Saturday, March 28, 2009

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!

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.”

Monday, March 23, 2009

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.

Monday, March 16, 2009

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?

Monday, March 9, 2009

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! 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!

Monday, March 2, 2009

“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.