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Showing posts from February, 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:

Exclusion Accommodation Inclusion Parents provide all special treats and are pres…

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 g…

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 b…

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 …

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…

"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 place…

"Hello Muddah" - Food Allergies Version

I think this one "speaks" for itself without a great deal of explanation. Enjoy!

Hello, Muddah Video



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!…

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…

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 anaphylaxisChanged the …

"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:

EMERGENCY TREATS 101*

If you have only 5 minutes:

FRUIT TARTS
Clearbrook Farms tart fillings
Keebler Ready Crust mini graham cracker shells

Fill and go!

MINT "GIRL SCOUT" TYPE COOKIES

Town…

"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 s…

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 locations...college 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 bord…

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 …

"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 yet...it 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. …