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.