Wednesday, February 29, 2012

Exclusion, Accommodation, Inclusion: Three Choices For Every School

There's an excellent video out right now that demonstrates all the many places our children are left out in school:

My son has been in so many of these situations, particularly the one where there's nothing safe to eat at the classroom party and the teacher says "well gosh, guess you might as well go off to the library." 

When my son was little, allergies were fairly new to the school scene and my husband and I were afraid to ask for too much from our schools. We didn't really even know what to ask for. We certainly didn't understand that schools are mandated to include children in the "least restrictive environment." 

After 12 years in the public school system, I've learned a great deal. Unfortunately, it's too late for my own child. However, I thought the following matrix might give you parents of younger child something to think about and discuss with your schools:

Parents provide all special treats and are present at activities they deem problematic (resulting in lost time from work/extra expense); student sent out in the hall or to the library when there’s unsafe food in the classroom
Provided with “safe” area and own food (“treat box”)
No foods used in the classroom that are not safe for student, including holiday parties, math teaching aids, language/culture days, etc.; special classroom party fund is collected and used to purchase all treats; trained school staff member is available for field trips or other high-risk activities
Eats lunch in own area, separate from other children
Eats at an allergen-free table
Allergic child eats wherever he/she wants; children who bring peanut-containing foods sit at a specific peanut table
Cannot participate in after-school activities involving food (pancake breakfasts, sports events with concessions, ice cream socials, etc.)
School ensures there is at least one allergen-free option for the child at each event
School social events are food-free
Burden of educating staff members about allergies falls to parent and/or no education occurs
School passively disseminates information/allergy “sheet” on a limited basis, such as a classroom binder or only to the health staff
School actively trains all individuals throughout the district, including transportation staff and school volunteers
Brings lunch from home; no accommodation for forgotten lunch; school food service takes no responsibility for allergic reactions
School food service periodically provides ingredient lists to students who request it
Food service trained in cross-contamination; documented procedure with multiple check-points for allergic student lunch; identified substitute lunch available that is allergen-free

I'm sure there are many more examples we could add to this table. But it does demonstrate an important point: we need to do more than complain about how our children are treated. We also need to demonstrate what it is that we want from schools. What does inclusion really look like?

When I was a jr. high school student, I received an important lesson in inclusion. Our school had a deaf student attending. The student had an aide who would translate all lessons and spoken interactions into sign language. 

Our school administrator could have looked at the situation and said "Great - I'm done." The child was accommodated and included, at least on the surface. However, my guess is that the administrator really looked at the situation and realized that 7th grade children were very unlikely to interact with the deaf child because of the presence of the adult interpreter. He felt compassion for this isolated child. He wanted inclusion, not just accommodation. 

The result was that every single child in that school was required to take a course in sign language. It was included in one of the elective blocks for the year. As a result, ALL of us were at least able to sign "hello" and a few key phrases to the deaf child and we delighted in showing him our new-found skills. 

I don't know if there were parents banging on the door, demanding that their children learn more useful skills. I don't know if teachers complained that the administrator was disrupting their set schedules. But I do know that child felt more included. I still remember his shy smile every time I signed "hello." 

It's ironic that our schools are investing in programs like "Character Counts" to develop core ethical values when they have an opportunity right in front of them with food-allergic kids. It just takes a commitment to truly include our kids...and a little creative thinking.

Tuesday, February 28, 2012

Food Allergies: An Indecent Proposal

When the stresses of dealing with food allergies were particularly bad, usually right after (or sometimes during) a hospital trip, my husband and I used to play a warped little game called "What Would You Pay?".

The rules are simple: name a figure you would be willing to pay to make food allergies go away with the snap of a finger. You can't just say "a million dollars" because you don't have a million dollars. (If you really do have a million dollars at your fingertips, perhaps this blog would be more to your liking?) You have to really think about what not having food allergies in your life would be worth to you.

The first five minutes of the game usually involved us calculating all the things we already pay for because of the allergies. $1000 a year (easily!) for special groceries, chocolate, treats. Say $500 for medications. Another $1000 for doctors and hospital bills in a bad year. $500 a year to provide treats for as many of the class parties, soccer games and birthdays I could weasel my way in to so he wasn't left out.

Then we think about the money we didn't earn because of food allergies. When our son was little, we managed a job share -- 55 hours between the two of us at one company. But, this didn't last and eventually he stayed home while I worked. Let's say $400,000 (10 years at $40k).

Then there are the things we bought to make life easier. The kitchen appliances and camping gear for travel. The van to haul all the crazy stuff around with us. Kitchen-Aide for making bread. Food dehydrator. Popsicle molds. I would guestimate a $20,000 premium over the last 10 years just for this kind of stuff.

So now the game has shifted to what DID we pay and the answer is ~$471,000 over the last 17 years. Only half a million.

Then there's the cost of NOT saving the money from my husband's nonexistent job. We're now looking at funding our son's college education with loans because the choices we made to have a stay-at-home parent resulted in no college fund. Even if you discount the principle, let's figure $60k in interest that he/we are likely to pay over the next 20 years that we wouldn't be paying if the money were already saved.

When we start taking into account what we would be willing to give up in order for our child to be just like the other kids, things start to really get fun. Eating out. All Starbucks coffee forever. Magazines. Gifts. Hosting parties. New clothes - can buy used. Phones. Of course, many of these things have essentially already gone by the wayside, but would we give them up forever? In a heartbeat. Could we come up with $28k a year in savings or second jobs? Not easily, but we could if we really had the promise of a cure. $28k x 17 years = $476,000. Plus the college loan interest - $536,000.

Guess what? We really would pay a million dollars.

Wouldn't you?

Sunday, February 26, 2012

Baked Milk Dosing, Domino's Pizza and Fenugreek

I have some nice news to report for once: my son ate his first Domino's Pizza last night.

As I've mentioned before, my son passed a baked milk challenge last summer. Even though he ate a milk CUSTARD during the challenge, we've had a lot of trouble getting our heads around what's required to dose him with baked milk each day. To complicate things, he seems to be able to tolerate baked milk in most foods, but baked cheese definitely still causes a reaction.

After we learned that some things will still cause a reaction (although all have been relatively minor), we lost our enthusiasm. Since we need to be prepared for reactions at any time, we have to only dose after school and far enough away from bedtime that we can account for biphasic reactions. That means his milk has to be done as soon as he gets home from school, while my husband is still at work. The hospital is 45 minutes during rush hour.

After we were scolded by the doctor for not keeping up with this, we've been trying to figure out how to ramp up our tolerance for anxiety along with his tolerance for milk. The daily dose has become Pepperidge Farm cinnamon bread. It has so little milk in it that he's had no trouble at all.

A few weeks ago, I discovered that Domino's actually offers both a pizza crust (thin) and sauce (plain) that are milk free! A year ago, we would have never considered this because of all the cross-contamination issues. However...with baked milk cleared, we gave it a shot. I'm happy to report he had no problems, although my son did comment "your homemade pizza is SO much better." Score one for mommy! But...having a delivery pizza option is one more important step toward independence at college.

Is it always risk free? Well, no...because if someone contaminates it with raw cheese and the dose is enough, he could still have a reaction. The hope is, though, that the baked milk dosage will some day also raise his tolerance to raw milk, so the small cross-reactions don't occur any more. Time will tell.

One other important note I wanted to make (and will just tack on to this column since it's a catch-all) is about fenugreek. Over the last several years, I've noticed a trend in food allergy deaths that occur in Britain: adults who clearly knew they had a peanut allergy and were generally very careful about it. The thing these deaths had in common? Carry-out curry.

Cross-reactivity between fenugreek, a spice used quite often in Indian dishes, and peanut is something that has only recently been studied and not well communicated. I'm afraid people are dying because they are unfamiliar with the high level of cross-reactivity between this herb and peanut. Make sure you know the ingredients in your curry spices! 

Friday, February 24, 2012

Why Cupcakes Trump Children

I recently read a Facebook vent from a woman who had her first run-in with a Cupcake Queen. For those of you who are unfamiliar:
Cupcake Queen (noun) \kəp-kāk kwēn\: a wife or widow whose royal offspring require constant feeding throughout the school day with sugar-based treats created ONLY in the royal kitchen. When confronted with the possible removal of said snacks, Cupcake Queens have been known to spew vitriol, sabotage social relationships and even target the non-royal offspring of others.
Some Cupcake Queens are immediately obvious and march right over to the superintendent's office to complain the day they receive the "your child has a child in their class with allergies" letter. Others are more subtle and only show their true colors when it's class party time:

Allergic child's mother: "I'd really like Susie to be able to participate in the class party this year."

Cupcake Queen: "Yes, we all totally agree. So I'll make the cupcakes and Susie's Mom, you can do the decorations."

ACM: "If you make the cupcakes, Susie won't be able to eat them. What if I make them, or we purchase the cupcakes from a safe source?"

CQ: "Well,we could do that..."

Any of you with older children know how this ends up. The Cupcake Queen brings the cupcakes no matter what you say. The teacher hands them out because she doesn't want to deal with a bully. Susie watches everyone else eat the delicious cupcake while she chews on her fruit snacks and hides in the corner, not wanting to make a fuss, not wanting the other kids to see she's upset. Not understanding why it isn't her party too.

What in the world is going through the Cupcake Queen's head when she sees that little girl, on the verge of tears, watching everyone else eat those cupcakes? What warped values system allows her to marginalize another child just so her child can have the treat? Many years of watching these Cupcake Queens in their own habitat have allowed me to draw some conclusions:

  • The cupcake isn't just a cupcake. For some CQs, the cupcake represents "full out mother love". A purchased cupcake, or one that came from the hands of another mother, just doesn't jive with the idealized childhood school experience the CQ either did or did not have, and now wants (WANTS!) for her child. Cupcakes are also one of the few opportunities some moms who stay home have to show off their mothering skills in a public forum.
  • Control...who has it, who doesn't. Cupcake Queens are control freaks and usually Queen Bees. Controlling classroom treats is really about controlling other people.
  • Competition. It isn't that the Cupcake Queen doesn't see your child, but she puts the needs of her own children first. She knows that in life, some kids end up "winners" and some "losers" and your kid is likely already a loser, so why invest time? 
  • Lack of empathy. Some Cupcake Queens really just don't see the tears as any big deal. "It's the real world - she's going to just have to learn to suck it up" is the type of statement you'll often hear from them.

Ironically, Cupcake Queens occasionally have children with food allergies. These are the parents who are willing to bulldoze through the school to fight for their child's -- and only their child's -- rights. These parents don't do the rest of us any favors, as administrators can get burned out by unreasonable demands to the point that they won't make any accommodations without a huge battle.

America's focus on individualism ensures that there will be at least one narcissistic mother in your child's classroom. Sometimes common sense and altruism from other moms will save the day, but odds are there will come a time when you have to decide whether to fight the CQ, back down and let your child experience exclusion, or try to get the school administration to either make or enforce rules about food in classrooms. (See my earlier post about lip service.)

Unfortunately, there is no winning strategy. Schools do not want to get involved and have fought hard to categorize food allergies as a non-504-eligible disability. Recent lawsuits in the area have been mixed. That means your school is likely to go with the path of least resistance, which results in administration basically ignoring what goes on in the classrooms with regard to food and parties.

Taking on Cupcake Queens successfully depends on your social savvy and support group. As a working mom with limited social ties in the schools, I never won these battles, but I have heard (from the friend of a friend's cousin's friend) of supportive communities where children are included and bullies vanquished.

Or, there's the route we ended up taking: having one parent quit a job and always be there with an alternate treat. This is clearly not something every family can afford financially and it only works up until about 5th grade, after which the child is mortified by "being different" and would prefer to just slink down in his chair, hoping that the other kids don't notice he's not eating.

They do get used to it. It does make them stronger. As a result of their experiences, our children generally are more empathetic than the children of the Cupcake Queens. But it's tough to look ahead to that outcome when your child comes home miserable and withdrawn yet again.

When my son was a fourth-grader, my mother had HAD ENOUGH of the cupcake queens. She heard my stories about how the class party was going to be filled with treats my son could not have, so she showed up with a homemade three-tier cake.

It was amazing - a work of art. It had pillars and squigglies and more candy than the witch's house in Hansel & Gretel. She brought it into the classroom and said "Grandson, this is for YOU." The implication that it was for him alone was clear. The other mothers bristled.

And just as the silence and tension peaked, a little girl next to my son said "can I please have a piece?"

And my son said "yes, of course, EVERYONE can try my cake!"

Everyone. What a concept. Damn cupcakes.

Tuesday, February 21, 2012

The Politics of Food Allergy Deaths

Last week I started a post about a topic near and dear to my heart: whether the fact that any kid can die from a food allergy is really the same as whether every kid can die from a food allergy.

Back in 2008, there was some excellent research about the interaction between two molecules in the immune system. Usually, the body signals these molecules to stop when the triggering antigen has been vanquished, but in certain individuals, the rogue molecules simply don't hear the command to stop, causing the reaction to spiral out of control.

Before I go on, let me note that, since 2008, I have heard nothing about this research. That may very well be because it didn't pan out and the genetic issue that causes this out-of-control spiral may not be the whole story with anaphylaxis. We know that food allergy responses can change and that there are other factors that can cause a reaction to spiral, including:
  • Hormones. Sadly, Googling food-allergy deaths will lead you to a list of the names of 13-, 14- and 15-year-old girls who fall into this category.  There seems to be an area of particular sensitivity just as girls experience the hormone shift associated with adolescence.  Our allergist once made a curious observation: boys tend to grow out of allergies, while girls tend to grow into them.
  • Untreated asthma.  Asthma results in a chronic narrowing of lung bronchi. Because wheezing doesn't occur until the bronchi are narrowed enough, episodes of wheezing are often only triggered by viruses or food-allergy reactions. Sadly, parents interpret these infrequent episodes to mean that their child's asthma is not serious and doesn't require medication. When a full-out reaction hits, areas that are already narrowed and scarred can quickly shut down, resulting in death.
  • Young adult immune systems. As with influenza, young adults seem to be most at risk of a "cytokine storm" that can create the out-of-control spiral that can result in shock and death. 
But...what if this genetic clue does have meaning? Or, what if there's a future marker uncovered at some time in the future?

How would your life change if a test could tell you whether your child was likely to die from a food allergy?

The reason that it's taken me four days to get back to this topic is that the above question is particularly loaded right now. Over the last several years, there has been a concerted effort by a few individuals to discount the severity of food allergies: in particular, Dr. Nicholas Christakis from Harvard: This Allergy Hysteria Is Just Nuts, and Meredith Broussard: Everyone's Gone Nuts: The Exaggerated Threat of Food Allergies. Both of these individuals posit that there just aren't as many food allergy deaths happening as people think there are, so therefore the precautions we ask for our children are overblown and a waste of time. It's become such an issue that FAAN recently issued a statement.

FAAN is right: whether one or 100 children die each year from food allergies, there are too many deaths and we should be doing everything we can to protect vulnerable children. We may never be able to tease out who is most at risk. Until we can, all food-allergy reactions have to be regarded as potentially fatal.

At the same time, it's important for the food allergy community to examine the risk realistically. This is very difficult to do officially/statistically because, as FAAN points out, food allergy deaths are often coded as something completely different: asthma, shock, cardiac arrest. However, the food allergy community does a very good job of anecdotally reporting out on deaths that are caused, or that may have been caused, by a food allergy.  While there are a handful of cases each year, there is no evidence of a huge increase in reported deaths, despite the documented rise in ER visits.

This should be good news. It may very well mean that not every individual has the potential for fatal anaphylaxis (or at least not without other mitigating factors like those mentioned above).

What would/will food allergy advocacy be like without the weight of potential death hanging over our heads? Here's hoping we all have the chance to find out.

Wednesday, February 15, 2012

"Total Avoidance": The Best Chance to Outgrow a Food Allergy?

I think there's a myth that's done a lot of damage to our community: Total Avoidance.

If you've been in this rodeo for any amount of time, you probably know what I'm talking about. You see statements all over the web that say "total avoidance of an allergen gives the best chance for a child to outgrow." The theory seems to be that the body somehow needs a rest from the allergen to "forget and reset."

I haven't been able to find the direct source of this myth, other than the statement that has been AAAAI policy for years: "there is no current treatment for food allergy: the disease can only be managed by allergen avoidance." (If anyone has a source, I'd love to see it.)

When my son was young, we didn't practice Total Avoidance. We read the ingredients and gave him food based on those ingredients, end of story. We even used to cut the (milk-containing) breading off chicken nuggets in restaurants, and take him out for sorbet at places where we just asked them to rinse the scooper. He seemed to have a fairly-high threshold to most of his allergies. Yes, he got stomach-aches or a tingling mouth or "that feeling" in his throat on occasion...but it wasn't anything major, so we did it.

After the incidences I'd described in other posts (food allergy reactionidiopathic anaphylaxis) we hunkered down and got educated. We read books. We found on-line communities and off-line support groups. We learned the Gospel: total avoidance was necessary, not just to avoid reactions but in the hopes of outgrowing.

It's easy for me to look back now and see that there was little evidence for this, but 12 years ago things were not so clear. Plus, this belief fed right into what I WANTED to believe. I was scared - terrified after his new allergies developed - and I wanted some control over things. Total Avoidance was a "truth" that felt emotionally right to me. It gave me control over something that felt completely out of control.

We quickly learned that Kosher symbols could be used to determine whether foods were produced on a milk line. It didn't matter if the foods contained milk, or if the line no longer even ran milk (as is the case with Oreos)...we avoided anything with a UD. And really - if we were going to control for milk, why not other allergens? We started making the calls. Calls to hundreds of manufacturers over the years, resulted in crazy direction about foods that were produced in the Ohio factory on Tuesdays when the moon was full, but in Indiana on Fridays when it wasn't.

There is no end to the slippery slope of avoidance. There was always a public surface that might be contaminated, or a child who had just eaten peanuts 10 feet away, or a swimming pool. Were we going to limit social opportunities to avoid even further? How could we not if it meant he could finally outgrow these allergies?

Around this time, I started immersing myself in the research. Before I was going to go whole-hog with this thing, I wanted to know what the scientific basis for all this avoiding actually was. Instead, what I found was Outgrowing Milk Allergy May Take Some Babies Longer Than Expected.

Hmm...provocative. It could be that the allergens themselves have changed, making these traditionally toddler-only allergies more persistent. It could be that the process of becoming allergic was different, resulting in a more persistent allergy. It could be that the length of milk/egg allergy had never been well measured, so the perception that they were outgrown in toddler-hood was simply wrong. could be that parents were doing something different, changing the environmental factors, keeping their children away from those small exposures that led to outgrowing allergies.
This last one haunted me. I had worked hard at avoidance and felt smug in my judgement of those "lax" parents who just took the cheese off the pizza, or cut the breading off the chicken fingers, or gave their kids the foods they could tolerate and dealt with reactions if they happened.

A few years later, tolerance studies began. People who, for years, had bad-mouthed the SLIT studies were suddenly questioning their assumptions. As a result of the tolerance studies, researchers broadened their attention to milk and egg allergies. Lo and behold, 80% of kids with persistent milk allergies (ages 2-17) could tolerate baked milk.

80%. There were no predictive criteria for who would fail. It didn't matter how old the kid was. It didn't matter how big their wheal was to raw milk (my son's entire arm swelled - he still passed). It didn't matter how severe past reactions were, or what type of symptoms were experienced, or how high RAST scores were. Wow.

As I've commented before, my immersion in the group-think badly prepared me for the fun of introducing baked milk. There ARE symptoms. Just as there were when my child was a toddler and we used to cut the breading off his chicken nuggets. Only now, we're far more anxious about those symptoms because of our Total Avoidance conditioning. And, I know there's a whole generation of food-allergy-dogma-immersed parents and children behind me who are going to find working through these allergies with baked foods very painful.

Would I do it differently, knowing what I know now? It's tough to even consider that. But yes - I was a lot more carefree in my child's early years and it makes me angry that my investment in Total Avoidance was probably a waste, and possibly even detrimental.

Don't misunderstand me. I would still not give my child food with a "may contain peanut" label since we know a good percentage of those foods DO contain peanut. But...I wonder if I had to go as far as I did down that slippery slope. And I wonder a great deal if his milk allergy needed to be handled with the same extreme degree of avoidance as his peanut allergy.

After the debacle of food-allergy advice from doctors (avoid nuts during pregnancy, avoid introducing potential allergens to siblings, etc.), I know doctors are hesitant to take a position on this since they cannot be certain. Plus, they don't want the liability should a child have a serious reaction as a result of the "laxness" of parents. BUT...I do not think doctors should exempt themselves from the MENTAL health of the families they counsel. Not taking a stand IS taking a stand.

I hesitated to write this column because I do not want a parent new to food allergies thinking this is medical advice. IT'S NOT. You need to ask your doctor where he/she stands on this issue and decide for yourself.

I'm just here to bitch about it.

Monday, February 13, 2012

Critique of a Food Allergy Reaction Response

Looking back over the reactions my son has had, there is one we still refer to as The Incident. It was not the most dangerous reaction, but it was traumatic for all of us and became the turning point in how we prepared for them and treated them. (There's both good and bad in that...but that's a post for another day.)

When my son was about 5 or 6, he asked for "milk" and cereal for breakfast. My husband gave him MILK and cereal. At the time it happened, my husband was ill and not thinking clearly. We also have a daughter with no known food allergies, so at that point there was always cow's milk in the fridge.

The next thing I know, I'm in the bathroom, holding my son's head as he's vomiting everywhere. I can see the panic in his eyes and the swelling starting on his tongue. I rushed upstairs, stood over the bed where my sick husband lie and said "WHAT DID YOU DO???!!!"

"Oh my God," he immediately said. "I gave him MILK. Real MILK!"

I rushed back to my son, who was on the bathroom floor now with his back against the wall. It was obvious this reaction was not going to go away with Benedryl. It didn't matter at that point anyway; he was vomiting much too much to keep any antihistamine down. I did try the Benedryl anyway; he immediately vomited it. Now I didn't know what to do next - if he kept some of it down, I didn't want to double dose him. But what if he hadn't?

"I think we should use the Epi-Pen," I whispered to my husband.

"No, no, NO," howled my son from the floor. He had obviously overheard and was terrified of the shot.

"But honey, it will make you feel better," I told him cheerfully. "NO! NO!" was the response. My husband was unsure as to whether this reaction warranted it, but he went and got the pen from the kitchen. "Do you really think he needs this?" he said to me, again in a too-audible whisper.

"I DON'T NEED IT - DON'T GIVE ME A SHOT" came back to us from the floor.

"You're going to have to hold him down," I said. However, my son had been forewarned about what was going to occur and he was a writhing, squirming mass of 40-lb boy. It took quite a bit of pressure to ensure his leg was still enough. At that point, I froze. Was I doing the right thing? He was so tiny...would the needle hit bone? What if I... "JUST DO IT," I heard my husband growl. "IT'S REALLY HARD TO HOLD HIM LIKE THIS." With that, I took off the cap (old model) and jabbed it. The force of the needle startled me and I almost jerked it back in surprise, but luckily I kept it in.

"No, NO, NO," my son was still sobbing. "Honey, we're all done," I said. He didn't even know I had given the shot.

"It didn't even hurt," he said in wonderment, his tears suspended.

Even with the shot, the vomiting continued and it got to the point where he was coughing and choking on the mucus coming up. Plus, we had given an Epi-Pen, so it was off to the ER. We live very close to a hospital so we jumped in the car and went.

As soon as we got there, the nurse saw what was going on and handed us a bucket. We sat in the chairs for a few minutes while they checked in other patients. Finally, seeing that this was going to take a bit, I walked over to the desk and said "he's having a food allergy reaction." Immediately, things changed. (She had assumed when we came in that he had flu, as it was flu season.) We were ushered into an exam room and we had a doctor with us immediately.

They looked down his throat for swelling, asked general questions about what had happened, the allergen, how certain we were about exposure, and what past reactions had been like. They slid his finger into a pulse oximeter to measure his oxygen level but the machine wasn't working, so the doctor just listened to his chest and counted his breathing. The doctor explained that the vomiting would probably be best helped by an antihistamine and that he really didn't need another epinephrine shot. However, he was vomiting too profusely still to keep it down, so they'd have to put an IV in.

20 minutes later, we were still waiting for the IV. The ER was so slammed that we were on a gurney in the hallway. The ER had no pediatric IV sets, so they had to call down to central supply to see if they did. In the meantime, the nurse had tried twice with the smallest adult set; neither worked. My son was back to screaming. The Epi-Pen was nothing compared to the botched IV.

Finally, a peds set arrived and they got him set up. The nurse hung an IV drip and said "I'll be back to check on you in 20 minutes." I did my best to comfort my son, who was still pretty shaken up and not happy about the pain in his hand from the IV needle.

We sat. We SAT. Another nurse came by and switched out the empty antihistamine drip for a saline drip. Another hour went by. The first nurse came back, saw the saline, and started to hang another antihistamine bag. "You already gave him one of those," I asked. "We also gave him antihistamine at home. Is he really supposed to get another?"

"Oh, you're right," the nurse said. "We're just so busy here today, I was thinking he hadn't had this yet." Yikes.

Eventually, they let us go home, with instructions to continue to dose with Benedryl every 6 hours.

My son said very little about the incident. Of course, he was pretty drugged up from all the Benedryl and slept round the clock. I hovered over his bed, counting the breaths and occasionally grabbing his wrist to make sure his heartbeat was strong. My husband had to stop me from actually shaking him awake a couple of times just to make sure he was o.k. Paranoia is a tough companion.

Over the weeks, I noticed something. My son loved his blocks and toys and would set up whole worlds of imagination. One day, I passed by and heard him say "and then the man went to the HOSPITAL and got a big SHOT. It hurt a LOT but he was O.K."

Wow. It had been almost a month at this point and he was still thinking about it. I realized that not talking about it to help him forget wasn't working so well. "Are you remembering when you went to the hospital?" I asked him. No response. I realized he wasn't going to be able to talk about this, so I just laid down on the floor and picked up a toy.

"I'm going to give you a SHOT!" I said, moving toward his toy.

"No, no NO," he said and moved his toy away while giggling.

We spent a great play session re-enacting all the things that had happened, but using the toys to distance us from the actual event. And, of course, everything worked out. I emphasized several times that the shot "probably didn't hurt that much, even though Play Guy here is dreading it."

"That's true," he said solemnly.

Eventually, things returned to normal. We did have to give an Epi-Pen a couple of years later. He was a tad apprehensive, but older, with the memory of one under his belt already, and there was no struggle. By the third time we did it, he was ASKING for it with no fear. Now he knows the pen hurts very little, less even than a vaccination, and the relief from many of the symptoms takes less than a minute. He thinks it's funny that he ever dreaded the shot itself, although he still dreads the observation time in the hospital.

So...for those of you who have not been through this, let me dissect what we did wrong in the hopes that you will do better, should you ever need to:

  • We didn't label the milk. We assumed that milk was milk and that it didn't need a "NOT FOR BOO" sticker. It did. That doesn't mean accidents can't still happen but we made this one too easy.
  • Sick parent = no child care. My husband shouldn't have tried to be a hero. 
  • We dithered over whether/why it was a reaction. This is a tough one. When your kid starts vomiting, especially if they're little, it can be difficult to tell whether they're really having a reaction, especially if they don't get hives (which is common as they get older). There comes a point, though, where you have to look at the symptoms and make a guess, even if you don't have all the answers. We have had a couple of food-allergy reactions that we never traced to any allergen we could find. Plus, I left him alone while I ran upstairs - not ideal.

  • We argued in front of our child about how to treat it. The reaction and the after effects were a lot more traumatic because our son sensed we didn't know what we were going to do. If we had quietly agreed to give the pen and distracted him while we did it, things would have gone so much smoother. If you have fears about giving a shot in general, work them out before you get to the crisis point. Practice with an expired pen on an orange so you know what the release mechanism is like - the trainer and the actual pen are completely different. (Don't forget - count to 10 before you release the pen.)

    You're going to panic. That's why you need that food allergy action plan that you develop with your doctor. At the point we saw swelling in his tongue and vomiting, we should have gotten out our sheet, saw that two body systems were involved and not had that argument about whether to give the pen.
  • We probably shouldn't have driven to the hospital. Really - if we couldn't give an Epi without arguing and shaking, how safe was it for us to drive a car? Just call 911 already. 
  • When we got to the ER, we didn't aggressively tell them it was a food allergy. Don't sit politely in the chairs and wait your turn. 
  • We didn't check out the hospital in advance. We did not consider that the closest hospital to us was not certified for pediatrics. (That has since changed -- I did report the experience to the ER director afterward, so perhaps it made a difference.) 
  • We didn't pack a bag in advance. The doctors will want to keep you at the hospital long after your child feels fine and wants to go home. Entertaining a first-grader while sitting on a gurney in the hallway for 4-6 hours is not an easy task! Make sure you have a book with you. Even drinks and a snack are appropriate if there's time, because once epinephrine and antihistamine are given, your child will probably feel a LOT better, maybe even completely better. 
Now here are a couple of things we did right:
  • We spoke up when something didn't seem right. It was horrifying to me that the hospital could be so busy that my son could be double-dosed with a medicine, but mistakes happen all the time. 
  • We realize our child needed to process the experience in an age-appropriate way. That almost always will mean something other than talking to you about it. Play works great for little ones; toddlers may regress and need a lot of TLC; older children may need to talk it out with their friends and emphasize the "coolness" of their hospital bracelet or IV bandage. Just be sensitive and give your child every opportunity.
  • We emphasized the positives afterward. My husband and I made up a little routine after this incident. "Remember how scared you were about how much that shot would hurt, and how you didn't even notice when we gave it to you?" we would say. The positive reinforcement helped him a great deal the next time the needle came out. We also emphasized that, while it was scary, we knew how to treat him and the doctors knew how to treat him, so everything was o.k.
Most of all...give yourself time to breath afterward.

When I started this blog, I thought about calling it "Food Allergy Veteran." But...I realized something that I know in spades after every reaction: no one is ever a veteran of this stuff. All it takes is a reaction to completely shatter your equilibrium and return you to questioning every one of your preparations and responses. We've gone a couple years at this point without a major reactions. I hope I won't have to write about the next one...but I probably will. That's the nature of the beast. 

Saturday, February 11, 2012

Stalking Your Food-Allergic Teenager

O.k., so I just did something I'm not at all proud of...I stalked my kid.

My son announced cheerfully a couple of hours ago "I'm going to meet my friends for lunch - can I take your car?"

"Sure," I replied. "Where are you going?"

"Panera," was the response.

Crap, I thought to myself. Panera is one of the places we avoid like the plague. In addition to serving peanut-containing dishes, virtually everything there contains milk. He's never eaten there. However, I don't want him to restrict his social activities because his friends choose to meet at a restaurant he can't eat at.

He can tell I'm uncomfortable. "I'll just get a salad," he says.

"Wait, wait!" I say as he's grabbing my keys. "Make sure you talk to the manager! They don't post ingredients on their web site so you HAVE to talk to the manager! And take your medicine bag! And your phone!"

...and he's out the door. He's heard it all before.

As the minutes tick by, I'm getting more and more uncomfortable. Was I firm enough about the talking to the manager thing? Will he really do it? Is the risk from cross-contamination just too great, regardless of whether he does everything right? Am I a bad parent for trying to give him this freedom to prove he knows what he's doing?

Next thing I know, I'm in the car. After all, I have to eat lunch too, right? And there's nothing that says I can't slink in, spot his table and avoid being seen, right?

I go in. I order. I spot him at a far table, next to the drink machine. Crap! It's going to be hard to get a drink without him seeing me, but he seemed engrossed in the conversation, so if I pull my hood up, I should be fine. I pay. I turn toward the drinks.

OMGOMGOMGOMGOMGOMGOMG! He's sitting with a GIRL! A GIRL! Oh man, this is a thousand times worse than I thought it was going to be. If he caught me stalking him when he was with just his friends, he'd be mad but it wouldn't be that big a deal. But this? YIKES!!!!

I walk sideways like a crab toward the drinks. Yes, I could have just skipped the drink, but I am a true iced tea addict. Plus, he's oblivious. I know I can do it. I get my drink and, even though I could reach out and touch him, the huge coat and weird walk does the trick.

I take my meal to an entirely different part of the restaurant, slump down and consider what to do next. I can't really sit here and be seen...I can't check up on him directly. What about a text message?

Crap. My cell phone is in my car...the one he drove.

I wolf down my meal, run out to the parking lot, find his (my) car. My phone is right there. Oh man, so is his medicine bag.  Now what?

I return to my car, move it out of the visual path of the car he drove and text him. RU o.k.? Did they have something u could eat?

No response. I wait 10 minutes and try again. I don't want to bug u but I just want 2 make sure yr ok. Txt me back pls! Nothing.

I call my husband. "You are NOT going to believe this!" I tell him. "He's in there with a girl, he left his medicine bag in the car and he's not answering his phone. I bet he doesn't even HAVE his phone." I'm pretty mad at what I see as risky behavior. "I can't talk to him because he'd DIE if I embarrass him in front of the girl."

"Just calm down," my lovely husband says. "You don't really know what's going on. His phone isn't here so he probably has it with him. Just take it a step at a time."

So...I move the car yet again, adjust the rear view mirror so I can see the door, slump down and take out a book to distract myself. Time passes. He hasn't come out. Wait - where's his car? GONE! I MISSED HIM!

I call home. His sister answers. "Is your brother home?"

"Yeah, he just got home, do you want to talk to him?"

"No, thanks, I'll see you in a little bit." I'm sure she thinks I'm nuts, but she's used to it by now.

I get home and he's there. Everything is fine. "So," I say nonchalantly, "what did you eat?"

"I had a plain salad, just lettuce, cucumber, tomato and balsalmic."

"And did you ask the manager?" I say, thinking I knew the answer.

"Yeah, I did," he replies. "He was really nice. He showed me the label for the salad dressing and told me they'd be careful with my salad.

"Really," I say, impressed. But then I remember the medicine bag. "You didn't leave your medicine bag in the car, did you?" I asked, thinking I knew the answer.

"Well, yeah, I did," he says, "but I took the Epi-Pen out and put it in my coat pocket."

"Oh," I say, thinking that I'm a stalker and a jerk at this point. "Well, that's great." But then I remember the phone.

"Did you get my text message?" I ask.

"What? No...did you send me one?" he replied. He actually goes and gets his phone and shows me - no text message. Apparently my crappy pay-as-you-go phone service delayed sending it for some reason.

Kid = 3   Parent = 0

He did everything right. Perfect, in fact. My husband later told me that he said the girl was a friend's girlfriend. Apparently, in my shock, I missed the friend who was also there, sitting at the next table over. It must have been about the time I started crab walking.

Someone once told me that having a child is like taking your heart and letting it walk outside your body. That's true...but my heart also spends a lot of time in my mouth.

When does the letting go start getting easier?

Thursday, February 9, 2012

Food Allergy Deaths At School: The 10 Commandments

A child dying from a food allergy at school. It's every parent's nightmare, and every school administrator's job to prevent. Then why is it always so difficult to get our schools to take the steps that would keep our children safer?

There are a handful of schools who have a heartbreaking, but incredibly valuable, perspective to share: those that have already had a death happen on their watch.

These schools have had time to consider what they did right and what they did wrong. They have had to process the emotional and legal turmoil that followed each event. And, each of them has had to find a way to continue to educate students: but with a much broader and realistic view of what is truly needed to keep a food-allergic child safe.

Nine-year-old Nathan Walters died while on a field trip after eating a peanut butter cookie provided in his (supposedly safe) school lunch. After his death, the school took the following actions:
  • Instituted staff training about anaphylaxis
  • Changed the field trip lunch order form to ensure allergies are highlighted and double checks are in place
  • Eliminated some peanut-containing foods from their menu entirely 
  • Created a district-wide task force to examine what went wrong
The school district's  resulting food allergy guidelines are now a model for schools worldwide.

13-year-old Sabrina Shannon died after eating school-made French fries contaminated by a utensil that had also been used to serve cheese-containing food. As one of the outcomes from this tragedy, Canada now has Sabrina's Law. What does the law require?
  • Schools have to develop "reasonable procedures", including keeping foods out of classrooms and eating in designated areas only
  • School personnel receive mandatory training on handling anaphylaxis
  • Anyone who gives treatment or epinephrine is covered by a "Good Samaritan" clause, meaning as long as their approach was reasonable, they are protected 
A beautifully-simple statement from the brochure sums up the approach: "While recognizing the parents’ rights to food choices for their child, most parents acknowledge the right to life and safety as greater, and will support procedures which protect the allergic child."

13-year-old Katelyn Carlson died after she ate the Chinese food her teacher ordered in for a holiday party. As a result, the Chicago Public School system implemented a system-wide policy:
  • Each school must stock Epi-Pens, regardless of known allergies 
  • Administration and teachers are permitted to administer a shot to any student in need
A simple policy change like that could have been lifesaving for 7-year-old Ammaria Johnson, who died earlier this year.

Let's sum up The 10 Commandments of Food Allergies these schools have learned and implemented:
  1. Create a district-wide task force to discuss, implement and review plans and procedures.
  2. Ensure the plan includes training teachers and administrators in how to recognize and treat anaphylaxis.
  3. Simplify forms used to order meals for allergic students and create multiple-checkpoint food service procedures to catch errors.
  4. Eliminate peanut-containing foods from universal menus, particularly where foods can be "look-alike" (e.g., cookies).
  5. Keep food out of classrooms.
  6. Confine eating to designated areas that can be decontaminated after use and require students to wash hands after eating.
  7. Ensure emergency caregivers are covered by a "Good Samaritan" provision so they will not hesitate to offer assistance.
  8. Have an Epi-Pen available at all times, regardless of known allergies in the student population.
  9. Administer a shot to any child in need, regardless of known allergy status.
  10. When faced with parental or staff opposition, promote the principle that the right to life and safety for the allergic child takes precedence
Has your school implemented these 10 Commandments?    If not, ask them WHY. Remember: these are not YOUR suggestions on how to handle food allergies. These are rules established by the schools themselves that have already experienced a food allergy-related death. 

There is absolutely no acceptable reason to refuse to learn from — and act upon — their bitterly-earned experience. 

Wednesday, February 8, 2012

"I Need A Safe Treat RIGHT NOW!"

In my last post, "Your lips are moving", I talked about how unresponsive my son's schools were. That was over 10 years ago. However, the feedback I've received about the post tells me that, unfortunately, things haven't changed much.

So...I thought it might be helpful for the newbies out there to have a few options in your back pocket for the days when the teacher calls and says "I'm so sorry, but Johnnie brought birthday cupcakes without telling me in advance and the kids have already seen them so I'm going to have to hand them out. Can you run by with something for YOUR child?"

Yes, it sucks that the options are pony up an instant treat...or have our kids left out...but sometimes that's the best we can get out of the world, and for those times I present:


If you have only 5 minutes:

Clearbrook Farms tart fillings
Keebler Ready Crust mini graham cracker shells

Fill and go!


Town House crackers (or any safe buttery-type cracker)
1 cup powdered sugar
A few drops mint flavoring
Safe chocolate chips (Enjoy Life, Whole Foods 365, whatever you use)

Add mint flavoring and enough water to the sugar to make a thick, but spreadable icing. Melt chocolate in the microwave and either spread or drizzle over the top of the crackers. These taste just like mint Girl Scout cookies! Really! Plus, they will harden in the car as you're driving to the school.


No instructions needed...just reminding you that kids are very happy with a chocolate-dipped pretzel rod, particularly if you roll it in cake sprinkles.


This is really easy and surprisingly good! I know the Rich Whip is hard to find, but it's worth the effort.

1 carton Rich's Rich Whip 

Whip until creamy, about 5 minutes, If it's frozen, you can microwave it to get it to thaw and it will still whip.

Add while whipping:

1 Tbsp. instant (decaf) coffee, reconstituted with hot water
1/4 cup safe chocolate syrup

Crush and mix in:

Lorna Doone cookies  (we always use the 100 calorie packs - check the larger sizes to make sure they're safe)
Candied cherries (if you like)

Fill muffin cups with the mixture. Yes, there is not much real food in there, but occasionally in an emergency, it's not the worst thing in the world. Or at least that's what I tell myself.

If you have 10 or more minutes:


1 cup sugar
1 cup corn syrup
1 1/2 cups Sunbutter (stir before adding)

Bring this to a boil over the stove, or as hot as you can get it in the time you have. When it's hot/boiling, remove from heat and add 5 cups cereal (Product 19 works well but you can use just about any corn- or rice-based cereal).

"Butter" a 9 x 13 pan and spread mixture. Sprinkle safe chocolate chips across the top. Place pan next to you on the passenger-side seat and spread melting chips with a spoon at stop lights.


This is awesome! My kids ask me to make this all the time.

One sleeve of Oreos (about 20 cookies, I think)
6 Tbsps. safe margarine
1/3 cup sugar

Crush the cookies in a plastic bag. Melt margarine in the microwave in a glass pie pan. Add sugar and cookies and stir. Once mixed, press around the sides of the pie pan. Don't worry about the cookie filling - it just make it better!

Heat a pint-size safe tub of ice cream substitute for 20 seconds. Dump onto crust and spread. (Again, if it's not melted enough, this part can be done at stoplights.) Sprinkle with chocolate chips, chocolate sauce, mini marshmallows...basically the more bling, the better.

For the veterans: what are your go-to emergency (and I use the word loosely) recipes?

*Obviously I can't cover every allergen. These are tailored to my son's major allergens: milk, soy, peanuts, tree nuts (we do not avoid soy oil/lecithin). Most also don't contain egg. CHECK EVERY LABEL!

Tuesday, February 7, 2012

"Your lips are moving, but all I hear is blah blah BLAH"

Lip service.

Is there anything that drives you crazier when it comes to food allergies?

When my son started school, we heard all the right phrases from school personnel: "safety", "we want him to be totally included", "staff training", "comprehensive plan." My husband and I felt pretty good about things. Until school started, that is.

Within a few weeks, my son came home and reported that his teacher had handed him M&Ms for a math counting exercise. When he said "I can't have these" she said "oh, do they contain milk?" Training blah blah blah

First grade: the start of full days and school birthday parties. Would the parties include brought-from-home foods, we asked? Well, yes, we really can't take away a treat from the other children blah blah blah

We noticed there was a "no nuts" sign on the door of the classroom. Apparently the signs were part of the "comprehensive plan." We pointed out that our son was allergic to more than just nuts. That the sign had no meaning if they were allowing foods in the room without checking ingredients. It's more about general awareness blah blah BLAH

The parties escalated. Every kid's birthday, culture days, peanut-butter bird feeder projects, school ice cream socials, pancake breakfasts, food fundraisers, pizza reward lunches. "What happened to total inclusion," we asked. "How can he really be safe with all this food around him all the time? Bring treats to store in the nurse's freezer and come to the school if you must, but we think we have it under control blah blah BLAH

"But you DON'T have it under control!" we said. "You've just been LUCKY!" There have been several instances where only our child's knowledge or our involvement prevented reactions!" My husband finally quit his job and ran full-time interference at the school.

Lip service.

You see it when you ask the waitress "does this soup have milk in it?" and she answers "definitely not" without even checking in the kitchen.

You see it when you try to show a friend how to use an auto injector and she replies "you don't need to show me - I can figure it out."

You see it when you go to the family party, ask about a dish and your relative says "yeah, we checked it all" and then shouts over her shoulder "you checked all this stuff, Bob, right?" Right. Lip service.

When my son was a toddler, I was given a rare gift, although I didn't know it was a gift at the time. We were at my brother-in-law's house and my son accidentally drank from his cousin's milk-filled sippy cup. The response was instantaneous. Hive. Swelling. Copious vomiting. My brother- and sister-in-law watched this unfold right in front of them, mouths ajar, as my husband and I struggled with the Benedryl. (I know, I know, don't lecture me please about two-system involvement and Epi-Pens...we were clueless back then.)

After that day, my husband's side of the family has NEVER given lip service to my son's food allergies. My sister-in-law committed that day to understanding the situation and safely cooking for him. She saves every label she uses. She walks through every dish with us. She thinks about potential cross-contamination on her pans. She plans her menus with him in mind. She takes it in stride when she makes a mistake.

THANK YOU, Sylvia. From the bottom of my heart.

Because that's where meaningful words come from - the heart. Not just the lips.

Monday, February 6, 2012

Dreaming of the End of Food Allergies

We all dream about life without food allergies. What makes it especially hard for me is that I've heard now for 17 years that "a cure is just five years away." (Now I didn't do well in high school math, but even I know the numbers don't add up there.)

When I get really bummed out, I think about what it would actually be like if the wish came true and my son outgrew all his food allergies:
  • He could travel anywhere. No thoughts about whether there's a good enough hospital, close enough, with the right equipment. No concerns about finding appropriate foods. Cruises...rural camping... exotic semester abroad...backpacking through Europe: all on the completely-manageable list of possibilities.
  • He could eat in any restaurant. No more only four restaurants in his future! There would be no calls to the manager before he went, asking about the kitchen in general and their comfort level with cross-contamination. There would be no conversations that border on confrontation in order to ensure that everyone who touches his food really knows what's going on. We would no longer discard whole worlds of food (Chinese! Indian! Italian!) because of the risk. He wouldn't have to carry in his own bread and salad dressing. We wouldn't have to watch him like a hawk after eating. We wouldn't have to argue with food establishments about the legality of carrying our own food in. He could eat dessert
  • He could kiss a girl if he wanted. No worries about whether she had eaten peanut or put on lip gloss containing soy protein.  No wondering if the hands of the girl he's holding at the dance were just dipped in the buttered popcorn a few minutes before. No awkward questions and avoiding the whole situation because it's just too embarrassing. 
  • He could carelessly socialize with his friends. No going back for the medication bag (which looks like a purse no matter what we do). No negotiating which restaurant so he can eat something. No avoiding the school pancake breakfasts and language food days and United Nations weekend trips because they're so food-centric. 
  • He could get a part-time job without concern. So what if he had to handle peanut-butter cookies, or make coffee drinks with cream? Without food allergies, he doesn't have to worry any more if he touches his contaminated finger to his eye. Look ma, no reaction! 
  • He could have a reasonable amount of stress about leaving home. No thinking about how to find foods, store foods, cook foods. No missing out on communal dining and cookies sent by other kids' parents. No psychological weight of a possible reaction: anywhere he eats, everywhere he goes. No balance between telling people for safety's sake and boring/ annoying/ alienating people by talking about it. No convincing, cajoling, educating, avoiding. No need to question whether they believe, whether they would help, whether they might even harm. 
I know I'm whining. I remember my pediatrician tell me when he was little "just be grateful it isn't something really bad, like cystic fibrosis or diabetes." I understand that, I really do. My child is healthy. He's happy. He's reasonably well adjusted.

But I'm a MOM. I want what every mom wants: no limits for his future. No risks. 

Clearly I can't have that. But I can dream, can't I?

Friday, February 3, 2012

The Dark Side Of Exaggerating Food Allergies

DISCLAIMER: this is NOT medical advice. You should not EVER change how your approach your child's food allergy reactions as a result of anything you read on the internet. Talk to your doctor and develop a firm allergy response plan. (End of public service message.)

I have a mommy confession: I have exaggerated the severity of my child's food allergies.

When my son started kindergarten, we had the meeting that I'm sure many of you have been through with the school administrators to determine whether a 504 was needed. (We ended up with an IEP that was pretty much "you show up and run interference/bring a snack whenever it's required" - but that's a topic for a different post.)

We were asked to describe what happened when our child had a food allergy reaction. The answer to that question at the time was that it could vary a great deal. My son had experienced two "moderately severe" reactions (doctor's phrase) at that point, one of which resulted in us taking him to the hospital because he could not stop vomiting and was so congested with mucus that he was having trouble clearing it. However, he had never been given epinephrine. Never had trouble breathing (other than the mucus). Never had what doctors referred to as a "severe" episode (meaning resuscitation or intubation).

In addition, he had had several reactions that progressed no further than hives and/or vomiting. Did we tell the school that? Or did we keep it simple and emphasize the worst of all the reactions and say "potentially fatal" as many times as possible so they took us seriously?

I'm sure you know what we did. You probably did it too. No school in America is going to create an allergy plan for parents who are wishy-washy and say "gosh, my child will probably have what doctors call a moderately severe reaction most of the time." So, when they asked are your child's food allergies life threatening? I answered "yes."

It was right around this time I found a food-allergy community. As I mentioned in a previous post, the conservative groupthink of these communities can be overwhelming. I was taught the dogma:
  • All food allergies are potentially life threatening.
  • Allergies can change at any time, so past experience doesn't mean your kid won't die.
  • The biggest "word gun" gets the biggest response: "food allergy" is not as good as "anaphylaxis" is not as good as "life-threatening anaphylaxis". (There is even an acronym that's become en vogue: LTFA.)
These statements scared the crap out of me, especially after reading the stories of kids dead from food allergies. I found them start to creep into my conversation with other parents when I explained my son's food allergies. After all, they wouldn't take me seriously unless I did it.

Eventually, I had created a boogeyman in my mind. By repeating these statements over and over to others, my child's allergies became something completely fearful, unpredictable, catastrophic. It didn't matter that we had dealt with literally dozens of small reactions over the years, and even given an Epi-Pen four times. I felt helpless because my language and thinking about the reactions continually reinforced my powerlessness.

If you've been at this for a while, you've probably read the 2003 study that likened the stress from FA to that experienced by families with a diabetic child. However, you may not have seen a  2009 follow-up study was summarized in the AAAAI journal in the following way:

"The study results showed that on average, children with food allergy had the same or lower stress scores as kids who had no serious health problems. Mothers tended to report more anxiety and depressive symptoms for their children than the children themselves did. 
The study did, though, identify a subset of children who had increased distress scores. Children with negative attitudes about food allergy, and in older children those whose mothers had a higher level of anxiety, were associated with greater child anxiety." 

I can't help but think there's a connection here between the exaggeration we need to use to get results from schools, family and friends, and the internalization of that exaggeration that makes us think every food reaction is going to result in the immediate death of our child. 

I'm not saying we should hide the potential severity of these reactions. I'm saying that when we repeat and escalate the dogma, over and over, the anxiety becomes overwhelming. It's easy to end up with the equivalent of Mommy-Post-Traumatic-Stress-Disorder...but with the precipitating event being a figment of our imagination. 

The other thing to consider is that we're not doing our children any favors. This study (about the risks of driving - but also applicable to food allergies) talks about how teens approach risky behaviors. Its conclusion:

"...if it’s true that for some teens risk taking stems from feelings of doom rather than invulnerability, parents and educators might do better to focus on helping kids to formulate an optimistic and more long-term picture of their future, rather than waving news clippings of fatal car crashes."

How we model anxiety about food allergies for our children will have a definite impact on how they go through life. I don't want to be one of the overanxious mothers who passes my anxiety on to my child. I want to model a positive approach where allergies are to be respected, but where they are ultimately manageable

It's long past time that my thoughts and conversations with others about allergies start matching my goal.

Wednesday, February 1, 2012

"Did I Mention My Kid Has Food Allergies? I Did?"

I went to one of those "pyramid scheme" parties last week. You know what I'm talking about...the kind where you go to a friend's house and pay her friend (who just happens to sell XYZ Products) 4x more than you should for stuff you never wanted in the first place?

I felt pretty angry and resentful about attending this party. I've been to a ton of them in the past. Plus, I'm not working at the moment so money is pretty tight. But...I went and I bought something because that's what you do. Social obligation.

However, within minutes of crossing the threshold, I did something I hate, but that I seem to do every time: I uttered the words food allergy.

I don't know how it happens! I have an interesting life, I think. The sum total of my identity is not my oldest child's health issues. And seems my conversation always comes back around to it. This time, it started out innocuously: have to leave early, getting up early, college tour in the morning. Next thing I knew, my anxiety about dealing with food allergies and college came leaping out of my mouth.

The effect was immediate. Those who already knew about my "issue" edged away. Those who were in the immediate conversation group glazed over. That old saying about how people judge you within the first 30 seconds of meeting you?  With food allergies, it takes only a nanosecond before you're labeled that kind of mom.

O.k., so maybe some of this is a bit of an exaggeration, but it's easy to feel the socially-isolating effects of food allergy. Why does it happen to us and not the mom of the diabetic child? Food allergies have characteristics that you don't find with other illnesses:
  • They're invisible. There's no way to know whether a child truly has a food allergy unless you're unlucky enough to see a reaction unfold right in front of you. "Food Allergy Parent" and "Crazy, Controlling Hypochondriac Parent" look exactly the same from the outside.
  • They're scary. No one likes the idea of a child dropping dead at their house during a play date. Much easier just to avoid child and parent of child.
  • They're limiting for others. Kids with FA have to think about everything they eat and everywhere they go, and anyone who associates with them is pulled along. That's a real drag. 

I know all this, and I know better than to talk about it. Yet, it's a Catch-22. As the cook and cruise director in my family, the burden of my child's safety falls on my shoulders. There's a huge amount of stress associated with this and yet talking about that stress with others - the normal safety valve - is something that's verboden if I want to keep my friendships going.

I understand. It's scary and boring and ultimately it's not their problem. On the other hand, I just bought magic silver mops at your crazy party! Isn't that worth something in the currency of social obligation?

Just give me two minutes to get it out and then, I swear to God, I will self-regulate and we can go back to talking about Kim Kardashian.