Tuesday, May 29, 2012

Getting What We Need

Lately, I've been somewhat removed from The Quest to Get What My Son Needs. But now, with college, The Quest begins anew.

About a week ago, he came home, beaming from ear to ear. He had been awarded a scholarship from a local organization to attend to a prestigious summer program for juniors interested in government. This is a GIANT deal for him. My son is quiet and shy, so the fact that he was able to impress his interviewers enough to be chosen for this says a lot about how badly he wants to do it. But it's a full week away at a college campus, with hundreds of other kids.

It feels like pushing the boulder up the hill again, writing all these emails to start the process. But write them I did: to the camp organizer, the organization that gave him the scholarship, the campus health service, the food service. And now I wait.

As I sit here, fuming that this is taking so long ("If I have to COOK for the whole week I need to get STARTED, you know!"), it has made me realize that I have gained some insights into what keeps things rolling and what just causes the boulder to settle in deeper. I offer them here to you. (And me. I'm definitely writing this for me. Maybe I'll listen to myself this time.)

1. Don't tell the whole story to everyone. 

I still fight this. I have food allergy diarrhea mouth, as I've established elsewhere. I want everyone to know right away that they're FOOD ALLERGIES and they're SERIOUS and they NEED TO LISTEN!

But usually I get passed from person to person until they actually establish who's going to be responsible for the food, responsible for the health care, responsible for the supervision. At the beginning of the process, the people who will ultimately be responsible are not even necessarily selected yet. (That will be the case with the adult counselors for this program - I am simply writing them a letter, explaining my son's health issues and seemingly excessive medication consumption.) Sending a long email up front just makes us look bonkers. A few sentences will suffice until you've identified the right person.

Likewise, I truly believe that leading with Dead Kid Stories does not help us. Other people just don't have the frame of reference to understand our fear and focusing on the worst-case scenario can make us seem over the top.

2. Don't carry over resentment from the last battle.

Yes, it was really hard to deal with that Outdoor Ed guy. Yes, he made a mistake and missed an ingredient that could have resulted in a reaction. But leading with that story just makes them defensive because they will identify with people in similar roles to their own.

If there's something to be learned from the incident, try to make it neutral ("we've found that it can be hard for people unfamiliar with our son's allergies to catch all problem ingredients") instead of specific ("yeah, that last food service guy totally screwed up"). It also never hurts to express faith that they are competent at doing their job, even if you don't know (or believe) they are. Butter the toast, baby!

3. When you find the right person, be specific and factual about what you need.

People don't read any more. (I like to think my blog is an exception...but really - shorter is better.)

That means make a LIST with ACTION words. Any sentences that start with "We think" or "We feel" or "In the past" should be ruthlessly removed from letters and replaced with sentences that include an action, a participant and a timeline:
I will need to review all labels prior to the start of camp
You will need to develop a set menu by 5/30 so we can review it together
We all want to tell our story to channel our anxiety, but that's not as important as getting at the heart of what it is we're asking them to do.

4. Show a united front.

I always copy in my husband and I use his work email. That tells the people on the other end that they are dealing with TWO crazy parents (and that one of them works for a respectable company that must see SOMETHING in him). And yes, I've found that his maleness and tallness can also be key weapons in getting people to pay attention and not condescend.

We don't have to like sexism to use it to our advantage.

5. Keep it simple and look for the obvious pitfalls. 

I felt pretty good when I heard the food service person say "a lot of mothers of milk-allergic kids have just sent desserts and breads." Smart decision! There's no way a food service is going to get these areas right, since finding these things (and even making them) can be a challenge. Don't ask them to do flawlessly things that you have difficulty doing yourself.

6. Be honest about your child's capabilities. 

It's easy to feel defensive about whether our children are ready to be on their own. But it's really important to give an honest assessment of their capabilities with:
  • Reading labels
  • Advocating for their own needs (finding food service, speaking up if something doesn't look right, questioning adults about ingredients in prepared meals)
  • Self-administering medication 
  • Understanding that an adult has to be contacted IMMEDIATELY if a reaction is suspected, even if that means they are the awkward center of attention
If they can't do these things, we are responsible for ensuring there's an adult there to help, even if that adult has to be us. Don't let the school or camp shame you into not attending if you really feel you need to be there!

7. Do a walk-through with your child. 

If it's possible to do this on location, great! If not, you'll have to do a little acting.

Walking through the event with a series of questions is a great way to uncover issues you haven't thought through enough. Here are some of the "walk through" questions we've started to compile:
  • Is there space on the bus for your food? Can you carry everything once you get there? If not, who will help you? (Or will I need to drive down with you...)
  • Where is the freezer/pantry to store foods? Can you put things in the freezer right away, or are there activities right when you get there?  
  • Who are you going to tell about your allergy? What will you do if your roommate brings a bunch of peanut butter with him?
  • Will your meals be prepared at the same time, before, or after the others? Who is your contact in the cafeteria? What questions will you need to ask them about each preparation?
  • How will you carry medication and ensure it travels with you if there's an emergency?
You can see my point. Envisioning each step along the way uncovers all sorts of opportunities for problems (unclaimed, thawing food left out with luggage, no time for meal prep, isolation, social issues...). It's much better to talk through it all prior to the event than deal with the phone calls (assuming they're even allowed) at the event. 

8. Take ONE step at a time and ask for help. 

It's a big boulder. They're ALL big boulders and they just get bigger as our kids get bigger. But they can all be pushed, and it's much easier to do it with a group.

There are always going to be people who don't get it. After a while, it's easy to think of everyone as just another boulder in your path up the mountain. With some people, there's nothing we can do but go around them. But many people will help if we let them...and if we don't let our assumptions and prior experiences color our interactions.

Yes, there are times when I'm pushing the boulder that I just want to step out of the way and FLATTEN some of the people I'm dealing with. But every step is worth it when we see our children standing at the top, successful in one more step toward independence. 

9. Give Don Quixote Junior the lance. 

I protect my kid too much. I do too much for him. "But it's hard!" I say to myself. "There will be time for him to learn it all...he should just have fun now."

That's when I have to take the helicopter mom inside myself and shake her silly. "Time's a tickin' -- let HIM write the emails!"

Why is it so hard to let our children do what they are capable of doing? Am I so happy to have this job that I really want it forever?

10. Don't listen to that little voice. 

I wrote tips 1-8 last week. When I came back to this, it felt like a load of crap.

See, today I feel overwhelmed by what's required. I don't WANT to call this woman and follow up. I'm afraid she's going to be mean, or condescending, or clueless. I'm afraid my child will never be self-sufficient enough to leave home. I'm afraid he'll die at camp because I didn't do a careful-enough job.

That little voice  the one that just whispered "can't do...she's mean...she hates you...you're a bad mother...you're going to fail" needs to be SUCKED OUT INTO THE VORTEX OF SPACE!

None of the voices in my head ever have good ideas. Why do I keep listening to them?

Time to call the camp director. Wish me luck.

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Wednesday, May 23, 2012

My Food-Allergy Halo Needs Some Tarnish Cleaner

I want credit!

It was a pretty typical weekend for us. My son came home hungry Friday (when does he not?), so I made egg rolls at the same time I was finishing the ladyfingers. Saturday: made the fake tiramisu layers and assembled it. After all that, we get to the party  and someone brought an unsafe cake.

I don't think I'm that bad a party guest. So what if I spent most of the party hovered over the tiramisu, trying to prevent people from double dipping or dropping cake parts into the bowl? After all that work, I wanted to take the leftovers home, dammit! And so what if I made one or two snide comments about people who bring cake without warning? It's not like those people were close relatives!

On Sunday, I went for a walk with a friend. I spent the first 20 minutes talking about the agonies of trying to get things organized for my son's week at a college summer program. Calls about food, emails about food, emails about campus healthcare, options for carrying meds... After I'd been going on for a while, the light went on in her eyes and she said "oh yeah, your son has FOOD allergies!" She clearly had no idea what I was talking about all that time.

Is it even possible to "get credit" in a world that is so OBLIVIOUS to what we go through? Got me wondering philosophical thoughts:
If a mommy falls down in the food allergy forest and no one is around to hear her scream, does she make any sound?
What's the point of polishing one's halo if no one can even see it?

Oh well. *I* know I'm a saint. I'm sure you are too. I'll pat your virtual back if you'll pat mine.

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World's Simplest Egg Rolls

One safe precooked sausage - we like Amy's, but even breakfast sausage works great
1/4 of a small cabbage
Any other veggies you want/have - carrots, mushrooms, tomatoes, onion all work great
A nice big chunk of ginger root. (I buy it, peel it, dice it and keep it in a Mason jar in my freezer.)
A dash of Worchestershire sauce, sriracha chili paste, or any other hot sauce you like
Fresh cilantro, if you want/have

Whirl all this together in the Cuisinart or blender. 

To assemble, you'll need safe wonton wrappers (I use Nasoya), a binding agent (I use beaten egg, but you can use plain water if you have egg allergy), a place to assemble, a brush and your mixture. I also like to use a Tbsp. measure to create the little mounds inside each egg roll. I make smaller ones as they cook faster, but you can get the longer shells and make traditional egg rolls too.

You'll also need a deep fryer or a pan. I use a stainless steel small pot. WARNING: deep frying in a pot will wreck it. Once you've chosen a pot for this, it's your forever frying pot. Don't use Teflon®-lined pots — they don't withstand the heat.

Assemble by brushing sealer on the top and right edge of the wrapper. Put your filling in the middle and fold so the edge of the top layer falls just short of the bottom layer. You can then fold the bottom over the two sides to keep the filling more secure.

Gently place each in the heated pan. (You don't need to fill with oil - just cover the bottom so there's enough to cook one side.) I give them about 20-30 seconds a side, and then drain on paper towels. They're great with mustard mixed with honey, or a little apricot jam mixed with vinegar.

World's Not-So Simple Fake Tiramisu 

Make the ladyfingers. You do NOT need to pipe these from a pastry bag unless you care that much about what they look like. I just use a spoon and spread them on parchment paper.

Make the syrup: 1/2 cup water, 2 tsp instant coffee, 1 tsp (or more) rum (optional)

Make the pudding layer:
1/2 cup sugar
3 Tbsps cocoa powder

2 3/4 cups Rice Dream or other safe sub
1/4 cup cornstarch
Dash salt

Bring to a boil, reduce heat and cook until thickened. When thick enough, remove from heat and stir in 2 ounces rich chocolate (I use Sharffen Berger bittersweet) and a tsp. vanilla

Make the cream layer:
1 carton Rich's Rich Whip

Whip until thick, like whip cream. Stir in 1/4 cup of the coffee mixture.

Layer the ladyfingers and pour remaining coffee mixture over them. Layer the pudding, then the cream, then top with additional ladyfingers and grated chocolate if you like. (I also use cocoa nibs - crunchy!) Cool thoroughly before your party.

Stand over bowl and guard it from contamination during party. (Optional, I suppose.)

Sunday, May 20, 2012

Conditioning Our Food-Allergic Children

Thank you to everyone who supported my last blog post. I did not expect my opinion to be popular and was really touched by the support I received. ("Mom! There really ARE people in the world like me!")

However, as always, there were critics. The main criticism seemed to be: "we NEED horror stories in order to keep our children safe."


What we're talking about is conditioning. We all do it as parents from almost the day our children are born:

Say thank you, darling.
Don't wipe your snot on your hand! Use a tissue!
Quit hitting your brother!

(Well, o.k., some of you probably condition slightly differently than I do.)

Food allergy conditioning takes both positive and negative forms:

1. Avoiding food. No casual sampling at grocery stores. No unknown cake at parties. Smile politely and nibble the parsley at buffets. Get only a soda if your friends go to a restaurant. We teach our children to delay gratification every single day in a world filled to the brim with temptations. The question is: do all children have the same capacity for delaying gratification (i.e., avoiding allergenic foods)?

The video above documents the famous "Stanford Marshmallow Experiment" in which children ranging in age from 4 to 6 are offered a marshmallow. If they can wait until the researcher returns, they're promised TWO marshmallows.

About 70% of children tested do not eat the marshmallow. And  guess what  later in life, their ability to delay gratification correlated with higher SAT scores and general school success.

So what does this mean for us allergy mothers? Children can be conditioned to avoid foods/delay gratification. However, continuous reinforcement is required for many kids. Most will give up the Halloween candy if the promise of the toy they're trading it for is large enough and talked about enough, and if they have developed enough natural ability to wait. But a large percentage simply cannot wait. They are hard-wired to have more trouble. If you have one of these children, you're going to work twice as hard and twice as long at conditioning avoidance as other mothers, and there may be a genetic set-up that simply makes your child more impulsive, no matter what you do.

2. Checking ingredient labels. Read every label, every time. That seems so straightforward! So why do children so often turn that into "read labels when a food looks different"?

My mother, the clinical psychologist, tells me that this is a brain immaturity issue. Grouping objects ("I know all pretzels are safe") is the way they develop a manageable frame of reference for the world. However, that frame of reference is being continually refined. By kindergarten, most kids can group objects using two variables ("pretzels that are safe for me" vs. "pretzels that are not safe for me"). However, the sets and subsets of safe foods and ingredients can be very complex, meaning that children have a difficult time consistently grouping items until well into grade school ("Newman's Organic pretzel rods that are safe for me vs. Frito Lay RoldGold pretzel twists that are not safe for me).

Reading a label also requires a number of skills we don't even think about as adults. We know that ingredients make up foods, and that foods that look the same can have very different ingredients. We need to have the vocabulary and spelling skills to be able to interpret difficult ingredients. We need to understand grammatical rules of punctuation and grouping (e.g., "soy flour" vs. "soybean oil, flour"). We need to hunt for information that appears in different places, without dependable patterns. We need to consider somewhat esoteric factors ("was this chocolate manufactured in Europe where labeling rules are different?"). We may need to understand whether a food is regulated by one agency vs. another (such as the FDA/USDA division in the U.S.). We need to double-check our work.

So, in addition to conditioning our children to read labels, we also need to teach these skills sets, some of which are not fully in place until the teen years.

3. Carrying medication. A teen boy's pathological need to avoid carrying anything that looks even REMOTELY like a purse and a teen girl's pathological need to fashionably fit with her friends makes this one a project for all of childhood. It isn't just about forgetting. It's also about image, which means it needs to be renegotiated as the child's self image changes.

It seems like a good idea to get our children used to wearing their medicine on a belt or clipped pouch at an early age. But, social issues quickly creep in. Teasing about the "bulge", changing for jr. high gym class, fashion...all can make our kids toss our careful conditioning out the window.

We can look for the obvious opportunities to help our kids blend in. A set of medication in the school backpack is easy. A bag on the back of a bike is usually acceptable. An Epi in a coat pocket, or cargo shorts. But conditioning our children to always carry medication usually means conditioning them to carry it in the same way every time. That's where parents of teens run into trouble.

And, conditioning requires reinforcement. In the marshmallow study, kids get the marshmallow. When it comes to carrying medication, there is no marshmallow. Kids have to consistently do something that has no reward, and often has a social consequence from their perspective. It's easy to see why carrying meds becomes a flash point.

Interestingly, the best defense against risky behavior seems somewhat counterintuitive: arguing with your teen. A recent study showed that effective, give-and-take arguing with parents actually helps kids resist peer pressure. In situations where mothers continually reasserted their view and the teen backed down, the teens were later MORE likely to take risks than in situations where mothers listened to their teen's opinion and ceded some autonomy. In other words, teens who agree with their mothers the most are also the ones most likely to ditch their medicine bags once they leave the house.

I don't think there are any easy answers on this one. A bad reaction can help reinforce the need to carry medication, but that's a very dangerous method of training. Perhaps the e-cue epinephrine device (supposedly coming to market in November) will make a difference for our kids.

I suppose the point of this post is to question the practice of using anaphylaxis deaths as a means to reinforce conditioning. If you look at these three areas where conditioning is required, brain development and acquisition of skill sets is also required. No amount of fear is going to help a child learn the complexities of label reading, or learn to group object sets faster. And, as I pointed out in my post about exaggerating food allergies, constantly harping on death, a consequence a child is often developmentally unable to process, can cause a child to become desensitized and overly pessimistic.

We can make our kids feel helpless and hopeless with horror stories. Or, we can give them the training and conditioning they need to effectively manage their allergy, along with a positive outlook and belief that they can manage their allergy.

Isn't it time to limit the ghost stories to the family campfire? Much better to spend the time on label reading, appropriate avoidance and carrying meds so we can ALL safely enjoy the s'mores.

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Thursday, May 17, 2012

A Letter to The Mom Whose Son Just Died

Dear grieving mother:

I'm not going to put your name, or your son's name, in my column. But I know there are dozens of support sites, bloggers and magazines that are doing just that today. The sad reality is that allergy deaths sell, and underneath the food allergy support community is a big money-making machine.

But I want to do what I can to apologize for my community. Because I know what you're going to find when you Google your son's name in a month, or a year, or when you've put the freshness of your grief behind you. Maybe you'll run across my column, even without a link to his name.

I'm so sorry that you'll find parents who look like they're blaming you. Oh, they'll couch it in terms like "it's just so sad they didn't get educated by their doctor or the internet." But, underneath, they're going to take apart your choices to let your child eat at a buffet, without an Epi-Pen. I know why they do it. They need to distance themselves from you, to essentially say "this could never happen to my child because I'm a better parent who makes better choices." But I know it's going to be heartbreaking for you to read their blame, and I'm sorry that you'll have to.

Keep in mind that the vast majority of these parents do not yet have teenagers. The uptick in food allergies has increased exponentially since the early '90's, so your 15-year-old was one of the oldest allergic kids. My son is 17, so I have had some experience with "but my med bag looks like a purse, Mom!" and with wanting to fit in with other kids. Peer pressure is rough. Parents who still have the illusion of control because their child is five, or nine, may not have the same opinion in a few years when their child is 15, or 17.

They also may not understand that precautions that worked can suddenly stop working during the teen years. Your son died at the height of the pollen season, at the onset of puberty. The reality is that there may have been nothing anyone could have done to stop the reaction. I read that he got at least some epinephrine    there's simply no guarantee that more would have made a difference. You won't see that posted much on the boards you read because it scares the crap out of other moms. They would much rather believe you did something wrong than to believe it could happen to anyone. But it COULD happen to anyone. I'm just so sorry it happened to you.

I am not going to post on your son's Facebook memorial page. I know you are faced with the tough choice of making the page private and having to screen for those who really knew your son and might need the chance to interact and remember him, or leaving it public and allowing anyone to post. And they WILL post. The mothers from my community will feel the need to leave their condolences. They won't take into account that there are soccer friends and community members and teachers whose posts will get lost because they overwhelm your board.

Perhaps you'll become an advocate for the food allergy community in the hope that some good can come from your child's death. Or perhaps you'll  tell us all to screw ourselves and leave you alone. Unfortunately, only the first role is going to be supported and I'm more sorry for that than I can say. Regardless of what you choose, they will use your son's name as a lesson to scare their kids, and as fodder for any parent who might stray from the path of the most rigid precautions.

Yes, it's human nature. But human nature is ugly. I'm so sorry you'll have to deal with all of this on top of your son's death. If he had died in a car crash, or from drowning, or from any of the other myriad common ways we lose teens, he would not be splashed all over the internet. I'm sorry you didn't get to choose this. I'm sorry that, even if you do choose to fight it, there's nothing you can do to control it. I'm sorry for my community. They do a lot of good, but at times like this I'm just ashamed.



To my readers: I realize a lot of you will be pissed off and say "but I didn't mean it that way" when you read this. You'll may even unsubscribe from my blog. I'm angry enough that it's worth it to me to have at least had my say. Please - have the decency to just leave this family alone and not dissect their choices. They haven't even BURIED their child yet!

Tuesday, May 15, 2012

Food Allergy Public Service Announcements

You may have seen some of the new PSA-type graphics going around the various advocacy groups. This one is from the Arizona Food Allergy Alliance.

I'm not exactly sure what's going on here. I think most people would look at this and ask "there is no cure for eating?" Even if you assume people knows it's about food allergies, I can't figure out who the audience is supposed to be. Sadistic mothers who keep delicious bins of cookies on the kitchen counter that their allergic child cannot eat? Parents who don't supervise their kids during playdates?

Snark aside, though, I've seen a lot of these type of graphics floating around lately. Apparently the popularity of Pinterest has made it important to capture your message with an image and 10 words. So...in the interest of doing my part for Food Allergy Awareness Week, I offer my own public service announcements.


Designed for every friend or relative who's ever asked you why you don't just get "one of those pen/needle thingies", or whether you've heard that they've cured allergies.

Tired of your kid being left off the birthday list because "it's just too much hassle" to invite him or her? Now there's a special message you can send to the parent of the birthday child!

Ah, society moms. Their judgments are always so helpful. Walk a mile in my Clarks before you come knocking on my door, lady!

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Saturday, May 12, 2012

In The Food Allergy Night Kitchen

RIP, Maurice Sendak. (And say hello to Dr. Seuss, if you would.)

"I'm allergic to shellfish and cow's milk and tree nuts"
Said Sylvester McDaisy McPeanut
"Just as I thought there was nowhere to eat,
Your lovely café just appeared on this street!"

"Do you think you can bake me a blueberry pie?
Just no nuts or milk, or I'll probably die!"
And he handed the menu to François with a bleat:
"Hurry it up, man, I need something to EAT!"

"What was that all about?" asked the manager, Scott

"Oh, he's making up allergies right on the spot.
We never had 'allergies' when I was little!
I'LL give him allergies - hot off the griddle!"

"No, don't do THAT," said Scott, with a smirk
"He'll probably sue if he's that big a jerk.
Of course, he can't WIN for a wayward ingredient
But let's skip the hassle - just go be obedient"

So François placed the order, but couldn't stop his pout
"No nuts and no milk in this pie!" went his shout
Cook said "come again?" but to no avail
For he saw only François's diminishing tail

"No milk and no nutmeg, that's what I heard.
"Milk's not in butter, why, that'd be absurd!
There's just butter in pies, nutmeg's just for the cakes
I'll finish this praline, and then pie I'll make!"

With his favorite knife, the one he could trust
He finished the pecans and started the crust
He grabbed a big bowl - he could use it today
'Cause they'd already finished the shrimp salad buffet

Didn't look very clean, but then Luis was so sick!
He probably washed all the dishes too quick
"Chop, chop, time's a-wasting" thought Cook with a hiccup
And he mixed up the pie and rang for its pickup

They all met again, many months later
In the courtroom of Justice MacJustice MacGrader
"It's clear to me" said the good Justice, "you're crazy!
Mr. Sylvester McPeanut McDaisy!"

"You can't expect them to know what's in their food!
To keep their knives clean with a good attitude
To wash out the places they prep, and their dishes
These types of precautions are magical wishes!"

"You didn't tell  François you're allergic to shrimp,
Can you blame him for thinking "allergic" means wimp?
I'm dismissing your case," he said, with a stern gaze
"You simply must learn to stay OUT of cafes!"


I realize, kids, that this moanin' and bitchin'

Won't change all that happens within the Night Kitchen

Long as foodies call allergies "minor" or "fake"

There's no way to know what you'll find in the cake

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Friday, May 11, 2012

A Peanut Allergy Cure Has Been Discovered!

And now it's the day after.

What do you do? How will your life change?

I was struck today by the comments on various message boards surrounding Hugh Sampson's statement that food allergy oral tolerance therapies are not ready for prime time. This isn't really surprising — it's something doctors have been saying for some time if you read beyond the sensationalist headlines. Many of the kids in these studies do not achieve true tolerance. They are only able to eat MORE of the allergen. When stressors on the immune system occur (illness, environmental allergies, menses), their desensitization level can change, causing reactions to an amount of the food that was fine just the day before.

However, there's another side to the controversy. If you read the synopsis of the AAAAI discussion about oral tolerance studies, you'll see an important point:
Quality of life in patients on peanut OIT vs. avoidance was remarkably improved - 90% improvement in QOL scores.
90% of kids (and presumably their parents) felt that the therapy had helped them to be happier. To fit in better. To live like a "normal" kid.

As my son has gone through the introduction of baked milk, and now the FAHF-2 clinical trial, I've had to confront head-on my fears. As I've indicated in other blog posts, baked milk tolerance is not easy. There are very definitely symptoms. The FAHF-2 dosing has also not been easy so far. My son has low-grade congestion much of the time. A mystery stomach-ache. Are they side effects? If so, how can I do this to him?

Which brings me to that peanut cure. Maybe it will turn out to be FAHF-2. Maybe they'll discover the trick to making oral tolerance more effective. Maybe it will be the peanut patch.

Whatever the cure turns out to be...how much risk are you willing to take? How much discomfort will you tolerate?

We are a VERY risk-adverse community. I am concerned that many parents will simply turn down the opportunity for a cure if it involves even the smallest risk or discomfort. And the odds are, based on what we've experienced so far, that it will involve one or both.

Envision yourself the day after treatment ends. Where would you go? What would you eat? What would it feel like to never have to explain allergies again? To add spontaneity back into your life? To not worry constantly when your child is eating out? Sleeping over? Growing up?

It can be hard to even hope again. It can be even harder to discard the precautions and even phobias we've put in place. But it may be the cost of a cure.

Every young mother faces this dilemma the first time she takes her new baby in for the 2-month check-up. There are risks to vaccines. They are minor, but real. How can I do it to my beloved baby? And yet the benefits are very clear.

It's possible to avoid the shot, and therefore the risk. It's possible to find others on the Internet who will tell you that you did the right thing, that all risk is unthinkable and vaccines are a conspiracy. Most of us choose to take the risk in the name of the greater good.

The day is coming. There are more clinical trials than ever going on. Are you ready to choose when the cure finally arrives?

Maybe it's already here.

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Monday, May 7, 2012

The Food Allergy Anxiety Test

Today's post is a social experiment, FAB style.

After a few months of writing this blog, I discovered a startling fact: there are people in the food allergy community who really don't like my opinion. (Me? Bitchy little me? Shocking!)

Often, my hate mail has a common thread to it: you couldn't possibly have these opinions and really have a child with severe food allergies. The accusation comes out in various ways: talk about how their child is "more" allergic or my child hasn't experienced "real anaphylaxis" or I "don't understand the risk."

(How exactly does one get the "real allergy" badge from the allergy community if four epinephrine-requiring reactions and two clinical trials don't make the grade? I just recently had someone who knows my child's history ask whether my child had taken the uKnow peanut component test. We have not, but my guess is that my opinions would still be suspect, even with the piece of paper in hand.)

All of this has led me to a hypothesis: do we need to believe our children are "super" allergic in order to justify the extreme precautions we take? Does the severity of a child's previous reactions really correspond to the precautions a parent puts in place?

Below are a list of what I call avoidance and immersive behaviors:
Avoidance behaviors: precautions we take to stay away from people, places or things because of food allergies.

Immersive behaviors: interactions we would not choose to have if our child was not allergic to food(s).
Yes, I realize that the behaviors described below are not necessarily all extreme. And yes (so for God's sake, don't email me!) I realize that allergies can become severe after having stayed mild for years. But there has to be a limit to what we'll do or our children will go the other direction and end up with anxiety disorders. The tightrope between "safe" and "mentally healthy" lies somewhere in the day-to-day choices we make. So...

Take the Food Allergy Anxiety Test!

Is our choice to avoid and immerse ourselves really related to the severity of our child's past reactions?

Give yourself ONE point for each "yes" answer, unless more points are indicated in ()

Have you ever AVOIDED either entirely or partly BECAUSE OF FOOD ALLERGIES:
  • A food to which your child had never demonstrated a reaction and which your doctor has indicated should not be an issue
  • A food to which your doctor says your child is not likely to be allergic, but that you perceive as still causing symptoms
  • A food for which your child has passed a food challenge, but that you perceive as still causing symptoms (2 points)
  • A processed food with a safe ingredient label because "it just didn't feel right"
  • A processed food because of a concern/complaint you read on-line 
  • A food in a related botanical family to which your child has not demonstrated a reaction  (i.e., avoiding mango because of a cashew allergy), other than those your doctor has indicated you should avoid (1 point for each food you are avoiding or 2 points for each entire group such as "beans")
  • A birthday party to which your child was invited 
  • A play date  to which your child was invited  
  • A sleepover party  to which your child was invited (3rd grade or older)
  • A party with family or friends that included food (3 points for each relative's house you refuse to go to because of food issues)
  • Starting preschool at age 3 (Remember: this is only if the decision was partly or entirely related to allergies. If you can truly say your child was just not ready and it had nothing to do with allergies, you don't get the point.)
  • Sending your child to preschool at all (2 points)
  • Sending your child to school (i.e., choosing to homeschool) (5 points)
  • Taking your child to a playground, supermarket, movie theater or other public place even partly because of food allergies (2 points)
  • Letting your child attend a jr. high school outdoor ed program or other weekend
  • Overnight summer camp
  • Day-only summer camp (2 points)
  • Vaccinating your child (without your doctor's concurrence, as in the case of egg allergy/flu vaccine) 
  • Touching (allowing your child to touch) wrapped peanut products or jarred peanut butter (2 points)
  • A food challenge your doctor would like to do (3 points)
  • Scratch testing (SPT) your doctor would like to perform because you perceive it as dangerous (5 points)
  • Travelling on a cruise/internationally because of healthcare concerns
  • Travelling on a plane because of peanut contamination (2 points)
  • Local travel (2 points)
  • Full-time work (either choosing a part-time schedule or quitting your job) (3 points)
  • Date night:
    0 points = you've been on a couple-only date within the last month
    2 points = your last couple date was 3 months or longer
    3 points = your last couple date was 6 months or longer
    5 points = you've never left your children
  • Respite care:
    0 point = 3 or more individuals you can call/trust to care for your FA child in an emergency
    2 points = 2 individuals
    3 points = only one individual
    5 points = there's no one who's trained and who I could trust to care for my child in an emergency

Give yourself ONE point for each yes answer, unless more points are indicated in ()

In which of these ways have you IMMERSED yourself in the world of food allergies?
  • Visit, or have visited, an online chat board at least once a week for a year
  • Joined a local support group 
  • Visit, or have visited, an online chat board at least every other day for a year (2 points)
  • Paid a fee to join or support an online community (3 points)
  • Manage or moderate a local support group or online chat board (5 points
  • Have 5 Facebook friends that you met online due to food allergies
  • Have 10 or more Facebook friends that you met online due to food allergies (2 points)
  • Have 20 or more Facebook friends that you met online due to food allergies (5 points)
  • Talked about food allergies too much (your call) in social settings
  • Tweet about food allergies (2 points)
  • Read an article about a food allergy death within the last year
  • Googled the name of a child who died from a food allergy within the last year (2 points)
  • Emailed the parent of a child who died from food allergies or commented on a memorial board (assuming, of course, that you did not know the child IRL) (3 points)
  • Commented on a news article related to food allergies
  • Returned to comment multiple times to "defend your position" on an article related to food allergies (2 points
  • Taunted or ridiculed a parent online who had a different opinion than yours on food allergies (3 points)*
  • Villainized the peanut industry or peanut products 
  • Used your child's possible death from a food allergy to make a point in an argument either IRL or a chat board (i.e., "you should support peanut bans because peanuts could KILL my child")
  • Told someone else their child could die as a result of their choices (2 points)
  • Copied in a dead child's parent to win an argument (100 points - you know who you are)
  • Belonged to FAAN and/or contributed to FAI within the last 3 years
  • Attended a FAAN conference or participated in a FAAN walk (2 points)
  • Trained school personnel on food allergies (not just your child's teacher) (2 points)
  • Taken a job at the school (either paid or volunteer) to be close to your child (3 points)
  • Involved a lawyer or the DOJ/ADA in a dispute with your school (5 points
  • Purchased a food allergy-sensing dog (5 points
Which of these best describes your child's HISTORY of reactions?
  1. Diagnosed only on the basis of testing - no history of reactions
  2. Hives-only reaction
  3. Reaction(s) involving two or more body systems: swelling, vomiting, cutaneous (hives/flushing), wheezing or changes in breathing, faintness for which epinephrine was not given
  4. Reaction(s) involving two or more body systems: swelling, vomiting, cutaneous (hives/flushing), wheezing or changes in breathing, faintness for which epinephrine was given by you
  5. Reaction(s) involving two or more body systems: swelling, vomiting, cutaneous (hives/flushing), wheezing or changes in breathing, faintness for which epinephrine was given by a medical professional (EMT, school nurse, allergist, ER doctor)
  6. Overnight hospitalization for a reaction
  7. Hospitalization of more than one day for a reaction
  8. Intubation and/or resuscitation during a reaction by a medical professional

O.k., you're done! If you feel like being brave, post your three scores (they should look like this: 12, 23, 4) in the comments section. 

I'll go first. Man, I hate admitting it. There's a reason I had no trouble coming up with this list.

*Yes, the Bitchie Awards means I'm going to get these three points!

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Thursday, May 3, 2012

We Need Milk Bans in Elementary Schools!

My son is allergic to milk. It's not a gut-only allergy - it's full-out anaphylaxis. His milk reactions have been much worse than any other reaction including peanut: vomiting, wheezing, hives, extreme congestion, that sense of doom...

So, given the severity of his allergy, I think all schools should ban milk to accommodate children like him.

Just take a moment and think about what went through your head. Really consider trying to ban milk from your child's diet (assuming he/she is not allergic, of course). No cheese. Only one or two brands of bread, and they're hard to find. Virtually no baked goods or desserts. Even many deli meats have milk as flavorings or fillers. Casein in canned tuna. Butter in soup bases.

Could you do it? Would you do it?

Over the years, I've posed this theoretical question on various chat boards and, without fail, virtually all other allergic parents rejected outright the idea of banning milk. I'm usually given reasons like the following:

It's just too hard - it's in too much. Huh. Wonder how my household does it.

Milk allergy is not as severe as peanut allergy. Not always true. Milk allergy, in its extreme form, is not as prevalent in the population as peanut. However, there have been many cases of milk-induced anaphylaxis and some fatalities. 1, 2

Milk isn't as sticky as peanut butter. Hello? Milk spills!

The pinnacle of bitterness for me was the day I had a PA-only parent tell me "you're just angry because I can get a ban at my school and you can't." It's easier to marginalize my son by asserting that his allergy is not serious or that the societal burden is too great than to do what it would take to keep him safer. 

Sounds like what other parents do to us with regard to peanuts.

We want the school to be peanut-free so we do the mental gymnastics required to get there, even if it means marginalizing other kids. If we get challenged, we pull out the death card ("but peanuts can cause death! Your child will only be inconvenienced!"). But to get what we want, we have to willfully ignore those other kids who really do eat mostly peanut butter. Some of them are autistic. Some diabetic. Even for the parents who want to try, banning peanut butter to them feels like banning milk does to you. There are lots of weird ingredients rules. (Does "may contain" count? What if my pans had peanut butter cookies on them last time?)

I'm obviously not a believer in peanut bans. Not because I wasn't able to ban milk (thank you, compassionate allergic parent - it's been several years, yet that comment is still sticking with me like peanut butter), but because I believe the long-term harm to our community is greater than the short-term value. IMO, getting food out of classrooms is a much more important (and obtainable) goal than getting peanuts out of schools.

FAAN has taken a lot of flack over the years for their phrase "false sense of security." However, I think what they were trying to say in a politically-correct way is: there is a sub-segment of the population who will respond to a ban with anger and subterfuge. If you ask for a peanut ban, you can almost guarantee there are parents who will send peanuts just to make a point. Personally, I would rather have the school assume that every lunch bag contains peanuts than have badly-trained cafeteria monitors thinking the school is peanut-free and therefore Johnny's coughing fit and flushing must just be a cold. You can't legislate empathy and schools are not prepared to do the lunch checking and label reading to make a peanut ban truly work.

Yes, there are some instances where a child has a true contact allergy where a ban is needed. Yes, peanut bans make perfect sense in preschools where children are still so tactile that their slobber is everywhere. But asking for a knee-jerk ban on peanuts at the elementary level for children without a demonstrated contact allergy will cause a huge backlash. We're already seeing it. We end up making our kids less safe.

I could write forever on the topic of peanut bans. If you believe in them, though, I know I'm not going to change your mind. I'll just go back to my "not really allergic" or "too inconvenient" corner and suck on my bitter, milk-free beverage. Maybe one of the moms of the diabetic or autistic kids will talk to me.

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