Just after Christmas I heard that a Chicago teenager had died of anaphylaxis on the last day of school before the Christmas break when she had Chinese food with her classmates. These stories always make me cry because while I cannot understand what it is like to lose a child, I can tell you that I have imagined it more than once. My heart goes out to the family of this child.

From all accounts, this was a child whose parents had well-equipped her for living with her food allergies. School staff had checked on the safety of the food to be served more than once and school officials and classmates were well aware of the peanut allergy. The details have not been released so the public may never know what exactly happened. There is some question of whether epinephrine was injected. The stories indicate that it is against Illinois law for staff to administer epinephrine unless the prescription is specific to the student. If you’d like to know more, you can read the Chicago Tribune article and the Allergic Living article.

I have many questions after reading the accounts; not in the interest of assigning blame but to understand and learn about what I can do with my own child and her school. The accounts indicate that in Illinois students are not allowed to have epipens with them and teachers can’t give another’s epi-pen to a child having a reaction. To me this is highly disturbing. Is this an indication that the fear of liability trumps medically necessary action?

So now you’re wondering, okay Alana, you title says Tragedy and Hope; where’s the Hope part? While we can never bring back these children, we can use these tragedies to better protect all anaphylactic children. After a similar death in an Ontario school, we got Sabrina’s Law. Sabrina’s Law helped provide the background for my province’s anaphylaxis policy and gave allergy advocates around the world a springboard for their own country’s anaphylaxis laws and policies. I have Sara Shannon to thank for making sure that the lessons learned from her daughter Sabrina’s death would not be forgotten. My child has benefited from that advocacy.

To that end, more hope was created yesterday in the US when President Obama signed into law FAAMA. This stands for the Food Allergy and Anaphylaxis Management Act, a national law for all states to protect anaphylactic children in schools. Voluntary guidelines and materials will be created for states to access. You can read the information about what this law means and how it came about on the FAAN website.

I look to these developments with hope to educate all about the very real risks of anaphylaxis and to prevent any more needless deaths.

It’s been one year since we were in the ambulance and to the hospital with Megan’s allergic reaction to kiwi.  When I mentioned it to her on Saturday (the exact anniversary date), she was dismayed.  In her eyes, remembering the date was the last thing she wanted to think about since she has no desire to ever go through that again. 

Believe me, I have absolutely no desire to go through that again either.  It was the first time she had a reaction in 9 years, the first time she was without us during a reaction, the first time she had to call 911 and the first time she had to self-inject the epi-pen.  And not only did we need to deal with the medical emergency with her, we had to emotionally deal with her older sister who was traumatized by the incident and our friend’s son who had offered our daughter the drink that Megan reacted to even though it wasn’t his fault.

As much as I want to follow Megan’s advice and forget about that last reaction, I can’t, nor do I feel I should.  I feel that we had gotten complacent because we had been so careful for so long and that was part of the reason why the reaction occurred.  It’s not that we started cutting corners like eating food products that had “may contain” on them or that we stopped checking out ingredients in the grocery store.

The complacency was more about thinking that our “safe” places (as my girlfriend’s house where the reaction occurred normally is), were absolute and that all items provided in those safe places didn’t need another check.  A  simple check of the Koala brand lemonade spritzer would have quickly revealed that it was a kiwi-lemonade drink.  But that didn’t happen.

So I need to remember and also climb down off of my high horse.  Our allergist had been surprised that despite Megan’s extremely high test numbers, we had not had a reaction for so long.  I wore it like a badge of honour (see how good I am with managing the food allergies).  Now, I think that diligence is absolutely necessary but sometimes it’s also about being lucky. 

So Rob and I are doing our best to manage the complacency that can creep back in when you don’t even know it.  We will continue to remind our children, all family members and others that come in contact with our allergic child.  But I’ll also cross my fingers and toes plus pick all of the four leaf clovers that I can find.  Whatever it takes to get us through another year.

Researchers at National Jewish Health released a study in the Journal of Pediatrics on October 29 that says that many people are mistakenly avoiding foods that they believe their children are allergic to or believe is affecting eczema in their child.

Part of the problem is the difficulty in diagnosing food allergies. It turns out that a combination of patient history (including family history and previous anaphylactic attacks), skin tests, blood immunoassays and food challenges have to be assessed before a truly definitive diagnosis of food allergy can be applied. However, in practice, patients do not always go through these as part of the diagnostic process.

Add to that the fears of the food allergic and their parents, such as my child’s strong aversion to a food challenge, and you get many people who are avoiding foods unneccessarily. Check out the link to the study to see how many study participants were able to add foods back into their diets: http://www.sciencedaily.com/releases/2010/11/101104171350.htm

Do you ever wonder why you never see the words allergy free on our products or website?

I began using the term allergy friendly about 6 years ago and ever since then have been correcting those who refer to Nonuttin’ products as allergy free.  While I can understand that like “gluten free”, it’s a quick and easy way to refer to products that are designed for those with food allergies, it doesn’t communicate the true reality of food allergies. Read more »

It’s bad enough that we need to convince people in our lives that food allergies besides peanut can create life threatening reactions too.  But what happens when even allergy researchers believe that certain food allergies are not as serious? Read more »

I had a friend who had an anaphylactic reaction to MRI dye last Monday.  In for an MRI to determine answers for a health issue, she had never before had an anaphylactic reaction to anything and had no food allergies.  Her only previous reaction to anything was a very swollen leg last year after a bee sting.

The scary part to me is what happened when she told the technician she was feeling funny and hit the panic button.  To be fair, MRIs and CAT scans are rather tight spaces and more than one patient has been known to have panic attacks so this was how she was initially treated.  A doctor was called in who took her vitals which appeared to be fine so she was led through breathing exercises to “calm down”.  When she began to have difficulty talking due to a swelling throat and tongue, they then noticed that her back was covered in hives.  This is when she asked, “Can’t you give me something to stop this?” Read more »

On Friday night our daughter had her first food allergic reaction in 9 years.  It was also the first time she self injected and the first time she had a reaction at a friend’s without an adult present.  Her big sister also experienced the first time she was present at a reaction that she remembers.  And it was the first time I was out and received a frantic phone call about a reaction.

All in all, a lot of firsts that I would rather have done without.  While we have learned a lot from the incident including phoning 911 before phoning Mom and that all of the training that we’d done was successful, the fear box has been opened.  You know, the one you stuff all of your allergic parent fears into so that you can lead a somewhat normal life? Read more »

Mustard has become Canada’s 11th priority allergen after a review by Health Canada as announced last week.

Health Canada had been reviewing several different foods including garlic and onions but only mustard made the list.  This is because while mustard allergies are not exactly rampant, they are more common than you might think and the severity of the recorded reactions has prompted concern.  Garlic and onions were considered but the evidence of recorded reactions shows less severity and more intolerance as opposed to an anaphylactic response.

If you’ve been following my blog, you’re aware that I had a cousin react to mustard in the spring which shocked everybody in the family except me.  Given what I do, I’ve been aware for several years that Europe labels for the top 12 food allergens (plus lupin) which includes Canada’s top 10 with the addition of mustard and celery.  Since November of 2008, I’ve been adding mustard, celery and lupin to the list that I send my ingredient suppliers to document.  The results prompted me to add celery to the list of allergen declarations on the Nonuttin’ website.

Like prior allergen labeling laws before it, this new regulation will require  food manufacturers to plainly list mustard if it is an ingredient.  Currently, if you’re allergic to mustard, you must avoid any product that simply lists “spices” as a food ingredient.  If you take a look at any of the products in your food cupboard, particularly savory items, you’ll find a lot of products that only indicate “spices”.

It would appear at first glance that this must be a huge relief for mustard allergy sufferers.   My hope is that the amount of products they can eat will increase with better labeling.   Unfortunately, as many of you with other food allergies can attest, food allergen labeling can backfire when manufacturers put all of the priority allergens on their label.

In any case, the review has prompted Health Canada to put into place review procedures for the priority allergens as the prevalence of food allergies grows and more data is documented.  It’s not easy for food manufacturers but it really is necessary as we battle with increasing immune system issues.

I always thought that when my daughters reacted to milk as infants and that followed with more allergies to peanuts, tree nuts and kiwi, that we were the first of our extended family to go through this journey.  While we may be the only ones with an anaphylactic response to date, traveling and talking to both sides of my family while on holidays over the last several weeks has brought other food allergies to light.

First, my 60 year old aunt just got diagnosed with peanut allergies.  After several bouts of terrible stomach pains after a late night snack of peanuts, testing last month revealed a “new” allergy to peanuts.  It sure makes me wonder what’s going on with our immune systems that allergies are increasing on both the front end of our life spans as well as the latter part.

Second, at our recent family reunion on my husband’s side, we met up again with my husband’s cousin who has 3 children, all allergic to milk.  Upon further discussion, that cousin, her brother and my husband all feel sick when ingesting clam chowder and all of them have had reactions with swelling eyes while eating shrimp.  My husband has avoided these items for years simply because they made him feel so sick as a child.  However, we now know that when he has red, swollen eyes, it inevitably leads back to shrimp.  None of these people have ever been formally diagnosed, they’ve just automatically avoided shellfish due to their experiences.

My cousin reminded me that her father (my maternal uncle), is also allergic to shrimp, a fact he discovered in his 30s when he order chicken balls that turned out to be shrimp, not chicken.  Luckily, as a pharmacist, he understood what was going on and was able to get some antihistamines on board.  This was over 30 years ago when these kinds of reactions were not the norm.

And now, our youngest has added another allergy to the list, albeit an easier one to control.  While stealing a  chickpea from her sister’s salad last Thursday night, she experienced itching at the back of her throat.  Given that she’s allergic to peanuts, this new development isn’t exactly surprising since chickpeas are a legume.  So no more hummus and chickpeas in this house.

Can you trace back any incidents in your family over the last 30 years that could be attributed to food allergies?  Is it that they were always there but we either didn’t pay much attention or that those individuals didn’t like the way they felt when they ate a particular food and so instinctually avoided it?  Maybe they’ve always been there but weren’t as severe as anaphylaxis or that larger amounts (rather than traces) would only cause the reaction.

For those moms who blame themselves for their child’s food allergies, maybe we can let go of that and start attaching blame a couple of generations back.  Sounds good to me.

I’m not sure what to think about a recent clip that I viewed on YouTube showing a young man having an allergic reaction to peanut.  I had just come home from holidays and had several enewsletters waiting for me as I subscribe to many from the allergy and gluten free worlds.  One particular enewsletter had a link to a clip showing a peanut reaction.  I thought it might be informative for both my husband and my allergic child and so forwarded the enewsletter to my home address for viewing later that night.

When I got home, I discovered that my husband had already watched the clip and that my allergic child had refused to watch so I sat down to watch it by myself.  As I was watching, my husband came in to sit beside me and guage my reaction.  At the end I was really quite disturbed.

You may have seen this clip but if you have not, the young man has a reaction over several hours after accidentally ingesting a peanut candy bar hidden in a cake.  His filming over these hours shows him gradually having a skin reaction (hives and flushing), stomach pain and vomiting, facial swelling and difficulty breathing.   I’ve seen this in my own child so, while not easy to watch, it was not surprising to me.  What was surprising was that after indicating he was having difficulty breathing, he went and “passed out” on the couch for several hours.

It would appear from the opening and closing remarks made by this young guy that his reason for posting the reaction on YouTube was to educate others as to what happens when those with food allergies have reactions and why they should be taken seriously.  So why, you ask, would I find this upsetting?  Because I think that the opposite of his educational intention is clearer in the clip.  His accidental message is that he can essentially “ride out” the allergic reaction and that after having systemic reactions, it’s okay for an allergic person to go lie down.

If you read the posted reactions to this clip, you’ll find other people asking the same questions that I did.  From his responses to those questions, it appears that he did have antihistamines and epi-pens available but it isn’t clear exactly what he used and when, if anything,  in the clip.  So the message that clearly comes across is that a wait and see and lie down on the couch approach is a good idea.  Not in my book!  So in the end, I’m very glad my allergic child didn’t see the clip and I don’t want her to except perhaps to point out at which time in the clip that using the epi-pen and calling 911 would have been a good idea.

After the clip, there are several other posted videos on allergies but I couldn’t bring myself to watch any of them.  Not if what I was going to see was potentially the last video that person would make.