I’m very glad the Times printed that response. But I also think Joel Stein should hear from some of us “hysterical” moms, too. Here is my own response to Joel Stein.

Dear Joel,

I’m glad no one you love has a severe food allergy (LA Times, “Nut Allergies – A Yuppie Invention,” 01/09/09). I wouldn’t wish that on anyone. The 1 in 20 kids who’ve developed food allergies aren't suffering from hysteria. They're suffering from a condition where a food protein attaches to IgE antibodies on mast cells, causing the mast cells to explode, releasing histamines into the body. This causes a reaction ranging from a mild rash to the shutting down of several body systems, including respiratory and digestive systems. In other words, eating a peanut might give you a rash. Or it might make you stop breathing. It’s unpredictable, even within the same person from one time to the next.

I wish you had been with me last Sunday night at the doctor's office, watching a ten-year-old boy I love swell up and turn red and cold from head to toe. By getting him the medicine he needed immediately, we turned the reaction around and he was fine in a few hours. I suppose we could have told him he was being hysterical and to just get over it. But I'm glad we chose to administer quick medical help instead. I’m not sure your approach would have saved his life.

I'm sorry you think we're inventing numbers. We wish we were. No one knows why our bodies are now identifying normal foods as allergens or why it’s occurring more frequently now -- it probably has little to do with fast genetic mutation, and everything to do with how the chemical environment we live in (which is significantly different than it was thirty years ago) has simply altered our immune systems. That probably also explains the variation between countries, and possibly the increase over the same time period in diseases like autism and hormonal problems in young men.

We didn't choose this disease. Most of us try to minimize our children's risk while minimizing impact on everyone else. But we truly appreciate it when others are willing to accept a few inconveniences to ensure they don't accidentally kill the kid sitting next to them. A few hysterical people, as usual, cloud the issue for everyone else – and those hysterical people can be found on both sides of the issue. Some choose hysteria to get attention from doctors, so their influence is limited to a handful of immediate family and friends. Some choose hysteria to sell columns, so their influence amounts to thousands of readers. Neither is beneficial to those millions of us in the middle who have to find ways to live with the truth of a disease that is scary, but manageable as long as the hysteria is controlled.

Thank you for giving topics like this a little more thought in the future. Lives depend on taking diseases seriously and discussing them rationally.

Sincerely,
Kelley
Mom of a peanut-allergic kid

Accidents Happen

Last night, my son’s best friend accidentally ate some hidden cheese, and he ended up at the doctor’s office at 10:00 pm with a strong food allergic reaction. It was scary, but all things considered, he was fortunate – it was not as bad as it might have been. His face and neck puffed up and he turned crimson from his head to his toes (looking for all the world like he’d gotten a bad sunburn), but his breathing stayed normal, his lungs stayed clear, and his oxygen level remained great.

He didn’t need to be injected with an EpiPen, but the doctor did prescribe an oral steroid for the next few days, and his mom is keeping him on Benadryl for 24 hours.

He woke up this morning back to his normal color, and with only a faint shadow of puffiness beneath his eyes. We’re all breathing easier this morning.

Now, in the clear light of day, after a good night’s sleep, his parents are going through this episode with an eye towards learning from it.

One of the main lessons is simply this: accidents happen. No matter how vigilant, informed, careful, or prepared you are, it’s still possible to let a mistake slip though. Whether it’s grabbing the wrong food because the package labels are similar, or administering the wrong bottle of medicine because it’s in the same location and you’re panicking, or forgetting to check on the ingredients before your kid reaches for a treat, accidents happen.

It’s easy in a situation like this to let guilt and blame flare up. You’re scared, you’re upset, you’re angry. You lash out. In reality, however, guilt and blame always just make things worse, right when the kid needs to hear supportive, positive, loving words instead. So you have to give yourself permission to be human, and give yourself enough room to get past the guilt and move directly to productive actions that will solve the problem at hand.

Fortunately, this family didn’t go down the blame/guilt route. They recognized that there were enough crazy coincidences all happening at once that no one was to blame – it was truly a series of accidents that no one could have predicted. So they’re able to support each other at a time when that’s what they all need. No one is angry; no one is harboring ill feelings towards each other. Everyone is able to feel relief and love instead, which is the way it should be.

This is the first serious reaction this child has had in nearly ten years. That’s because his parents are the most careful people around. They do everything right. They do everything with an eye towards safety. So they’re both agonizing over this experience. But really, it’s remarkable that they’ve only had one mishap of this size in ten years – that says a lot in their favor, since avoiding milk, egg, and nuts in today’s food-oriented society is a constant battle.

The good news is, they were able to deal with the situation quickly, identify exactly what went wrong, and get him to the doctor for treatment. They couldn’t have done that if they weren’t prepared, so they should feel really good about their abilities to rally in a crisis.

And the boy has now had a bad reaction that he can actually remember (most of his other reactions were when he was very small, so it might be harder for him to remember), so when the next time comes, he’ll know a little more about what to look for.

So rather than beating themselves up about this, the family is looking at the lessons they’ve been able to learn, and they’re going to be even more vigilant, careful, and prepared next time. Of course, we all hope there will never BE a “next time.” But accidents happen. It’s how you handle them that matters, and being prepared is the biggest part of success.

New Year’s Resolutions 2009

Well, the New Year is underway, and so far, things are going pretty well. Except for the part about losing weight (I gained 5 pounds over Christmas), exercising more (I carried the laundry from room to room – does that count?), working on my novel (haven’t touched it since November), eating healthy (that pizza last night was sure tasty), keeping my house cleaner (the Christmas trees are still up, decorations cover every flat surface, and now there are boxes piled in the living room waiting for me to find the time to put it all away for next year), becoming rich (the lottery tickets I bought in Texas didn’t win), and getting organized (I know that bill is somewhere under this pile of papers – or maybe that pile of papers, or…).

Sigh. A nice, shiny New Year, and I’ve already put a hundred nicks and dents in it. Here we are, Day 5 of 2009, and things look pretty much like they did on Day 365 of 2008. (And, come to think of it, Day 365 of 2007.)

Maybe that’s not all bad. There’s comfort in consistency, after all.

So what if my goals for 2009 look identical to my goals from 2008? They were good goals, and they’re hardly used, so they still look brand-new. I’m all about recycling.

Better yet, as I sit here at my cluttered desk, surrounded by dusty Christmas decorations, maybe I’ll just skip all the big life-changing goals and concentrate on things I like doing. I’m going to continue creating new recipes for my food-allergic son and his friends. I’m going to read more books. I’ll continue to take on freelance writing assignments. I’m going to make time for lunch or coffee with friends more often. I’ll keep writing my novel. I’ll plan the occasional night out with my husband. And I’ll continue to lead the Davis County chapter of the Utah Food Allergy Network.

There. That sounds like a reasonable set of goals. Now I can ignore the Christmas decorations for another day, right?