Wednesday, August 22, 2012

Are Food Allergy Bans Even Protective?

I just love this picture.
What was this guy thinking about?
There's been wailing and gnashing of teeth this week because the National Association of School Nurses came out with a new position paper regarding food allergies. (It actually came out in June, but it seems to have just hit most of the chat boards this month.) Many food allergy advocates were disappointed because of the statement about food bans:

Maintaining a healthy environment is essential.  All environments in the school setting require special attention to protect students by limiting allergens or providing areas that are allergen safe (National School Boards Association [NBSA], 2011).   Completely banning nuts or other foods is not recommended as it is 1) not possible to control what other people bring onto the school grounds, and 2) does not provide the allergic student with an environment where he/she can safely learn to navigate a world containing nuts.  When a ban is instituted, parents feel their child will not be exposed to allergens.  A ban can create a false sense of security (“Banning allergies from school”, 2012).

There's one phrase in there that's designed to ruffle the feathers of moms of older kids: "false sense of security." That particular wording goes back to the early days of FAAN when Anne Munoz-Furlong was still running the show. There was such strong feeling about this issue that many people stopped contributing to FAAN as a result of that one statement.

Personally, I have always felt a special kindred for AMF because she also has a child with a severe milk allergy, and milk allergy definitely gives you a different perspective on the world. I don't disagree with the "false sense of security" statement.

But that's not what this blog entry is about! We could argue endlessly about peanut bans, and I have addressed them in another blog post. What I'm more interested in talking about today is whether they even do anything to protect most kids.

If you get into debating the need for peanut bans on any of the chat boards, you'll quickly learn that many people believe that  reducing the amount of peanut surrounding their child is, in and of itself, protective. You see a lot of statements like "yes, a ban is not perfect, but it reduces the amount of peanut in the school, even if some people cheat." 

If you stick around longer, you'll probably also notice that people often speak about the peanut in a phobic way. It supposedly "floats in the air" and "sticks to every surface." It's like a tiger, just waiting to jump out and attack our children. The less peanut, the safer the child. 

But does that even make sense? 

Let's go back to last month's post about thresholds. In that post, I cited research that showed that, in the research group studied, 1% of food allergic individuals reacted to 2 mg or less of peanut. Another 16-18% had a threshold that's between 2 and 65 mg. (65 mg is equivalent to 1/5 of a peanut.) 

There's another important concept to threshold: gradual vs. cliff trigger response. What does this mean? 

With a gradual trigger reaction, symptoms would build as the amount of allergen in the system builds. If a child received a micro dose of an allergen, they would have a micro response, and responses would build and remain proportional to the dose.

With a cliff trigger response, a child would go from fine (no symptoms) to reaction. 

My understanding is that the vast majority of reactions out there are the cliff trigger variety. The threshold may change based on different environmental factors (hormones, illness, exercise, etc.), but it takes a certain amount of protein to tip a child into a reaction. Up until that point, there are usually no symptoms. 

The clinical trial we're currently in depends on this being the case. We will return to the hospital in October and my son will go back through the same set of challenges he experienced in April. The success or failure of the medication (assuming he does not have placebo) is predicated on him failing at a particular dose level. Below half a peanut - nothing. Above half a peanut - start of a reaction. (More peanut would certainly escalate things, but it takes a cumulative dose of at least a half peanut to get the ball rolling for him.)  

So, if we put those two concepts together: most children require at least 1/5 of a peanut to get a reaction started, and amounts below 1/5 of a peanut generally causes no trouble.

Is all that a guarantee? Of course not. But I think you can see how thinking about reactions as a cliff response rather than a gradual trigger response can be reassuring for most families. If your child is in the category of hyper reactors, you already know it. They have had reactions (not just hives - reactions) from being at the grocery store, the park, the movie theater. If your child is in this category, they very well may require a ban to be safer at school. 

"But what about contact reactions?" you ask. Yes, kids can get localized hives from contact reactions, but anaphylactic reactions to contact or inhaled peanut are very rare. (Here's a summary from Michael C. Young writing for FARE in Canada about inhalation/contact reactions.)  That's not to say that constant contact reactions aren't a pain in the rear! Again, kids who experience constant contact reactions would probably benefit from a ban. 

For the rest of our children...not so much. Having peanut around them doesn't affect them. Very few children are able to accidentally ingest a fifth of a peanut, unless they're licking their desk surfaces. (Preschools - totally different approach. I strongly believe they should be food-free. Kids at that age clearly do lick their desks, toys and likely each other.)

The sad part of all of this is that, probably at least in part due to the phobia and overreaction of parents who did not need this level of protection, we now have a strong policy statement from the NASN. It's going to make it a LOT harder for the kids who really could benefit from a ban to get one. 

At the end of every ban debate, there's always someone who just comes right out and says it: "why shouldn't I ask for a ban if it could make my child even the tiniest bit safer?" The answer is because invasive actions like food bans have backlash. People do cheat, kids do bully, parents are crappy, organizations do come out with policy statements. Asking for more than we really need always results in backlash. If a ban doesn't even make your child safer, why in the world would you sign up for all that? 

Monday, August 13, 2012

Why We Don't Use Epinephrine Enough

Sanofi came out with a really cool product today: a credit card-sized epinephrine injector. I've been following the press about the eCue, but this one snuck out of nowhere for me.

It's great. It has step-by-step audio instructions, plus graphics. It seems to be pretty easy to use (just take off the safety cap and inject). It's smaller, so kids    especially boys    are more likely to carry it, right?

And yet, I doubt it will make a difference.

There are two issues the device fails to address: recognizing anaphylaxis and acting once we see it.

I always hate talking about this topic because it really underlines that I am a slacker mom. We've experienced a lot of reactions in our house. Part of that is because my husband and I were probably a little too lax when my son was young. The rest was because he has a lot of allergies, and very common allergies. It's very, very hard to keep a severely-milk-allergic child safe 100% of the time unless you just never eat out or never use processed foods.

For better or worse, I do have some experience at recognizing food allergy reactions. Other than the few times where my son had a large amount of an allergen, we have never been sure we were dealing with a food allergy reaction.

Here's my theory on why.

1. Reactions change. Each reaction can be different, and reactions over time can be different. My son used to get really spectacular body hives when he was young. Then, suddenly, he didn't. Instead, he got a tell-tale rash around his mouth. Until he didn't. You can see where this is going...with reactions happening infrequently, it's very hard to see the change in symptoms. We often waited around for the hives to show...or the rash to show...or the flushing of his ears to show. But, as he aged, they didn't show and we were left wondering every time what we were dealing with.

Vomiting with fever  probably a virus. But what about vomiting with a hive-like rash and no fever or other symptoms (even feeling sick)? The time this happened to us, it still turned out to be a virus. It would have been awful if I had given him epinephrine on top of his illness, but it was sudden onset and I was very unsure for the first hour.

The point is, I can count on a couple fingers the allergic reactions he's had that followed the "traditional" pattern of itchy mouth/throat and hives, followed by vomiting and swelling, followed by asthma. Now put yourself in the place of the school nurse, or the harried elementary teacher. They don't know the child's history. How can they make sense of any of this?

That's why a reaction plan is so important. We filled the form out ourselves, but we also independently asked our physician to fill it out. We then compared the two and discussed where they differed. We learned a lot from him about what we should be doing, and he learned a lot from us about our son's unique symptoms.

For example, our jr. high action plan called for giving epinephrine in the event of any after-lunch wheezing without fever. This would definitely not be appropriate for every child. However, my son's history made this an appropriate plan for us.

2. The hunt for the allergen. It can be so hard to believe a reaction is happening when your kid hasn't eaten anything new. And yet, several of my son's mild reactions have been situations where we were never able to trace the food for certain.

I have actually found myself on the phone, calling a manufacturer in the middle of a reaction. Did I really think I was going to get an answer in the time I had to make a medication decision? And yet, it just seems so impossible it was happening when there had been no new foods.

We already know a large percentage of foods labeled "may contain peanut" actually DO contain peanut. The 2010 study by Sicherer, et. al., showed more than 5% of "may contain" foods did contain peanut. It shouldn't be surprising, but it is surprising.

3. The frog in the pot. There's a classic story that's told a lot in business environments about how to boil a frog. Supposedly, if one places a frog in a pot of water and turns the water up gradually enough, the frog will never notice it's being made into soup.

Reactions are a lot like frog soup. They can build and build and, because you get used to each level, you may not recognize the overall seriousness of things.

This is also where that expected symptoms list can trip you up. Vomiting can be innocent. Even vomiting and wheezing could just be a virus, especially when there's no known exposure or even likely candidate as an allergen. It's easy to see how other caregivers, and even parents, can misread the symptoms and wait to give epinephrine. They're just waiting for that one. next. thing.

4. The BIG deal. We all know that giving epinephrine is an instant hospital trip and probably a call to the EMTs. It's incredibly stressful for the child. It's at least four hours (usually six) of observation afterward. It's going to cost money.

Of course we shouldn't think about all those things, and we probably don't think about most of them consciously. But we do think about them subconsciously, and our subconscious is often the one calling the shot. Literally.

Before we can stab our child with that device, the voice in our head says, over and over "is this really that big of a deal?"  In addition, there's another voice saying "are you sure?" (Which you never are.) And another voice saying "what if I hurt her with the needle? or the medication?"  And a voice saying "I'll never live this down/trust myself again if I'm wrong."

It is a big deal, there's no denying that. And yet, we have to prime ourselves to push past the voices and make a clear decision, all in the space of about 15 minutes (if we're lucky). Add to this that most people freeze when they're stressed and it's easy to see why this is so hard.

I really love the idea of the new autoinjector. I've already sent the link to my son, along with the inevitable joke about "is that an Epi-Pen in your pocket, or are you just glad to see me?" This will definitely be better.

But I'm also aware that, experience wise, he's starting from scratch. For seventeen years, it has been my experience, my hunt, my frog, my big deal. Now it's his. And, as with so many things in life, there's no way to just transfer my experience into his head.

Instead, he'll have to stand in that restaurant, or cafeteria, or kitchen of the future, holding his awesome tiny new epinephrine injector, and its size won't matter a whit when it comes to making the hard call.

When is it real? When is it bad enough? When is it too late? 

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Friday, August 10, 2012

The Milk-Allergic, Soy-Allergic School Lunch

Well, it's that time of year, folks. The time when our kids start coming home with full lunch boxes, and when asked why they didn't eat their lunch, are heard to mumble one of the following:

"I just wasn't hungry." 
"My lunch is stupid." 
"I hate sandwiches."

Yeah, yeah, just EAT it, you little -

Deep breath.

Since it's only August, I thought I would post another labor of love for all you moms out there who are dreading the next nine months: the comprehensive "What You Can Feed Your Milk-Allergic Child For Lunch" list. Ready?


Most commercial deli meat (Sarah Lee, Applegate Farms, Boar's Head) is milk free. If they won't eat it on bread, roll it up by itself and wrap in foil.

Try different deli meats! My son loves prosciutto (Trader Joe's has the cheapest), salami (watch the "lactic acid starter culture", though), AmyLu sausages and even bacon (I think Target has the nitrate-free kind).

Swanson chicken in the can. Mix with mayonnaise and send with crackers. If your kid is adventurous, add a teaspoon of curry powder and golden raisins, grapes and/or chopped coconut.

Beans. You can buy these right in the can and serve them whole, or make a cute little bean salad. If you go to a restaurant supply store, you can get plastic dressing take-out cups - they work very well for packing beans in lunches. Let some other parent who doesn't have to DEAL WITH FRICKING FOOD ALLERGIES save the environmental world.

Fish. Really! Salmon comes smoked in the deli case at most stores. (Again, we get ours from Trader Joe's because this stuff is pricey and they have the best and cheapest option.)

You can also make your child fish sticks in the morning, wrap them in foil and put them in a Thermos to stay warm until lunch. (I'm pretty sure we've used Van de Kamp's, but be careful because most contain caseinates.) Add Tater Tots in a toaster oven and it only takes 15 minutes.

Sushi? We never went there, but sushi is becoming more readily available at higher-end delis these days...

Rotisserie chicken. This is a comfort zone issue, but we have recently had very good luck with our local deli's chickens. Because they're done in a special oven and in big batches, the risk of cross-contamination is low (assuming your deli uses no butter on them). This is the world's most malleable ingredient for lunches! Add canned salsa to shredded chicken and you have tacos. Add tomato sauce and it can go over noodles. Mix with salad dressing and it's excellent in a pita.

Tyson chicken. Some of the ready-to-eat chicken strips are milk-free -- warm them in the toaster oven in the morning, wrap in foil and they're perfect for lunch.

Milk-free tuna. It used to be hard to find, but I think even some of the national brands have dropped casein in tuna now.

Soup. Yes, it is possible to find ready-to-eat soups! Trader Joe's has two types in the box that we use. Wofgang Puck free-range chicken soup is also milk/soy free. Remember, too, that most kids are perfectly happy with safe chicken broth (Pacific, Kitchen Basics) and whatever leftover protein and starch you have lying around (rice, noodles)

Trader Joe's chicken taquitos. We love you, TJs!

Weird Stuff To Try

Weird stuff works through about 7th grade, after which point the kid typically notices that it's weird and refuses to eat it. Get the most out of these elementary years, mom!

Polenta. Polenta is ground up corn meal. It comes in a tube -- at our grocery, it's actually in the vegetable section with the herbs that come in tubes and jars. It can be fried in oil and then wrapped in foil to stay warm. (It's also an excellent source of extra fat for too-skinny kids, which is how we first discovered it.)

Dolmades. These are grape leaves stuffed with rice. We use the Roland brand that comes in a can, but I think most of these are basically just leaves...and rice. Again, they come packed in oil, so it's a nice additive for kids who are too skinny. 

Olive Tapanade. This comes in the olives section of the store, usually on the top shelf. There are all different kinds: some are just olives, but others have other vegetables as well. It's excellent on little crispy crackers or thin-sliced bread. 

Canned baby corn. These are kid-friendly and bite-sized...what's not to like?

Rice cakes. You don't have to go with the "paste" flavor -- many now come flavored with cinnamon, apple or other options.

Salads. It's never too early to start a kid on salads! Plus, salads don't have to be lettuce: start with glass noodles or rice, plus salad dressing, and add in anything else your kid will eat. La Choy chinese noodles or homemade croutons (make when your bread gets stale and store in the freezer) are an excellent addition if they are not fans of lettuce. 

Amy's roasted vegetable pizza. It's good! Plus, one pizza makes a couple lunches. 

Stovetop Stuffing. Why not? Better than going hungry.

Milk-Free Bread

It seems to continually come up, so here's the list I know about or have heard about. CHECK EVERYTHING YOURSELF: many of these are from chat board threads.

  • Arnold/Brownberry (some have said these all have milk now)
  • Z-Best (probably Chicago only)
  • Gonnella
  • Bimbo
  • Kid's Choice
  • Target sour dough
  • Breadsmith (however, they do use tree nuts in some stores)
  • Rosen's/Mary Ann rolls (they use sesame)
  • Sara Lee
  • Thomas's muffins
  • Lender's bagels
  • Rhode's frozen bread dough
  • Pillsbury rolls (watch for butter in some)
  • Rudi's
  • Turano
  • Ener-G
  • Oro-Wheat
  • Nature's Own
  • Costco
  • Jewel French bread
  • Country Hearth
  • Pot O' Gold
  • Stroehmann's
  • Today's Temptations
  • Dempster's Smart
  • Meier's Italian
  • Freihofer's Stone Ground 100& Whole Wheat

Emergency Stuff

Cereal. It's o.k. Lots of kids take cereal for lunch. Same with Pop-Tarts

Other ready-to-eat milk-free meals:
OK, so most of these are only nominally food. But, they work in a pinch (assuming they have a microwave at school). 

Sunbutter. If they're sick of sunbutter sandwiches, send it with crackers, apples, Rice Crispies and a spoon, graham crackers, bananas.

Bacon in the box. Oh, and waffles or pancakes. (One of the Van's varieties used to be milk/soy free, but we just freeze extras from Sunday.) Use one of those carry-out plastic containers and you have a place for syrup.

Pillsbury rolls and hot dogs. Roll 'em up -- ready in 10 minutes!

Quaker instant oatmeal. Cream of Wheat. Malt-o-Meal. Hey, it happens!

Mrs. D's hash browns or Ore Ida tater tots/fries. You do need to allow time for them to cook, but it doesn't get easier than that.

Boiled eggs. Do a few at the beginning of the week. They're great for salads and wonderful for that day when the bus is coming and the lunch bag is empty.

Toddler stews. My son cannot have peas, but if your child is good for these, there are several options. Just TAKE THEM OUT OF THE CAN so your kid doesn't see what he's eating. Same with baby food. There are several varieties (like the tropical flavors) that are not easy to find in any other form than baby food. Don't get caught!

Popcorn chicken. Get it?
This mom cracks me up.
Popcorn. There's been a lot of press lately about popcorn and antioxidants. I like to keep it handy in case the school calls Child Services about my lunches. 

Just a final's never too soon to allow your CHILD to pack his or her own lunch. It's the best way to ensure they're going to eat what you send them. We used to write the weekly options on the white board so the kids could think about it in advance. It never worked that well, but maybe you'll be a more organized parent than I was. 

And never forget: no child starves when there's food available. Just do your best. They will eventually start eating. 

P.S. If this doesn't do it for you, there are 31 pages of lunch ideas on my old site.

Wednesday, August 8, 2012

The Summer Doldrums

I haven't felt much like blogging the last few weeks. Probably the summer doldrums. Perhaps you're familiar with them?

Some of it is the looming inevitability of another school year. Even though my son is starting his senior year, there are still stresses associated with the start of school. I no longer have the worry of food in the classroom, or appropriate accommodations, but the shopping lists does change as we consider school lunches, and inevitably key items are discontinued that made up last year's lunches.

Additionally, there's the running around to get medication letters completed. We had our FAHF-2 check-up at the end of July, and of course I forgot to bring the permission form with me. That means a round of faxing since our high school will not take a blanket letter, even though the dose is exactly the same as last year.

Looking back, I appreciate my husband's role as stay-at-home-dad and school bully much more than I used to. The paperwork alone is staggering!

One note: if you are working on a school 504 for the first time, I highly recommend my old community as a resource. There are endless examples of 504s on the site, as well as state-specific guidance. Unfortunately, the group had to move from the old home to this new one, due to spam issues with the last host. If you are looking for something specific and don't find it, just ask it's probably on the old site.

The rest of the posting doldrums probably comes from having tried to save the world, one poster at a time, a few too many times this summer. I took a hiatus from ALL chat boards a couple years back because I find them stressful. Even the well-meaning posters often have a very different approach to food allergies, and everyone is very, very sure their way is the only way.

And then...of course...there's the next set of challenges looming in October. At our checkup, the head of the clinical trial chirped "so next time is the exciting appointment!" Not the word I would have picked. But, yes, perhaps it will be exciting too, somewhere under the terror. Oddly, as the summer of massive medication has gone on, my son has gotten more optimistic about the results of the trial as I've become more pessimistic. We have not had one wink of food-allergy trouble all mystery stomach aches or vomiting, no itchy mouth, nada. So, who knows  he very well may be right.

Travelling light with food allergies
The other thing I know that causes summer doldrums is the travel. We don't do much of it during the summer, but this year we did take a few days and visit my brother in another state. I have noticed an interesting phenomenon over the years that I've christened "The Circle of Safety." I seem to have a radius away from our house that doesn't stress me at all. Get beyond that radius, though, and all the worries come out. I look at maps to make sure I know where the hospitals are along the way. I go over the packing list obsessively. I ask my kid "do you have your medicine bag" enough times that he starts making fun of me in response. It takes two days to plan for every day away, which means I need a vacation from the vacation!

I know every mother feels this way. Every trip, every school year, every medical challenge is surmounted one step at a time. But August is that time after the trip and before the school year starts where we can pause at the top of the mountain we just climbed and see the whole range ahead of us. Especially, for us, the gigantic mountain labeled COLLEGE.

My son has told me this summer that he's thinking of a community college. That's o.k. IF (and this is the big if) he's choosing it because he wants the extra time to mature before he leaves home and not simply because it's easier than tackling the really scary mountain of residential food service.

But that's the hell of food allergies, isn't it? It's so intertwined with everything that there's no way to tease out the tendrils of fear that sneak into Some days you gotta just keep walking and not worry so much about where the trail leads.

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