Saturday, December 29, 2012

The 13th Day of Christmas with Food Allergies


Does having food allergies in the family make you bitter?

I'm digging really deep for gratefulness this year. I have no problem when it comes to my nuclear family. I am so grateful for the gift of my husband and children, and for this time over the Christmas holidays to see at least a little of them.

But I also feel that, every year around this time, I need to get away from the getaway because my extended family can be so frickin' NUTS.

The thing is, I don't even have it as bad as most of you. One side of my family is just great about the allergies. My own sister and mother are fantastic. But my brother and sister-in-law don't believe in the allergies, so they (subtly) don't support them.

This year, when I asked about ingredients and what they were serving, my brother aggressively declared that he "pretty much" knew what my son could eat so I didn't need to check everything. But then, inevitably, came the email: "can he have soy protein isolate?" Nope. He can't. Tell me how I trust anything after that email.

We get to their house and there's a list of all the things they think are safe for my son. Bean dip is the first item on the list. Nope...still allergic to beans. Seventeen years he's been allergic to beans. They've been given lists of the allergens, we've talked through it numerous times...but they can't or won't remember, so everything he puts in his mouth, the entire night, is suspect.

When I ask about labels, I'm pointed to the garbage. There's nothing that says Christmas like poking through the garbage for a half hour.

We do have ways around this. My mother understands the situation and always ensures she brings a few things so my son has some choice. My husband (who somehow seems less bat-shit to them than me) questions them about ingredients for the things we think may be safe. My son knows to stick with the items that have simple and as-vetted-as-possible ingredients. BUT...everything he puts in his mouth, all Christmas Eve long, is really a crap-shoot. It's hard to relax and enjoy the holiday, knowing that there's a real possibility of going to the ER.

I actually started this column last January because of the stress from Christmas. When I go back and read that first post, I was even more wigged out and angry than I am now. I know that talking about it (and writing about it) does help some to defuse the stress and resentment, but it's also like constantly licking the wound, over and over.

I want to be grateful. I do try to look at the other side, which is that they're doing their best, even though their best is dangerous and half-assed. But there's a little voice in my head that says they're not doing their best: they're acting out their passive-aggressive judgments about me and my kid. They're screwing up ingredients, not because they're not capable, but because they really don't believe it and want to see what will happen. They're willing to play Russian roulette with my kid.

Family is so important. We've held it together for 17 years now, Christmas after Christmas. Through crazy, behind-the-scenes review of ingredients and sheer dumb luck, we've never had a problem. But I remind myself that it also means they're taking more care about ingredients than it may appear on the surface because he's never had a problem. 

So, during these 12 days of Christmas, I am praying for the grace to be grateful. To see the good instead of the bitter. I'm only four days in. By the 13th day of Christmas, I hope to be back in the Christmas spirit.

Just in time for the next (last) round of FAHF-2 food challenges.


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Tuesday, October 16, 2012

FAHF-2: The Holy Grail?


So my son had his second peanut challenge yesterday.

It has been a LONG quest. As I mentioned in last week's post, he took somewhere around 4600 pills over the last 6 months. During that time, we had no idea whether what he was taking was placebo or the real medication.

Yesterday, we girded our loins and got in the car before sunrise, knowing that this time it was no rehearsal. Since he had no issues with the applesauce on Thursday, we knew the poisoned apple (sauce) was waiting.

As with previous challenges, there were 11 little applesauce containers lined up on the counter of the exam room. After placing an I.V. line and doing some preliminary vitals, the clinical manager handed him the first container.

For the next two hours, I did my best to either read or pretend to read while other people asked him how he felt. Any change? No change from last time? Do you feel o.k. to go on to the next dose?

He did.

Around Dose 4, everyone started visiting a little more. Dose 4 was where he had started noticing the sensation of throat closing last time around. Dose 5 was where it escalated a little; Dose 6 was where they had called it off. 490mg total peanut protein.

Dose 5 came and went uneventfully. Dose 6. Dose 7.

Around Dose 8, my son finally said "I can tell it has peanut it in. I'm starting to feel something in my throat." When asked what the sensation was on a scale from 1 to 10, he answered "1".

Things moved more slowly then. After Dose 9, the sensation in his throat moved up to a "2". After Dose 10, it became a "6". By this time, he was also a little itchy in his throat and the sensation of constriction was getting more and more pronounced. Finally, he coughed a little and the research staff called it off and gave him an antihistamine.

Unfortunately, the feeling of constriction in his throat continued to climb in intensity, despite the antihistamine. My son was starting to feel a little anxious, although nowhere near as anxious as during the initial fail back in April. However, they pulled out the Epi-Pen. In LESS THAN TWO MINUTES (no kidding!), he went from an "8" to a "2" with regard to throat constriction. Thank God for the wonder drug.

All in all, it was less stressful than the first challenge, even though he got a good bit further. While the clinical director said she couldn't tell me exactly how much peanut he consumed until we complete the next set of challenges in January, she did tell me that the total amount for the trial is 5000 mg of peanut flour, somewhere around 16-17 peanuts. My son completed all but the last dose, so that probably put him in the 4000 mg area.

That's almost eight times the amount of peanut he consumed in April.

13 peanuts.

Think about that. He achieved a better result than most of the oral tolerance trials...without any actual peanut consumption. Best of all, the medication has been reformulated so kids can hopefully achieve the same result without needing to take 30 pills each day.

So...here we are. What I thought might come to pass has come to pass, thanks to the hard work of a lot of good researchers and some really brave kids.

A therapy that mitigates the severity of food allergies has been discovered and tested.

I asked it back in May and I will ask it again now: How much risk are you willing to take? How much discomfort will you tolerate? Can your kid take 10 pills a day? 5 pills? Will you be willing to undergo a food challenge at the end of the therapy to see if it worked? Will you be the first to step up...or the last?

For us, the real excitement is all ahead. While it's very nice to have a larger buffer with regard to peanut, what we really want to know is whether our son can now tolerate more MILK. A tablespoon of peanut butter is great, but a tablespoon of milk would be even better. Unfortunately, we are still supposed to avoid all baked milk introduction or additional food challenges until the study completes in January. However, that's not long to wait to see if perhaps everything is better for him.

All his food allergies getting better — that's the real Holy Grail. Here's hoping I can clink chalices with you sometime next year when we confirm we're already there.

A heartfelt thank you to all the wonderful people at Lurie's Children's Hospital who made this both possible and easy. 

Friday, October 12, 2012

Halfway There...But The Second Half Is All Uphill

Yesterday was our first of two food allergy challenges for FAHF-2.

This is going to be a very quick update because the challenge was completely uneventful. My son had a full work-up in the morning, including cardiac, spirometry and many, many Vacutainer® tubes of blood. I asked if they could share anything about RAST levels, since we've had a blood draw every 6 weeks, but this info is apparently being consolidated at Mt. Sinai and will only be shared after the study completes.

After the work-up, he started on the applesauce. (If you haven't read about the FAHF-2 clinical trial before, here's a link that describes the process in excruciating detail.) By Dose 6 or 7, we were all chatting, reading, working...it was obvious nothing was going to be happening. Placebo.

Early on in the morning, I had asked our study manager what type of results they had seen to date. She said that, of the three kids who had completed the second set of challenges, two were able to achieve a four-fold increase in tolerance. (The third probably had placebo, since it's a 2-to-1 ratio of real medication to placebo in the study.)

She also confirmed that I was close on my estimation of the peanut my son had tolerated at the last set of challenges  490 mg in all, about 1-1/2 to 1-3/4 peanuts. I asked if that was typical for the study and she said he actually reacted sooner than most of the kids  for many of the kids, it took slightly more to set off the reaction. However, my son was a "slow reactor" according to the clinicians, so the time between his doses was increased to half an hour during the first challenges to help ensure he didn't suddenly reach a critical point and have a really bad reaction. Two of the other kids did have bad reactions and her theory was that it may have been related to the dose hitting them all at once.

Here's the bad news: my son's skin tests are actually more reactive now than they were when we started the trial. Does this matter? The trial director shrugged it off, saying that skin tests are notoriously unreliable to start with. However, it made us nervous. Over the last month or so, my son has also noticed a reduced tolerance to "may contain" milk foods that he had previously been eating (with doctor approval) without problem.

Did the medicine actually reduce his tolerance? Has he spent 6 months and taken 4600 pills, only to discover it's actually worsened his allergies?

It's also possible the medicine needs more time to kick in. (And, if we want to be irrationally hopeful, it's possible the applesauce he had yesterday was not placebo and that he's cured. Sure.)

I guess we'll know more after next week. Even if you disagree with me, please think good thoughts for him. He's just a kid and a very courageous one.

Sunday, September 16, 2012

The Internet Cult of the Special Needs Mommy

This weekend, I did what I periodically do (and I suggest you do as well): I Googled my name and home town and did my best to clean up public links that included them. It's amazing how quickly things like comments at newspapers can snowball and it's never a good idea for a future employer to think one's entire life consists of funny "Caption This!" contests.

However, in the course of deleting innocuous comments, I ran across one that stopped me cold. Several years back, I had written into Time magazine in response to a (very slanted) article they ran about food allergies and they published my response. The comment itself is long gone from the Time site. However, my name, hometown and a single line from the comment were now part of a support site for moms of diabetic children.

The original comment was, I thought, innocuous. It was about how food allergies are not thought of as a real disease, and how schools protect, for example, diabetic children but don't always extend the same protections for food-allergic children. But man, did the fur fly! You can read it if you like. (But PLEASE don't stir the pot...she'll probably put my name back in just to be spiteful!)

After several emails, the original poster did finally remove my name. I explained (nicely) that I have a sister with Type 1 diabetes and that I was in NO way dissing the severity of the disease. My comparison was made solely regarding the social status of the disease, not the severity.

She did not care at all. In fact, she doubled down in her response, telling me that my experience with my sister was not the same as having a child with the disease. I was clueless and her public raking of me over coals was totally justified.

All of this is like looking through a wormhole. As I mentioned before, I ran a board like that for several years, and yes, people outside the "culture" were regularly taken to the woodshed and trashed. I tried hard to stay about the fray and give people the benefit of the doubt, but I do recall one famous incident where I named and shamed someone (a public figure, but still). Now that Karma was biting my butt, the pain was, well, painful.

I quit running that community for a number of reasons. It's an amazing amount of work, day to day. (My children complained that I loved the chat board more than them.) But, more important, opinions on a chat board always seem to devolve to the most strident and the most conservative. Eventually, people with moderate opinions give up and drop out and the really out-there thought is continually reinforced. I decided that, despite the good of sharing information, the bad (and it was very bad) was actually creating anxiety in people and perhaps even mental illness. I was doing more harm than good.

This blog was born of that realization. I wanted to see if education makes a difference. If I pointed out all these overly-anxious thought patterns, would people see the patterns and want to change? Would they use my own experience as a cautionary tale?

I think it's been a failure.

Yes, a few people have pursued new testing or food challenges as a result of what I post here. And, a few of those have found out their child either no longer has or never had an allergy. That's a huge win, and one of which I'm very proud.

But, for most people, there's just no way to take my experience and transplant it into the consciousness of someone else. As with so many things in life, I think you just have to live it in order to get it. I'm sad that there's apparently no short-cutting the years of anxiety and crazy precautions for most moms...but I've concluded that information not only doesn't help, it often is just more polarizing. The more I talk about anxiety, the more these moms double down on their precautions. I've watched it on chat board after chat board where this blog is discussed.


We need to feel special when our children are young and dealing with food allergies is hard. We need the blue ribbon. We get it from these communities, even if it's at the expense of insular thinking and rampant anxiety (and sometimes dissing others). We're willing to get pulled further and further and further in. It's not ever obvious that gravity has us in its grip until it's too late.

People don't like to be told about this. (It has not escaped my notice that dryer lint has had about the same success building traffic than I have with this blog.) I've become a scold, and who wants to be scolded?

I don't know if I'm totally done, but I definitely need a break. I know a lot of you are interested in FAHF-2, so I'll try to post about that as we go through the challenges in October.

Peace.

Tuesday, September 11, 2012

What Does It Mean To Be A Good Food Allergy Mother?

As part of the college application process, parents are asked to write a summary of their child's strengths, weaknesses and issues that may have affected their high school performance. The summary is then used by the child's guidance counselor to write a letter of recommendation (one the parent never sees) to the colleges to which the child is applying.

I found myself writing at length about my son's food allergies, including the following:
Other people really don't understand the effect food allergies have on kids, socially and anxiety-wise. My son has had four major reactions that involved breathing difficulties and rescue meds; he's had countless other reactions that did not progress as far, but that made him sick. Coping with the fear of a reaction and learning to make good decisions, cook his own food, and watch out for potential issues (like kissing someone who has eaten peanut butter) has been a major undertaking.

There was more before and after that paragraph: about the clinical trial, about exclusion, anxiety, expectations, maturity. There was a lot. I wrote and wrote and wrote.

And then I took it all back out.

It occurred to me that the high school counselor would likely interpret it, no matter how well written, as overprotectivenessWhat exactly is overprotectiveness? I wondered as I looked at the blinking cursor. Would I know if I had the dread disease? Or, is it like racism, where everyone can only see it in others but either don't see it or excuse it in themselves?

And, more important, if my definition and the high school counselor's definition of "appropriately protective" vs. "overprotective" are different, who wins? Clearly, in this situation, what she thinks matters a whole lot more than what I think. I had already had past conversations with this counselor. It was clear that no amount of education was going to change her opinion.Yet her letter will carry enormous weight with these schools.

There is, of course, another way to look at the situation. I could include reams and reams of information about food allergies. I could let my anxiety all hang out. I could emphasize what my son missed out on throughout his school years. I could magnify the bullying incidents. I could complain about the uncaring teaching and support staff. I could rally against a society that teases and marginalizes kids with a medical disorder. I could name the dead kids...quote the test scores...talk about death from food allergy as likely or even certain.

I could be full-out Helicopter Mom in the hopes that the counselor opened her letter to the colleges with:

"In my 20 years of experience as a high school guidance counselor, I have never met a more anxious, over-involved and domineering mother than this student's mother. I am recommending strongly that you accept him at your college as a means of extracting him from this obviously unhealthy home environment."


But that would be incredibly self-centered and stupid. (Wouldn't it?)

So, I am starting the survey over, with the following Rules For Good Mothers of Food-Allergic Children displayed prominently over my monitor:

  1. I will not make it all about me. It's about him. If I get gratification from thinking of and portraying myself as a Food Allergy Wondermom who deals with more than other moms, I need to STOMP IT OUT. This is his normal. It needs to be my normal as well. There is no blue ribbon for food allergy mothering. 

  2. I will focus on facts, not emotions. My heart is saying HE COULD DIE DIE DIE DON'T LET HIM OUT OF YOUR SIGHT! My head is saying that one child died at college last year from food allergies, out of approximately 100,000 freshmen with food allergies who attended college*. My son literally has a greater chance of dying from a lightning strike (83,000 to 1), presumably even less if we prepare well. 

  3. I will not exaggerate! It's so easy to slip into full-out hyperbole. And let's be honest...the more danger there is to our kids, the more justified we can feel about our helicoptering. If death is truly not a possibility, then the protective-vs.-overprotective equation changes dramatically. (That's why so many chat boards emphasize, over and over again, food allergy deaths: because it's the only meaningful excuse for bad parenting behaviors.)
     
  4. I will restrict only what I must restrict for these last months before he leaves. I will not confuse more restrictions with more love or care. Avoiding foods, social situations and opportunities because of my own fear is wrong, and really bad parenting. I will deal with my own anxieties so my child can participate in every activity that is not demonstrably dangerous for him.

Such a little list. Such a hard thing to really put in practice. It's amazing how much of my own personal identity (friends, chat boards, activities, this blog) is derived from my son's health issue.

But that's what college is supposed to be about, isn't it? Stepping back and letting the child take control. If I'm honest with myself, I can see that I've made it a lot harder than it had to be, both for me and for him. And isn't that the real definition of a Helicopter Mother?

Guilty as charged.

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*6,000,000 kids with allergies in the U.S. divided by 18 years = 3333,333. 50% college attendance rate ~150,000. I reduced some because kids with allergies skew younger.

Thursday, September 6, 2012

Have You Met My Friend: Constant Agitation?

This morning was a pretty typical morning in our household: the kids 20 minutes behind and me sucked into the Siren's call of Facebook when I should be packing lunches. So, the last 5 minutes was a flurry of my son and I both shoving things into a bag.

I grab a dark chocolate Kit Kat (thank you, Peanut Free Planet and Nestle) and shove it in. A moment later, he yanks it back out and mumbles something. I hear "mmrmmmrmmrBLEmme itchy mmrmmr."

"What?" My hand stills as I'm shoving "may contain milk" pretzel crisps into another bag.

"I said that you need to stop packing those in my lunch. They make me itchy. Same with the Junior Mints. There's too much soy in them."

I'm holding the pretzels he's asked for, thinking, what about these? New item we've been trying, have packed it in his lunch before... I go for lecture mode in self-defense.

"You do remember these are 'may contain', right?" I ask.

"Yeah, I remember," he says. What does that mean? Have they been making him itchy too?

"You know you have to be careful with this stuff, because you can get a much bigger dose of milk if they come off the line right after they switch over flavors..."

"I KNOW, Mom," he says, and he's out the door, obviously done with the conversation. I'm left with a very bad taste in my mouth.

Over the last year, we've been playing milk roulette. When my son passed the baked milk challenge a year ago, his doctor told us she thought he could probably tolerate "may contain" foods and that we could start introducing them.

About three years back, we had another formative experience: my son had a reaction to soy. I had done the shopping (always a problem - my husband is the one who has the best handle on brands) and bought an "ice cream" brand that was available in both coconut and soy options, unbeknownst to me. My son ate an entire bowl of the soy stuff before he started to react. The reaction involved wheezing and we did end up in the hospital, but the doctor concluded that his threshold was very high for soy and that we could probably start introducing foods where the soy was listed as one of the last ingredients. Frankly, remembering his childhood reactions to soy, we haven't had the courage to do much of this...other than Junior Mints, with their "soy albumin" as the last ingredient.

At the moment in the kitchen when I stopped like a rabbit, ears up, listening after the itchy, I realized how fragile was my house of cards. What was I doing? How did I get from "try a little" to putting both "may contain" pretzels and dessert in the same lunch? At school! And how long had my kid not been reporting his symptoms?

I want these allergies over. I want them over so much that I can taste it. And now, sitting in the house with the silence all around me, I have to acknowledge that I may have been willfully ignoring those small clues, like my son only eating one stick of the Kit Kat at a time despite loving them.

And yet...there's no way through but through. He almost always had oral symptoms during baked milk dosing, which the doctor told us to push through. Is the itchy mouth from raw milk or micro amounts of soy in the same category?

It's too late. All it took was one comment to pull the whole mental card house down. Who knowingly sends something in their kid's lunch that could kill him?

But what if this is the only way for him to outgrow? What if NOT doing this will result in him going away to college with a threshold that's less than it would have been if we kept pushing through?

Is the FAHF-2 just not working? Oh God - is it placebo after all these pills and months? Or do the oral symptoms simply not matter because the changes are in the gut, not in the mast cells in the mouth? Have I  and his doctor  been mistaking slow-building reactions for tolerance?

Does anyone know anything? 

I don't.


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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?

Protein

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 thought...it'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 summer...no 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 travel...school...life. Some days you gotta just keep walking and not worry so much about where the trail leads.


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Friday, July 27, 2012

All I Know About Food Allergies, I Learned From Baseball


1. There's No Crying In Baseball! No wishing for a life without food allergies. No thinking about how easy vacations would be, or how limited restaurant choices are. No looking at the neighbor's horrible brat and wishing you could transfer the allergy to him. No pity parties, period. Every kid gets something, and you can't always see what they're dealing with. Just play the game.

2. Cover Your Own Territory. Yes, I'm sure I'm a great shortstop...and left fielder...and even pitcher. But I have my own game to play at my own position. I cannot save the rest of the team. (Repeat it to yourself, FAB - you cannot save the rest of the team! Stay off those unmoderated chat boards!) I cannot change how they play their game. A "you go, girl!" or a positive, very respectful tip once the inning is over is all I can do. When I start telling other players they're doing it wrong, or there's only one way to do it, it's probably time to take a time out.

3. Keep Your Eye On The Ball. It's not about food additives, or vaccines or GMO. It's about food allergies. We need to avoid the foods we need to avoid. On the other hand, I need to commit to giving him every last food he can have, even if it makes me uncomfortable. Even if he used to be allergic and outgrew it (especially this -- keeping foods in the diet may be protective).

The day I start controlling through food is the day I start losing the game. It takes all my energy just to be a good food allergy player.

4. Give Up On Not Getting Dirty. I want everyone to like me! I don't want to slide into 2nd . But...let's face it. The other mothers in this game want their kids to win too. I need to come ready to play, focused on my own team.

It doesn't do any good to vilify the other team. It just sucks away my energy and focus. They don't care, or even know, that I'm wasting time hating on them. Let it go and save the energy for what happens on the field.

On the other hand, competition gets the juices flowing. Right? (And if your cleats are up...she probably deserved it.)

5. Games Are Won Because Skills Are Solid. It takes time to master a skill. It takes comprehensive accurate instruction, followed by years of practice.

First, I need to understanding the theory. That means learning and finding a good coach. Just as we don't learn baseball from only listening to the other kids in the dugout, we don't learn food allergies by only listening to the other mothers who may know less than we do.

Then, we need to practice, practice, practice. Malcolm Gladwell theorized that it takes 10,000 hours of practice to master a discipline. It's going to take 10,000 outings (and probably 5000 reminders) before my kid always takes his meds with him. It's going to take 10,000 meals to feel comfortable with ingredients and substitutions. I need to cut myself a break if I'm not in the Major Leagues after my first year. Everybody's a rookie at some point.

6. Respect the Ump. Umps are human. Doctors are human. They do the best they can with the information in front of their eyes. They have the best interest of the players in mind. Question the plays, not the man. (Or woman.)

Asking for one change of ump in a league might be understandable. But, when you're complaining about umps over and over, you gotta ask where the problem really lies.


7. When It's Your Turn At Bat, Give It All You Got. There are a lot of bad pitches. You do have to have a good eye to avoid NAET, and hazelwood necklaces and special, magic blood tests. But, when the right treatment comes along, swing for the fences. Don't let the fear of getting hit by the ball stop you.

Lots of people get hit by the ball. It's part of the game. A reaction during a food challenge is not the end of the world. The coaches and umps will throw you an ice pack and the game will go on.

If you never step up to the plate, you're definitely never going to get on base.

8. Call The Ball. Does it feel like you're catching everything that's even remotely in your territory and the guy standing next to you is asleep? WAKE HIM UP! There's nothing wrong with saying "that one's yours!" as long as there's enough time for him to prepare for it. If you don't call them, how is he ever going to know?

By the same measure, if it's in your space, a clear "I got it" is never a bad idea. Yes, it saves duplicate effort...but it also reminds the team of your value.

Seriously. I've been seeing a lot of "food allergy divorce" type searches creep up lately in my blog stats. Call the ball. 

9. Celebrate The Victories. Nobody wins every game. Some teams simply have an advantage. Winning is really not what the game is about. It really is only about doing the best you can do. 

Don't forget to celebrate together. You don't have to have an outright win to celebrate. Celebrate learning to run. Learning to just stand at the plate as the ball whizzes by your head. Learning to hold your mitt solid against the ground, even when the ball goes between your legs. If you are getting better every day, you're doing o.k.


10. Remember...It's Supposed To Be A Game. When you look back on these Glory Days, what will you remember?

Will you remember how hard it was? All the tears? The games you missed out on because you didn't have the right equipment or uniforms? The other players who taunted you and then beat your pants off?

Or will you remember the sunlight in the field? The glance between fielders and the trust that the other guy would catch the ball? That great feeling when the littlest kid on the team finally smacked it for a base hit?

This is the game. Get out there and play — and have fun!

Summer doesn't last forever.


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Tuesday, July 24, 2012

Walking the Street of Imaginary Grief

I really don't want to write about Aurora. But...I also haven't been able to write or think about anything else since the shooting. It cuts a little close to home for me, literally, as I lived about five blocks from both the killer's apartment and the movie theater after I graduated from college. I've thought about why that even matters to me, 25 years later, and the answer is simple: all tragedies are about me

It's human nature to personalize it all. We see ourselves in the shoes of the victim (and maybe even a little in the shoes of the killer, based on the amount of speculation about why he would do this). It's just a little easier in this case for me to put myself in those shoes because I actually walked those streets.

My guess, though, is that you ALL are putting yourselves in those shoes, way more, perhaps, than other mothers are right now. And, again, the reason is simple   you've walked those streets. Not the streets of Denver around the med center, but the streets in your mind of having a child suddenly, senselessly, taken from you.

Does it do any good to walk those streets? Does it somehow keep our children safer to envision them dead? Do we try harder as a result, perhaps, to keep them safe? The answer, of course, is no. And yet, we all walk down foggy Whatif Avenue way too much.

My mother is a clinical psychologist, so I have a built-in go-to resource for this type of thing. She says the trick is to recognize when the negative thinking is occurring and then to re-frame it to a more positive thought. In other words, when you find yourself daydreaming about your child dying from an allergy, STOP the thought and substitute whatever works for you:
  • I've taken every precaution and trained him well, so the likelihood of him dying is extremely small
  • Most children do not die from anaphylaxis, even in situations when it's left untreated
  • Only a handful of kids die each year, and the vast majority of them did not have epinephrine with them
Or, simply, "my child will not die." 

No parent wants to think about death. But thinking about it all the time is like a little death, again and again. It doesn't make us more prepared, should the worst occur. It just makes us afraid, and therefore less able to cope in an emergency.

We're surrounded by negative stories. Negative stories build web site traffic. But there's a huge irony in living in a world that is the safest it's ever been, with technology like an Epi-Pen that can save lives, yet being more afraid than past generations. Our movies are filled with shootings and deadly viruses and global warming catastrophes. Our fiction (especially our children's fiction) is increasingly dystopic.

I don't know what motivated this man to kill so many, but I do know the line between fiction and reality was awfully blurry for him. It's not realistic to only watch re-runs of The Waltons...but maybe a little less Contagion and 24-hour news would help.

It's these little things, they can pull you under 
Live your life filled with joy and thunder 
Yeah, yeah, we were altogether 
Lost in our little lives 

All of us will have cause to grieve at some point in our lives, so in that respect, we are the same as the Aurora families. However, there will be time enough for grieving when the day comes. We know we're especially vulnerable, so that's all the more reason to protect ourselves emotionally.


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Wednesday, July 18, 2012

Food Allergy Vigilantism

I recently joined Twitter. I was disturbed the other day to see a whole series of posts targeting a local bakery that apparently had a "nut free" sign, yet served cookies with M&Ms.

I'm not saying restaurants should declare themselves nut-free if they're not. However, in this particular case, the Tweeter targeting the restaurant had not even spoken with the owners. She had emailed them once without response and decided to take her case to the Twitterverse and blogworld. Hey, she might have saved a kid from a reaction, so no harm done, right? Except to the restaurant's reputation...the same restaurant that was trying to accommodate us (even if doing it badly).

Another incident from this week. one of the boards (don't remember which) posted a picture of the new Smarties candy label. Instead of just the regular ingredients statement, there's also now a statement on the bag about what the candy does NOT contain.

Half a dozen moms immediately piled on with comments like "I would never feed my child all those artificial colors!" Sort of misses the point.

So maybe I'm oversensitive. I think we've established by now that I'm a slacker mom when it comes to this stuff. Before my son was born, I embraced formula, harsh cleaning products, non-organic foods, Big Agra and just about anything else killing our planet and the life on it. I was blissfully unaware.

But still. Are food manufacturers really the enemy? Especially the ones who are actually trying?

Over the years, there have been a couple of food producers who have really been hung out to dry by our community. The two that immediately come to mind for me are Subway and McDonalds. A brief recap for those of you who are new to FA...

In 2006, Emily Vonder Meulen had a fatal food-allergy reaction after eating at a local Subway. The cause of the reaction was never determined. It may have been cross-contamination from the peanut-butter cookies; Emily's parents have since theorized that it may also have been a suddenly-apparent cross reaction to the soy in the chicken sandwich (the sandwich had no known peanut ingredients).

Today, Subway is one of the best, most allergy-aware restaurants my son eats at. The cookies and bread are baked on different pans. Every line worker will change gloves if asked. Yet, I am still seeing posts from parents with no awareness of the original incident who have heard "from the friend of the nephew of my neighbor's postman" that Subway is bad for food-allergic people.

McDonald's, the second company that's gotten hammered, at least brought the situation on themselves. Before the 2004 Food Allergy Labeling Consumer Protection Act (FALPCA), consumers such as my family were left guessing or calling about natural flavorings in foods. After the passage of the act, manufacturers were required to disclose food flavorings and additives derived from the Top 8. (Hallelujah!)

However, we were shocked to find McDonald's suddenly disclosing the milk origin of the flavoring in their French fries. To add insult to injury, the en vogue theory at the time was that total avoidance was the best way to outgrow a food allergy. Was it possible that us giving our son McDonald's fries all those years had made his allergy persistent, even though he showed no reaction?

We fired off an angry letter. McDonald's responded that, although the flavoring started with hydrolized milk protein, by the time they were done with it they were confident the flavoring no longer contained enough protein to cause a food allergy reaction. We thought it through, shrugged, and continued giving the fries.

So, you see, we're slackers again. I just don't have that pristine approach to food allergies, or foods in general. I won't give my son foods with a "may contain" peanut label. But, in the case of McDonald's, their people swear the food DOESN'T contain the protein, despite the ingredients statement. It's akin to labeling anything with soybean oil as "soy", even though the vast majority of people with soy allergy can tolerate the amount of soy protein left in oil.

Like Subway, McDonald's is one of the companies we really trust for food awareness. I was not happy that they did not disclose ingredients, but the bottom line was that they were right  even my very-sensitive-at-the-time son could tolerate the fries.

There are a lot of sloppy manufacturers out there, food companies that really don't dedicate themselves to the food-allergic community. I just wish we would stop vilifying the companies who truly do make the effort.

Yes, Smarties contain crap. But that doesn't bother me, as long as they don't contain peanuts.


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