Higher-res Epi-pen how-to trainer video

May 14, 2007 at 12:06 pm (Allergy News Podcast. Listen free., Allergy News!, education, medical, Science, video)

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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:

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

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

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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.

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Sam models his Nut Free Zone hoodie.

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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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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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CHILD magazine article on life with food allergies

March 16, 2007 at 6:35 am (Allergy News!, education, food, kids, magazines, nut-free, school, Websites)

This is a good one!  Thanks for all the emails

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Peanut allergy immunotherapy News

March 1, 2007 at 1:12 pm (Allergy News!, education, medical, nut-free, peanut, safety, USA)

AAAAI: Oral Immunotherapy Dampens But May Not Cure Peanut Allergy

By Neil Osterweil, Senior Associate Editor, MedPage Today
Reviewed by Robert Jasmer, MD; Associate Clinical Professor of Medicine, University of California, San Francisco
February 26, 2007

Add Your Knowledge™ Additional AAAAI Coverage

Scott D. Nash, M.D.
Duke University

SAN DIEGO — An oral immunotherapy regimen can help take the sting out of severe peanut allergies, reported investigators here.

Five of seven children with severe peanut allergy were able, after two years of immunotherapy, to tolerate a dose of 7.8 grams of peanut flour, equivalent to eating more than 13 peanuts, reported Scott David Nash, M.D., of Duke in Durham, N.C., and colleagues.
Action Points
Caution patients that oral immunotherapy should not be attempted at home, and should only be performed under the close supervision of a physician because of risk of anaphylaxis.

This study was published as an abstract and presented as a poster and at briefing at a conference. These data and conclusions should be considered to be preliminary as they have not yet been reviewed and published in a peer-reviewed publication.
Yet while oral immunotherapy can desensitize patients to peanuts, children who undergo it may not be in the clear, cautioned the authors in a featured poster session at the annual meeting of the American Academy of Allergy, Asthma & Immunology here.

“We think that our patients are now at decreased risk for anaphylaxis if they have accidental ingestion [of peanuts], but we’re not recommending that our patients reintroduce peanuts into their diets, and all patients were on peanut-elimination diets during the study,” said Dr. Nash.

The investigators enrolled children with a convincing clinical history of peanut allergy who had peanut-specific immunglobulin E (IgE) of 7kU/L or greater.

The children were started on a modified rush immunotherapy protocol, performed in the research unit, in which they would receive over one day increasing multiple doses of peanut flour (mixed in a food of choice, such as applesauce), with dose escalating from 0.1 mg to 25 mg, or, if tolerated, to 50 mg. About half of the patients were able to tolerate the 50 mg dose by the end of the day; the remainder were able to tolerate either 12.5 or 25 mg, said Dr. Nash.

The children then went home and remained on their current dose daily, returning to the center every two weeks for a dose increase until they reached a dose of 300 mg, equivalent to about one peanut. Parents were asked to keep a daily diary of symptoms.

After patients had been maintained on 300 mg of peanut flour daily for two years, they returned to the center for an open food challenge of up to 7.8 g of peanut flour, equal to a good adult-sized handful of nuts. The challenge was delivered as escalating doses beginning at 600 mg every 30 minutes up to the maximum.

In all, five of seven patients had no reaction on the food challenge. One patient took the full dose, but 90 minutes later had a reaction, including stridor, that required epinephrine. The remaining patient made it to 4,200 mg, and then required epinephrine for cough and diffuse hives.

They also looked at immunologic characteristics of food allergy, and found that peanut-specific IgE and IgG both rose initially and the fell during the study, while peanut-specific IgG4 increased throughout the study.

“Peanut oral immunotherapy, we feel, is safe and effective for peanut-allergic patients, and we feel that our immunologic findings for peanut oral immunotherapy are similar to what we find for other forms of oral immunotherapy,” Dr. Nash said.

No financial disclosure information was reported.

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AllergyMoms.com conference

February 8, 2007 at 5:18 pm (Allergy News!, Canada, conferences, education, kids, medical, safety, social issues, USA)

Well, I missed the opportunity to meet some kick-ass Allergy Moms.  Here are some photos and info about ladies who are taking the matter of life-threatening food allergies into their own hands, serving our community and vowing to contribute to a change.

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Sara Shannon signing a letter she wrote to Senator Orie on ehalf of “AllergyMoms” back in Oct.

For those of you unfamiliar with Sara Shannon–she is the mother of the young Canadian girl who died of anaphylaxis in the fall of 2003.  The news story broke hearts around the world, and as I hear of it, the girl’s mother is changing lives as an activist to protect other children from a similar fate.

Listen to Sabrina explain life with allergies in the documentary she made about life with severe allergies, at age ten.

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Attendees of note:

Front row:
Robyn O’Brien, Gina Clowes, Sara Shannon, Susan Taichman-Robins, Maria
Acebal

Back row:
Anna McCartney, Maureen Polensky, Kristie Serio, Catrina VonderMeulen,
Teresa Newlands

Robyn (Boulder, CO)
Gina (Cranberry Twp,PA)
Sara (Ontario, Canada)
Susan (Philadelphia,PA)
Maria (Washington, DC)

Anna (Seattle,WA)
Maureen (Bucks Count,PA)
Kristie (Dallas, TX)
Catrina (Cincinnati,OH)
Teresa (Cleveland,OH)

As you can see, this conference was exceptionall well-attended!  I will be checking my email more closely in the future.  I’m so bummed that I missed this.

Speakers:

Pennsylvania State Senator Jane Clare Orie
Sara Shannon, Food Allergy Advocate, Ontario
Todd Green, MD, Assistant Professor of Pediatric Allergy and Immunology Children’s Hospital of Pittsburgh
Terri Brown-Whitehorn, MD, Attending Physician, Division of Allergy & Immunology, Children’s Hospital of Philadelphia (CHOP),
Susan Taichman-Robins Esq.,Pennsylvania Coalition for Food Allergy
Kristie Serio, Food Allergy Support Team (FAST) Texas
Anna McCartney, Food Allergy Education and Support Team ( FEAST), Seattle
Maria Acebal Esq., Safe@School Partners, Washington, DC
Robyn O’Brien AllergyKids Foundation, Boulder
Paul and Catrina VonderMeulen, Food Allergy Advocates, Cincinnati
Maureen Polensky, RN, Pennsylvania Coalition for Food Allergy
Barry Lank from Lank/Beach productions is Toronto
Gina Clowes, AllergyMoms
AllergyMoms Food Allergy Support and Advocacy Group

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Boston Legal episode on food allergies

January 20, 2007 at 9:58 am (Allergy News!, education, kids, medical, nut-free, peanut, school, social issues, television, USA)

According to Gina, I missed a TV show featuring food allergies.  A child died of peanut allergy in a classroom scenario–I’M GLAD I MISSED IT.  However, I do hope the show spread some awareness.  Here is a statement from FAAN about peanut allergy, food allergy, reactions, etc:

Boston Legal: It’s not about who is liable

The fictional Boston Legal episode which aired on Tuesday, January 16 th on ABC featured a peanut-allergic child who died after accepting candy brought in from home by a classmate. Unbeknownst to the child, the candy contained traces of peanuts. The teacher was on her cell phone with her back to the class when the reaction began.

When the teacher turned to face the class, she recognized the reaction was occurring and quickly administered epinephrine. Unfortunately, the child died (within 20 seconds of ingestion). The family sued the teacher and lost.  The fictional defense lawyers contended that teachers are over-worked, there are a lack of school nurses to care for students, the family had the means to hire a “shadow nurse or aide” for the child and didn’t, and that they could have sent the child to private school where there is a lower student to teacher ratio and didn’t.

The show accurately depicted the fear and constant vigilance individuals with food allergies live with day in and day out. Hopefully, the lucky viewers who do not have food allergies have a better appreciation for food allergies and will understand when someone says that even trace amounts of an allergy-causing food can be fatal—that they are not kidding.

The show has generated outrage and fear in parents of children with food allergies throughout the country. It also misrepresented a few key facts, which have caused great concern for families raising children with food allergies.

The time sequence presented was designed to be dramatic. It achieved that but was misleading. Fatalities don’t occur 20 seconds after ingestion. Epinephrine, the medication of choice for handling a severe allergic reaction or anaphylaxis, works quickly and patients often respond within minutes.

The lawyers on the show suggested that the family should have sent their child to a private school in order to receive the best care. This argument, however, ignores the fact that federal law grants every child the right to receive free public education. What is more, there is no data to support the notion that children are somehow “safer” in a private school setting.

The lawyers on the show also stated that the family should have hired a nurse to follow the student around and keep the child safe because teachers can’t be expected to keep children safe. This show unfairly depicted how teachers handle food allergies in the classroom. Millions of school-age children with food allergies are kept safe because of the systems in place by teachers, parents, and students working together.

If you have a child with a food allergy:

  • Talk to your child’s doctor and be sure you know what symptoms to look for during a reaction and what action to take. Share this information with anyone who is caring for your child.
  • Speak to your school principal about any concerns for keeping your child safe. Be sure systems are in place to recognize and treat allergic reactions quickly—quick response is key.
  • Remember that the real power lies within the child. Role play various situations, stress not sharing food with others, and suggest the use of FAAN’s Be A PAL: Protect A Life from food allergies program to educate classmates and friends.
  • Let the show’s producers and the network know what it’s like to live with a food allergy. Send a copy of your letter to FAAN.

David E. Kelly Productions
David Kelly, Executive Producer
1600 Rosecrans Ave
Manhattan Beach, CA 90266 ABC Audience Relations Department

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