AAEG meeting TONIGHT in Louisville area

May 10, 2007 at 9:51 am (social issues, support groups)

Reminder: The next Food AAEG meeting will be held at 7pm this Thursday May 10th in the Williamson Room at St. Francis in the Fields Episcopal Church…..

One of the topics for discussion will be how to best deal with some of the solicitations we receive in our new role as one of FAAN’s official support groups.

Looking forward to seeing everyone!
Brook

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To my blogger friends on blogspot.com

May 9, 2007 at 6:29 pm (Blog & Websites, Blogroll, cooking, food, labeling, legal, legislation, medical, social issues, Websites)

Allergic Girl, on Please Don’t Pass the Nuts:

Keep on keepin’ on.  We need truth in food preparation, even GMOs!!  I am so fired up about Frankenfoods right now.

Food Allergy Queen:

Your blog is awesome!

Sorry I am blogspot-challenged today.  I don’t know what the deal is, but google has it out for me, I think.  Giving me t-rubble!

To all who send me notes, comments, or who bump into me online: I am sorry for not being a better “reciprocal” blog reader and commentor.  I am outright swamped.

Today I took a few minutes and actually READ a few allergy blogs for the first time in months.  It was awesome.  I have missed it.  Being a full-time mom again is really all-consuming, what can I say?

I highly recommend the above two blogs!

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A note from Ria Sharon of Checkmytag.com, and note from me on what it’s like to be an allergymompreneur

May 9, 2007 at 5:58 pm (Allergy News!, Blog & Websites, Blogroll, Canada, Contributors to the Podcast, education, gear, kids, labeling, newspapers, peanut, Products, social issues, USA, Websites)

Most of our friends and family are amazingly thoughtful and ask, “Is this safe?” before they give our little guy anything to eat. A few just give me the box so I can check the label. But almost all will admit their discomfort with making the call themselves, partly because they are not sure what to look for when they are reading packaged food labels.

Next week is Food Allergy Week so we are making extra efforts to promote food safety for our food-allergic friends and loved ones. The Spring issue of our bulletin, Be Aware. Be Safe. is devoted to taking the mystery out of the new labeling laws. Please help us raise awareness and understanding of food allergies, by passing this .pdf along to your friends, co-workers, educators, and childcare providers.

Also, visit our Community page, http://www.checkmytag.com/community.html beginning May 20th to read personal accounts from the blogosphere on how food allergies have changed the daily lives of a growing number of families.

Thanks for helping to keep kids safe,

Ria

Ria is a very warm and helpful individual.  Please check out her site!  It is not just about “selling shirts” for her.

Someone recently accused me of only doing this blog to direct people to my allergyware.com site.  She didn’t say it accusingly, but rather matter-of-fact.  As if.  😦  Why do I make the shirts?  Why did I do it in the first place?  Because allergies are a “growth industry?”  Because I was looking to make a quick buck?  C’mon.  My kid could DIE if he eats a peanut.  There were no shirts at all out there for sale except from England, when he tested positive for peanut.  What would YOU do?

Honestly, it is issues like the above that I am using this hiatus to think over.  I don’t want anyone to think that it is my desire or motivation to profit from my son’s life-threatening allergy.  The fact is, I’m not a millionaire who can set up a fund to research the cure.  I do not have the time to volunteer a lot and do a lot of political stuff, plus I do not have the temperament for it.

What I am is a writer with a degree in accounting.  I am a business person by training and a story-teller by birth.

I write this blog and I sell tee-shirts because I buy the tees myself.  My kid also wears shirts by other allergymompreneurs.  He took his first field trip today with his medicine in a bag from allergykids.com (thanks, Robyn).

If you are so cynical that you think for the past five years I have enjoyed some kind of status as Allergy Tee Shirt Emperor, then you are forgetting the heartbreak and daily stress and agony that go along with safe-guarding a child who is too young to speak for himself.

Pushing six years old, he is finally getting closer to being able to speak up for himself to people about his allergy.  He still can’t read, give himself his epinephrine shot, or measure out his own Benadryl.  He is dependent on any adult in his vicinity to notice if he develops hives, has trouble breathing, his eyes swell up, etc.

So I made him shirts.  When he was recently fed a nut-containing brownie at school, I sent him to school the next day in an allergy shirt, in addition to talking to his teachers about what happened.  You know what?  Call me materialistic & opportunistic and any other “istic” that you want, but I FELT BETTER knowing his shirt said this in big letters:

cutelittlesamallergyshirt.jpg

(this was him four years ago, nearly exactly!)

This is him today, in a Nut Free Zone hoodie:

sam042607.jpg

I love this child.  He is not a model, a product spokesman, a clotheshorse, or a mannequin to hang shirts on.

HE IS MY CHILD.

If you think I’m doing this blog and doing my shirts for the money, or you wonder why I don’t do more: I am doing what I can, where I can, with what I can.

I love my children, all three of them, and I am doing my best.  This blog is filled with photos, links, articles, podcasts, recalls, news, you name it.  I am doing my best.  I doubt I will ever give up the blog, but for now I am not in the frame of mind to do videos or audio podcasts.  I probably will again.  I do not feel like I am “done,” you know?  But my time is sort of maxed out right now.

Now head on over to Ria’s site, or any of the awesome Allergy Mom (and Dad) sites listed in this blogroll.

Sorry for the tangent, but I think it deserves to be said: Allergy Moms who started Allergy businesses have their hearts in the right place. They should be commended, not distrusted!

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Playground bullying vs. teasing

April 28, 2007 at 10:51 am (Allergy News!, Blog & Websites, education, food, kids, nut-free, Products, safety, school, social issues)

There have been a lot of blog posts in the allergic community lately about kids bullying allergic classmates.

This calls to mind a post I left on a local message board over the weekend, about being teased. Here’s an excerpt:

being made fun of

 

Submitted by lmharmon on Thu Apr 26, 2007 10:09 pm

 

Take this for what it’s worth, but being made fun of can be so character-building. I’m not saying it’s something I’d seek out for my kids, but it’s not the end of the world.

I was at least a foot and a half taller than every second grader at my new school, the beginning of second grade. Add to the fact that I had (first) buckteeth and then (worse) a headgear. I was called Radar Head, and openly attacked physically by little boys on the playground that were intimidated by my size.

Amazingly, I quickly made friends and endured the teasing with no lasting damage. I only recently even remembered being called Radar Head. I do remember the teasing a neighbor boy got on the bus for taking up for me! They accused him of being my boyfriend! Rolling Eyes Embarassed Very Happy

Oh, did I mention my mother dressed me funny? Knee socks and tartan skirts and other very feminine clothing, for me, the total tomboy. It was a nightmare.

But I actually enjoyed school a lot, became one of the most popular kids in school, was a cheerleader, etc.

The whole time, I was taller than everyone, and went through not only the headgear, but a functional appliance, braces, etc.

…I think I was the living dictionary of “awkward stage” all through those precious years.

My point being, on this topic, that being teased is something that will happen to most kids (some of us more than others!), and I think we actually grow from the experience.

As the mother of a child with peanut allergy, I have been called “Peanut Lady” in a moment of insensitivity by an administrator at my son’s school. Again…an opportunity for growth on my part, and education for him. (He was immediately apologetic, but how revealing that slip was of his heart, at least at that moment.)

The reason I post this today is because I want to make something crystal clear: teasing is not the same as bullying. Bullying can employ teasing, but name-calling and rough-wrestling (which is probably outlawed now that kids aren’t typically free to skin their knees on the playground) are common parts of child development. Most kids will be on both sides of that experience at some point before they begin adolescence. They had better be!

Bullying takes teasing too far. Bullying takes the wrestling and makes it mean. It is a kid who is three times bigger, and old enough to know better, pushing another kid around. It is the little girl who knows that the special needs child in her school is mildly retarded, who still openly mocks and makes fun of the differently-abled child. Words and actions can be used mildly, or they can be abusive.

Bullying is abusive. Teasing really is not.

If my kid gets called Peanut Boy (not likely at his current school), then that’s teasing, right? But if someone holds a peanut butter and jelly sandwich over his head unawares, that’s not teasing. That’s dangerous. And then we’re getting into bullying issues.

Personally, I think life is too short for bullying amongst adults, but even that occurs. I have experienced it with food allergies, very often. People are sometimes openly resentful that we do not eat nut products (why they take this personally, I will never know), sometimes passive-aggressive about it, testing us and trying to get us to “slip” and eat something that might endanger our nursing child, or via contact, cause a reaction in Sam. Why do they do it?

I can only presume it is for the same reason the playground bully chases a classmate around with a handful of peanuts in his hand: it’s a short-term power trip without thought for the long-term ramifications on others.

sam042607.jpg

Sam models his Nut Free Zone hoodie.

iamloved.jpgcutelittlesamallergyshirt.jpg

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“Care” provider

April 25, 2007 at 7:03 am (kids, shots, social issues)

I am my child’s advocate. Responsible for teaching them, guiding them, loving them, nurturing them, disciplining them, and, yes, protecting them, I believe I have reasonable expectations from my children’s physician. I expect a physician and his staff to be kind, caring, patient, and helpful. That’s about all I expect.

Suffice it to say, we are in a situation where that trust has been violated. Not by a direct act of the Dr., but by the direct acts of one particular staff member. This staff member is so troubled, that since I alerted management about the situation, she has become even worse.

Their response to us was basically “so what?”

That’s…bad business, at best, bad medicine, definitely. But this woman’s response…? Pick up any psychology text book, turn to “sociopath,” and there you’ll have it.

I feel sorry for her, for the whole organization, which proudly posts a sort of Code of Ethics that they obviously don’t adhere to.

In that vein, the one time I have seen “my” allergist, he referred to me as What’s Her Face in conversation with a staff member in the hallway. I should have known then that patients aren’t people and don’t deserve respect, in this practice. But I forgave it. I actually didn’t realize he was talking about me.

I suppose the thing that really screams RED FLAG is that we expected to be treated with civility and respect by everyone in that office. We did not expect to be run down, either behind our backs or in front of our faces. The woman mentioned previously mistreated my son, lied to me, and now is absolutely scary to be around. Well, she was always scary but now she is really Scary Mary, if you know what I mean. The corporate culture in that place is sick.

And I don’t go to someone who is sick to help me get well, you know?

I want to stop going there immediately, but we are waiting for insurance options to open up. Sad, isn’t it? And believe me, they understand that they’re the only allergist in town. It completely affects their “care.”

I’ve never been treated this way in my life. I have to pray before every visit into their offices. The kids have to pray. We have to pray for strength to make it through.

I just don’t think it has to be like that.

Additionally, I was disturbed that this situation was treated so dismissively by the same of group of doctors that manufacture and sell the air filters I promoted and had begun to sell from my website. I was so impressed with these air filters that I was willing to get into the business of selling them.

Now that the intregrity of their medical practice has proven to be what it is, I certainly can’t stand behind their consumer products. The whole idea just makes me sick.

I realize that medicine is a business, just like anything else. However, if the lady at the counter at McDonald’s is hateful, the manager will do something about it. Not for “revenge,” (which is the word their manager used to describe our concern – how caveman is that?), but for common decency, common sense, and for the betterment of the out-of-line employee as well as the health of the business. That’s the selfish side of customer service – I will take care of the business for the business’ sake, and by doing so, I must take care of the customer.

In a more sophisticated market, such as real estate, law, accounting, and, yes, medicine, a higher level of professionalism than what one finds at McDonald’s is expected.

Sadly, I’ve had better customer service there – and I rarely even go there – than I got from our allergist and his team. We went out of our way to make sure they understood our hearts. We were called liars, and they currently “work around” the problem. The work-around isn’t working, though. You can’t work-around the culture they’ve empowered and encouraged by condoning such abuse. Period.

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Someone fed my kid a peanut at school

March 30, 2007 at 3:48 pm (education, food, kids, school, social issues)

Well, last week we had our first problem at my son’s school. A child mother brought in brownies for a birthday celebration, and even though my son had his own safe cookies to enjoy, another child told him her brownie was safe, and she shared it with him. It did contain peanuts.

The good news was that he did not have an anaphylactic reaction. He got two bumps on his arm. However, I wouldn’t have known about the incident at all if my son hadn’t told me.

What could have happened?

His teacher expressed concern, but the whole thing makes me wonder if we are doing the right thing sending our child to a public school. I don’t think you could ask for a better school than this. It is wonderful.

BUT, they compromised Sam’s safety.

Would it be conscionable to compromise any child’s life? Would it be okay to bring in a poisonous snake if only one child in class could possibly be poisoned by it?

I have been criticized for drawing these parallels, but I challenge you to draw a better one.

My kid was okay this time. But what if there is an increased frequency of incidents in the future, because they know this peanut didn’t kill him? What if he starts getting repetitively accidentally exposed, because no one else in the classroom has to be supervised in this way?

Flat-out, letting an allergic child eat a dangerous food is an act of disregard for that child’s safety.

We have had problems with there being lentils in the room, as well. I just don’t get that they are very concerned about the reality of this stuff being unpredictable and dangerous for Sam.

I’m not an alarmist. I’m a mother striving for a safe learning environment for her child.

I wouldn’t take your child out to sit on the highway for story hour, so PLEASE do not feed my child peanuts. It is the same thing. It is life-threatening, inconsiderate, and unwise.

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Food Allergy Initiative – New law passed!

March 19, 2007 at 7:44 pm (Allergy News!, food, legal, social issues, USA)

GREAT NEWS!
The Food Allergy Initiative is pleased to report that New Jersey Governor Jon Corzine late Friday evening signed into law bill A961/S79, an important new law that calls on the New Jersey Department of Education to create food allergy management guidelines for schools, and calls on school districts to develop food allergy policies based on the Department of Education guidance.  The new law also clarifies the procedures by which students can carry prescribed epinephrine at school, as well as school staff members becoming trained to administer epinephrine when the school nurse is not immediately available.

The Food Allergy Initiative and the Food Allergy & Anaphylaxis Coalition of New Jersey will be working over the coming months with the New Jersey Department of Education to create the new food allergy management guidelines.

Special thanks to all of you, especially food allergic parent advocates Susan DiAnthony and Barbara Calluori, who helped advocate for the passage of this landmark new law.

Robert M. Pacenza
Executive Director
Food Allergy Initiative
1414 Ave. of the Americas, Suite 1804
New York, NY  10019-2514
212-207-1975 (direct line)
917-338-5130 (fax)
rpacenza@faiusa.org
http://www.faiusa.org

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Peanut Allergies by Brenaya Hewlett

March 19, 2007 at 7:12 am (Canada, education, kids, medical, nut-free, peanut, safety, school, shots, social issues, USA)

“May contain traces of peanuts” “Made in a facility that also processes peanuts.” These are two sentences I hate the most.” The one sentence I love the most, “made in a peanut free facility” Chairperson, honourable judges, ladies and gentlemen and fellow students. I’m going to share with you how a person gets an allergy, what anaphylaxis is and how challenging it is to live with a peanut allergy. Do you like peanuts? Well I sure don’t because to me, they are criminals.

I got my allergy because I was born prone to allergies. I have significantly lower levels of enzyme which breaks down the chemical that causes bronchial spasms. I also have high levels of IgE antibodies that are activated during and allergic reaction. Allergies are hereditary instead of someone just getting it from one parent I got it from both of mine. Because both of my parents are already lacking enzyme to give to me they give me even more IgE antibodies. I got my peanut allergy after I was born. Since I was born prone to allergies that is what started it. When my mom was breast feeding me almost every food made her nauseous but she still needed her proteins so she overdosed on peanut butter and whole peanuts. Since I have low levels of enzyme my kids will have terrible allergies because I have practically none to pass on and way to much IgE to give. Studies show that over sanitized conditions in the west have caused immune systems to overreact to absence of other infections.

What is anaphylaxis? A dictionary defines this as “a term commonly used to denote the immediate transient kind of allergic reaction characterized by a contraction of smooth muscle and dilation of capillaries due to release of pharmacologically active substance classically initiated by the combination of an allergen, mast cell-fixed and cryophilic antibody known as IgE” you might now have understood any of that but in simpler words anaphylaxis is an immediate allergy reaction that completely shuts down every single thing in your body. It is a life-threatening reaction when cells in your respitory system swell causing suffocation, cardiac failure and loss of consciousness. It must be instantly treated with epinephrine to buy you enough time to get to the hospital. Statistics show that 1.5 percent of Canadian kids have deadly peanut allergies and 15 children die a year because their peers at school were eating peanuts around them.

It is extremely challenging to live with a peanut allergy. Just imagine living your whole life knowing you could just touch a door knob and die. Try a little experiment, be me for a week you cant eat anything with any type of nut in it. Each food that you do eat you have to read the ingredients twice to be sure. At the bottom of the list get used to seeing made in a facility that also processes peanuts, and if it does say that sorry you cannot consume. If you accidentally touch peanuts, scrub your hands arms and face for five minutes and air dry. if you smell peanuts cover your mouth and nose and run away until the smell is gone. It is harder than it may look!, And there is always cross-contamination. When you are at your friends house you cant eat anything. If they had peanut butter on the knife and then put the knife in the margarine and you ate it well it is now time to go to the hospital because you are in anaphylactic shock. To sum it up, peanut allergies aren’t just something that the victim takes cautions about but everyone needs to.

In conclusion, 73 percent of people don’t know enough about allergies to be around a person that has severe reactions. Today you heard how people get allergies, what anaphylaxis is and how annoying allergies are. Next time you meet someone with any type of severe allergy show some sympathy for them. If they go into shock get out the epi pen and pull off the grey cap at the tip and jab it in their thigh, believe me it might sound weird but you will be their hero.

Brenaya wrote this speech for school. Thanks for sending it in!

Oh, PS. Sometimes people write to me and say they are having trouble breathing. If you do that, PLEASE go to the emergency room or doctor as before you even finish your email! I would drive you, myself, but oftentimes I get emails from other countries from children saying they are having trouble breathing. As a parent (and a human being) it troubles me to think that you emailed me and then perhaps collapsed.

If you write me once because you are feeling sick, please write me later and tell me you are okay. I worry about anaphylaxis and asthma and what might be happening to you.

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Awesome new Allergy cookbook

March 19, 2007 at 7:04 am (books, Contests, cooking, education, food, Products, social issues, Websites)

I won a copy of The Whole Foods Allergy Cookbook by Cybele Pascal, via allergymoms.com.  Since I am into eating organically as well as avoiding our food allergies, this book has great appeal to me!

Thank you, Gina and Cybele!

If you are not signed up for allergymom.com’s great email newsletter, you are missing out.

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Airline’s attitude over treatment of allergic passenger slammed

March 16, 2007 at 6:37 am (Allergy News!, newspapers, social issues, travel, UK)

Thanks, Karen, for this submission.

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