Inadvertent food challenge

Oops.
DS1 and mom had just gotten home from a dinner with classmates.  They left early because he was throwing up.  Lots.  A few hives, runny nose, and more throwing up.  It was a weekly dinner and we had packed him a lunch, like we always do.  We thought it was because he drank from DS2's reusable water bottle, which he may have cross-contaminated with something.
Turns out it was the fusilli in the lunch we packed him had "pasteurized egg whites" as an additive at the bottom of the ingredients.  Oops.
Thank goodness he'd only eaten four pieces of that fusilli by the time he noticed something wasn't right.  Imagine.
At least we know he's not so reactive as to get sick from the unlikely cross-contamination of a shared water bottle.

anxiety lessening - or is it overconfidence?

Lately I've allowed myself to become a little nonchalant about DS2's allergies (PN, TN, and peas beans and lentils) at restaurants etc without double-checking.  Feels good not to have to worry about what your kid is eating.  The rest of you have no idea how lucky you are.

is KLM intercontinental somewhat accommodating?

I'd like to from anyone who has any real-world experience with KLM intercontinental to Europe.

We are flying KLM to/from Amsterdam this summer - their policy on nuts is basically: nuts everywhere.  

"On intercontinental flights, we serve a mixed nut snack in Business Class and almonds in Economy Class... We recommend asking your doctor or KLM Cares about whether you should be travelling." (from https://www.klm.com/travel/ca_en/prepare_for_travel/travel_planning/special_meals/index.htm#p1, emphasis added).  

Besides waving epipens, allergist letter and own foods through the airport, and wiping down all reachable surfaces around the kids, is there anything else we can/should do?  they suggest a medical clearance signed by doctor is necessary - can anyone attest whether it would do more help than harm?

Prevention planning in elementary schools

Had a chat with my kids school principal yesterday, in part about how last year's incident could have been avoided  (I haven't posted about that incident because of investigations that were underway, and honestly, I was too angry).  She also received my suggestions well and supported my idea to help facilitate prevention planning in elementary schools.

Two things all institutions (schools, hospitals, fundraisers, etc) need to do when placing special orders for an event

1. FAX (don't phone) special orders, and specify you want detailed ingredients and allergy information.
2. Have your order DELIVERED (federal labelling regulations don't apply if you or someone on your behalf pick up in person). That'll make for a proper paper trail and hold the bakery/deli/etc responsible, while giving you something to review before allowing your kid to eat it.

The principal recognized the order should have been faxed, and was shocked that large orders are not covered by labelling regulations unless delivered.  These are elements that should be mandatory elements of a prevention plan.  After four years of asking for one, and last years incident, the conditions are about right to develop one.

The principal agreed, and suggested a standardized prevention plan (best practices, checklist, guidelines, etc) would help parents and principals negotiate how they can best accommodate individual students with severe food allergies in the school environment (as required under Sabrina's law and board directives). Such a standardized list would also make it easier for principals when moving between schools.

If you are a parent and willing to help develop a recommended allergy prevention plan for elementary schools, or can point me to existing materials that can be used as starting points, please leave me a comment below.

Venting to the board

Got opportunity to vent my deeply upsetting, discouraging and extremely frustrating story of my kid going into anaphylaxis at school last year with some of the board superintendents today.  Wounds are still fresh - I hope raised more awareness of the issue at the board level than I did damage to my reputation (hopefully none...).

As usual though, the board (and the schools) and myself have to set priorities, and I have a lot of pots brewing trying to fix things, including myself.

anaphylaxis at daycare

Due to an unfortunate series of misunderstandings, the daycamp offered Lucas a fudgecicle (with modified milk ingredients) last Thursday.

He started vomiting (a lot, reportedly) and got a red puffy face, so they gave him benadryl (which we've told them was ok for MINOR reactions when allergens weren't actually known or suspected). They also called to inform me (but neglected to say he had milk). Since it was close to pick up time anyway, I choose to go get him to comfort him at home.

When I arrived, Lucas was flush but playing with his friends. They pulled the box out of the trash and I zoomed right in to where it said "modified milk ingredients" in the main ingredients. I whisked him off to the hospital, and ran carrying both children from the car to the ER on the hottest day on record. "Anaphylaxis" I told the nurse, ignoring the queue. I must not have been in good shape, because she asked "You or them?" Other nurses came in right away, relieved me of the kids and guided me to a gurney to recover.
Regaining composure momentarily, I was brought to see Lucas plugged in to oxygen, IV and a bunch of monitors. Again. I was out-of-my-mind furious at the daycamp for being so negligent and careless despite all our awareness-raising efforts and trust I had in the staff.
The daycamp operator listened to what I had to say, conducted a quick investigation and convened an emergency board meeting to decide what to do.
No single person was responsible for the popsicle, but his assigned instructor was the last in line and was reprimanded partly for not double-checking the ingredients, and mostly for not recognizing the severity of the reaction or troubleshooting its cause for appropriate treatment.
The center's food policy is still being discussed - there is resistance among the members as to whether they should stop serving any food at all to anyone (saving everyone from any possibility of error) or just isolate Lucas by never giving him anything.
In the short term, we had signed him up for this week and intended to have him return, but he's had a fever and has stayed home most of the time. Perhaps tomorrow, so he can enjoy the (hopefully food-free) last day of the summer camp.

Recognition

Interesting that our pediatrician used Lucas as a case study in allergies this morning, going through all the steps of the "allergic march", from constant gastro-intestinal issues as a baby, to eczema and asthma. She also recounted the anaphylactic reactions he had after vaccines at 12 and 15(?) months in surprising detail.

Though I questioned her ability to manage emergencies at the time, I acknowledge she knows a lot about allergies now, and appreciate that she cares to share that knowledge so others can benefit from that experience as well.

near-incident at a school event

School organized an outdoor event (winter olympiad) and, unbeknownst to us, had a hot chocolate station to help keep the kids warm. My wife found out because she happened to be there, and inquired about the ingredients. "Oh they're safe, we checked." Good thing my wife double-checked, as one of the main ingredients was "modified milk ingredients" and there was a "may contain traces of eggs" warning.
She called me to whip up some home-made hot chocolate and rush it over to the school, then told the office she wanted to meet with the principal to discuss.

One week later without news, I dropped in at the VP's office, who apparently was just about to call me. She had the box with her and didn't realize "modified milk ingredients" was milk. (?!) She also hadn't read far enough to see the egg warning. (??!!)
After a "friendly" little chat, I sent the P and VP an email reminding them of the seriousness of ingredient-awareness for all people with allergies, of the board's anaphylaxis policy, and offered to help them meet the policy's requirements for prevention planning in the next week or two. I hope they'll take me up on that offer.

Media Advisory - Consumer and health advocates to call on PM to listen

from http://www.newswire.ca/en/releases/archive/February2011/01/c6957.html

Media Advisory - Consumer and health advocates to call on Prime Minister to listen to people at risk of life-threatening reactions, not just brewery industry on proposed food labelling regulations

TORONTO, Feb. 1 /CNW/ - Stalling by the federal government and last minute opposition by the powerful brewery industry are putting important proposed changes to Canada's food labelling laws at risk. The proposed regulations will make it easier for millions of Canadians affected by food allergy and celiac disease to know if there are ingredients in food or beverage products that could hurt, or worse, kill them.
As a result of this challenge to an important government initiative in support of public health, medical professionals, allergy groups, consumer activists and concerned Canadians are calling on the Prime Minister to show leadership and place the public interest over that of a private industry. They will be countering arguments in favour of an exemption to the regulations for the brewery industry and releasing important new information in support of passing the proposed regulations.

Who:

Laurie Harada, Executive Director, Anaphylaxis Canada Jim McCarthy, Executive Director, Canadian Celiac Association Dr. Charles Frankish, Allergist

Life Embrace (video)

vigilance and prevention

from http://www.allergicliving.com/forum/viewtopic.php?t=4216

The hives, swelling and severe breathing difficulty that people may experience during an allergic reaction are not symptoms of a “psychogenic illness,” but rather an unbelievably frightening and dangerous response of the immune system to certain foods the body misinterprets as harmful. The fact is, food is the leading cause of anaphylaxis outside the hospital setting, and many children and adults die each year because they ate something they thought was safe. Once a reaction begins, no one knows how bad it will be, hence the worry and fear that is part of living with food allergies.

[...] Currently, avoidance is the only way to prevent an allergic reaction for a true food allergy.

When you tell the parents of a child with a food allergy that their child could suffer, wind up in the hospital or worse unless they follow strict instructions from a doctor, you begin to understand why parents of children with food allergies are so vigilant. For those parents raising children with food allergies, educating others to take food allergies seriously is vital to preventing a reaction.

D'Italiano breads

Found my notes from a telecon I had with Nathalie at Weston brand breads last summer regarding potential allergens in their D'Italiano breads.
She indicated that most of their bread products contained (or may contain traces of) egg, dairy, soy, and/or more, but their Thintini breads (original and whole wheat) are allergen-free and are made in a dedicated facility.

Kudos to them also for posting their ingredients, allergy warnings and nutritional info so clearly on their website!

sweet poem about the emotional journey

This poem is pretty bang-on. My wife received it at an allergy support group meeting a while back, I just stumbled upon it myself tonight. Of course I googled it, and support groups for parents of kids with all types of disabilities everywhere in the english-speaking world use it. No surprise there.
Ironic thing is that I have visited family in Holland many times, and we visited Italy when only 3mos pregnant with our child.

Welcome to Holland - Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this ...

When you're going to have a baby, it's like planning a fabulous vacation trip … to Italy. You can buy a bunch of guidebooks and make your wonderful plans. The Colosseum the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. Its all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says "Welcome to Holland.”

“Holland?!?” you say. “What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a new language and you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they're all bragging about what a wonderful time they had there. And the rest of your life, you will say "Yes that's where I was supposed to go. That's what I planned".

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Encouraging!

Higher asthma rates in first-born kids linked to pregnancy conditions: study
May. 20, 2008
Provided by: The Canadian Press
Written by: Sheryl Ubelacker, Health Reporter, THE CANADIAN PRESS
http://www.medbroadcast.com/channel_health_news_details.asp?news_id=15403&channel_id=2014&relation_id=0

TORONTO - First-born children are known to have a higher risk for developing asthma and allergies than their younger siblings, and researchers suggest part of the reason may lie in the womb.

A study of 1,200 children on the U.K.'s Isle of Wight, followed from birth into childhood, found first-borns had higher levels of a specific immune-response substance in their umbilical cord blood than did second-born children. The substance is an antibody called IgE.

"This was important because there are two different schools of thought," lead author Dr. Wilfried Karmaus, an epidemiologist of the University of South Carolina, said in an interview. "One is considering the hygiene of the delivery of the birth is important for the immune (system) development and the other thought is that the prenatal exposure during pregnancy is important."

"And we could show that the immune markers (the IgE antibody) in first-born are already higher compared to second-born," he said. "I think it's not the hygiene, but the prenatal programming that plays a role."

(The hygiene hypothesis suggests that first-born children are not exposed to as many germs as their younger siblings are, so their immune systems overreact to common substances like grass, pollen and dust as if they were infectious agents.)

The study, presented at the American Thoracic Society's annual international conference in Toronto, also showed that the elevated risk for asthma and allergies persisted in eldest children throughout childhood.

At age four and 10, those with a higher amount of the antibody in their cord blood were more likely to have a positive skin-prick test for allergies and asthma compared with a younger sister or brother, Karmaus said Tuesday.

First-borns had more than double the risk of reacting to skin-prick allergy testing than did their younger siblings, the study found.

Karmaus said the amount of IgE is linked to a specific gene. In a first pregnancy, this gene appears to be more active, leading to a greater expression, or output, of the antibody.

"It's unclear what is the driving force behind it or what is the potential of risk for increased cord-serum IgE," said Karmaus, noting that women giving birth to their first child also have a higher blood level of the antibody than they do when having a second child.

"We assume that the contact between mother and child leads to a more immunological upset or arousal in the first pregnancy, so that something in the gene becomes expressed," he speculated, creating a higher risk of the child's immune system reacting to allergens.

Karmaus estimated that 20 to 30 per cent of all cases of asthma and allergy could be prevented if pregnancy conditions for first-born children could be altered somehow, although how that could be done is unknown.

"We don't know (how) yet, but the idea is to produce a condition during the first pregnancy which is comparable to a second pregnancy."

Commenting on the research, allergist Dr. Susan Waserman of McMaster University called the research interesting but by no means definitive.

The findings suggest that some process could be occurring in the uterus that affects first-borns and may represent an intervention point for preventing allergy, she said from Hamilton.

"But at this point it's just the subject of interest and future investigation."