Don't freeze the EpiPen!

So I'm beginning to realize how much of an issue keeping the EpiPen at appropriate temperature is in our climate.  I had to replace an Epipen earlier this week when it fell out of my purse in the truck.  I didn't realize this had happened until the next morning, by which point our -25C weather had frozen it solid.

A phone call to our doctor's office, then our pharmacist, and we now have a new Epi-pen, which I will *not* leave in the truck again.  *meh*

What was it?

We've had a busy couple of days, and eaten several meals out, so I guess I shouldn't have been surprised when William had a reaction last night.  On the plus side, while it was a serious one, it only involved his gastrointestinal system, so no anaphylaxis.  On the down side, because of what he ate yesterday, I can narrow the culprit down to supper, but no further.  My guess is that it was the pizza, but I'm not positive, and because he started a new round of antibiotics (for croup and strep throat) that required a double first-dose, I can't entirely rule those out as the culprit, either.

Suffice to say, the lesson learned from this is that while I've been careful, I may not be being careful enough.  And eating out presents such a challenge.  I don't want him to feel excluded by having him eat before events (like Walter's Christmas hockey party last night), which is what one of the other parents chose to do.  But I don't want him to have a reaction, either.  I'm a bit torn, because I thought I'd done enough leg-work to ensure it was safe, but I'm beginning to realize that people don't understand just how serious a severe allergy can be.  I'll do some checking this afternoon, when the rec complex is open, but my guess is that I'll have a hard time figuring out what the specific cause was.  Regardless, I can see us bringing a lot more of our own food for William for future events.  *sigh*

It's a good thing I read labels

Just like many school mornings around here, I got up early, tossed a batch of muffins together and got everyone organized for the day.  It was especially complicated because we got about a foot or so of snow last night, which meant leaving 45 minutes earlier than normal to make sure I got to my first class on time.

Because I was in such a hurry, I did something I rarely do and used a muffin mix (just add water & stir).  It wasn't until I was taking the muffins out of the pan and sorting out breakfast for in the truck that I even thought to look at the package's ingredients list.  

Good thing I did, as there is was, in teeny tiny little letters:  "contains sulphites."  Damn.  

Good thing I had one lonely muffin left form the last batch, as that's what William got.  Now Walter and I are going to be eating bran muffins all week, and I need to make a batch of William's favourite blueberry ones tonight.  *sigh* Good thing I checked, but I'm really wishing I'd have learned by this point to check first, and not after.  

Don't eat that!

We were out this afternoon at Walter's hockey game, where I was busy taking pictures.  Between shifts, I put the camera down to see William take a big bite of a cookie.  Cookie?  Cookie!  Asked D if he'd checked what was in it, and he admitted that he hadn't even thought about it.  ARGH!

William had only had two bites, but still ... so not a good thing.  Turns out my MIL had got it for him, having gotten herself one.  For some reason, despite my previous explanations, she thought he "only got a rash" from sulphites.  Wrong!

I'm frustrated and more than a bit angry at the moment. Yes, it was a simple mistake, but when a simple mistake can have such dire consequences as an anaphylactic reaction, well, I at least tend to be extraordinarily careful and I don't think I'm out of line to expect that others do the same.  I'd like to rant and rave, but I'm not going to.  I'll certainly be making sure, however, that this doesn't happen again (with her).  Sometimes I think I'm becoming a bitch about food, but quite frankly if that's what it takes to keep William safe, I guess that's what I'm going to have to become.

I feel like the food police

The boys both have bronchitis, so we spent far longer at the doctor's this afternoon to get prescriptions for both of them.  While waiting, a little boy about two wandered over to watch my boys play in the iPad (which is, by the way, the *best* child-waiting entertainment device ever!).  No problem, he wasn't touching, was just watching, not really getting into their personal bubbles, so I went back to marking.

Then the boy offered William a cookie, which William took.  I felt like I was in one of those slow-motion movie sequences, where the disaster is about to happen and there's nothing you can do about it.  I managed to stop him, reminded him nicely that he couldn't eat anything unless Mommy or Daddy told him it had no sulphites, then had to take him and scrub his hands, all the while trying not to over-react and become *that* shrill allergy mom.

The mother of the little boy was quite offended at how I reacted.  Considering I managed not to make a big fuss (and let me tell you I certainly felt like it), I wasn't too happy about that.  I was polite, but trying to explain a complicated food sensitivity to someone who is (1) not interested and (2) doesn't speak English as a first language is an exercise in frustration and futility.

We're trying to keep things as normal as possible for William, but it's so hard some times, especially when other people just don't *get* it.  And I'm getting frustrated at having to explain myself over and over and over.  *sigh*

Minor reactions

We've had several minor reactions over the last few weeks, and it's getting frustrating.  I just think I've isolated the source, when William has another one.  Thankfully, we're only dealing with digestive issues and eczema, but when we're being *so* careful to avoid sulphites, even a minor reaction is frustrating.  It's even more so when I know that even these small exposures could cause an anaphylactic reaction.

So far, it seems that these reactions are a result of one of three things.  The first is food products produced before the current labelling laws went into effect, which means that while new(er) product is labelled, older product isn't.  We can't even be sure that foods are safe if we've read the label, and that's incredibly frustrating.  It means that grocery shopping is a potential mine field, which is one of the reasons that we're moving towards an organic diet.

The second is food products that don't need to be labelled, which includes things that contain less than 10 ppm of sulphites.  Ironically, grapes that supposedly contained less than 10 ppm of sulphites were the source of William's original anaphylactic reaction.

The third is cross-contamination.  We've had a few instances of this and, with our switch to organic produce (thanks in part to Etomami Organics), there have been less and less of these reactions.  But we can only control so much of William's environment and food intake, so are having to slowly eliminate more and more items as we discover potential points of cross-contamination.

In this process, I've learned two things:  (1) there is no such thing as "sulphite-free" eating due to the fact that sulphites occur naturally in a variety of things* and (2) dealing with a complicated food sensitivity is extraordinarily frustrating!  I've dealt with serious food allergies before, but sulphites are a category all of their own in terms of the near-impossibility of avoiding them.  At the moment--knock on wood--we've had several days without a reaction, but I'll stock up on Benadryl, again, this afternoon, as the question isn't "if" there'll be another reaction, but "when."

________
*Look for a post on naturally-occurring sulphites, coming in December.

First CSA pick-up

Our first pick-up from the community-supported agriculture farm that we've joined--Etomami Organics--was this morning.  It was a bit chilly, and William was a bit of an orangutan and had to be shipped off to the truck to watch tv whilst I got everything organized.  After doing a bit of paperwork, we got our allotment for the month, which included:

• 2 lbs ground beef
• a 6-1/2 lb chicken
• 2 dozen eggs
• beets
• potatoes
• cabbage
• kolorabi
• Brussels sprouts
• butternut squash
• carrots (William was particularly excited about these)
• onions
• frozen broccoli, green beans, sauerkraut, and zucchini

Now that I've made room in the fridge, I'm going to plan out meals for next week, including what I'm going to do with the kolorabi and the Brussels sprouts!

An official diagnosis

So, it's official:  William's got sulphite sensitivity.  Not that it was a surprise, but I can say that I was secretly hoping it'd be the grapes.  Not so.  It's not often that you leave the allergist's office with him saying to you, "I'm sorry.  I wish it was something else.  You're not going to be able to eliminate it, but avoid as much of it as you can."  So there you have it, in a nutshell.

The visit was rather anticlimactic.  There was scrambling to find a grape to do a skin test, just to make sure it wasn't actually the grapes he was allergic to.  William thought it all very amusing, especially when they cut the grape in half and rubbed it on his arm.  The only positive reaction, though, was the histamine control.  And, as there's no reliable skin test for sulphite sensitivity, and because our detailed food diary indicated a positive correlation, that was the end of it.

Nothing's changed for William.  He had a minor reaction this morning to the Cheezies he ate last night (unbeknownst to me, damn!), but the Benadryl seems to have helped and he's currently sprawled on our bed upstairs, sleeping with Sleepy Bunny.

I thought an official diagnosis wouldn't really affect me.  After all, Ocam's Razor being what it is, the most logical culprit was sulphites.  But it's the "official" notice of a significant change in our lives, and whether I want to admit it or not, I'm going through the stages of change (or grief, depending on how you want to look at it), which is, in a way, why I'm posting this a week after the appointment.  Maybe, if I don't write it down, it won't be real.  Denial at its best, eh?

Asking about allergens ....

You'd think, with the prevalence and increased visibility of allergens, that people in the food service industry wouldn't look at you like you were from outer space when you ask about potential allergens and inquire about ingredients.  You'd think that they would be able to provide an ingredients list, or at least tell you whether or not a product contains one of Health Canada's identified top nine food allergens.  Well, don't hold your breath.  It's not going to happen.

We drove into the city this morning to get supplies to make pies for this evening's Fowl Supper.  As we were leaving the grocery store, I thought it would be nice to grab a cup of coffee and a treat for the boys for the drive home.  I ordered my coffee, then inquired about ingredients in their baked goods.  Not only did the woman serving me have no idea about the ingredients of what they were selling, she tried to sell me product anyway, even after I informed her that one of my boys had an potentially anaphylactic sensitivity to sulphites.  When I asked if there was an ingredients list online, she had no idea.  None.  Grrrr ....

So I took my (overpriced but convenient) coffee and left, with her wondering why I wasn't going to buy anything else from her.  Go figure.  I've since emailed the company to ask about an ingredients list, but I'm certainly not counting on a helpful response.  And I find it rather ironic that their online "nutritional information" directs customers to ask store staff for further information.  *meh*

Scary Sulphites?

As Hallowe’en approaches, I find myself faced with the problem of trick-or-treating with an anaphylactic child.  I’m not sure how I feel about this.  I don’t want to deny William the opportunity to go trick-or-treating, but I also don’t want to unnecessarily expose him to sulphites. This opens a whole can of worms about the extent to which parents should protect their kids from allergens ... but I'm not going to go there today.

I've thought about this for a while, and I think that the tactic we’re going to use is to keep a stash of unsulphited treats for him.  Once we’re all home from trick-or-treating, we’ll go through his bag of goodies, read labels, check anomalies online, and “trade” him Smarties (which I know are safe, and also his favourite) for the sulphited goodies.  It's not the best solution, nor perhaps the absolute safest, but I think it's the best compromise that will allow him the experience while keeping him reasonably safe.  And I'm beginning to come to the realization that reasonably safe is often the best we can do.

Educating the masses

Well, not really, but if the conversation at my work lunch table yesterday is any indication, it would seem that most people have no clue about severe allergies.  A discussion about food led to one about intolerances, which led to a discussion of the difference between an intolerance and an allergy, which led to a brief biology lesson (Mast cells, histamine, and allergic reactions), which led to "how do you do it?"

It seems that most of the people I have contact with understand that there is a significant difference between an allergy that causes uncomfortable and unpleasant symptoms and an allergy that leads to anaphylasis, but most have no idea what that difference is.  And there seems to be a lot of misinformation out there about what can and cannot cause an anaphylactic reaction.

I had to do an in-depth explanation, at Thanksgiving, as to why the after-eating-sulphites protocol for those of us who *can* eat sulphites exists.  We still eat them, within limits.  Food containing sulphites is only served with metal utensils on/in glass or ceramic dishes (less chance of the sulphites adhering to anything they shouldn't that way).  The person who's eaten the sulphites has the responsibility to ensure that their food (and utensils and hands and anything that may have touched the food) doesn't touch anything else.  Once they're done eating, their dishes go directly to the dishwasher (which I will immediately run) and they have to go wash their hands and brush their teeth (using the same do-not-touch protocol).  It seems a bit extreme, but it's the best I can come up with to still allow sulphites to be consumed in the house and protect William at the same time.  The point I made, when having to defend this process, was that an ounce of prevention (in this case, being very careful about cross-contamination) is worth a pound of cure (use of the Epipen and a trip to RUH's Emergency).

We have another family supper this evening, with a large number of fairly close family who aren't familiar with William's reaction to sulphites, so I think it's going to be a steep learning curve.  I'll be making buns this afternoon to take (so I know he can eat those) and will also make sure to bring some of "his" carrots, too ... I don't want him to feel left out (by not eating the same things as others), but I want to make sure that he's not going to eat anything, either, that'll make him sick.  Wish me luck!

Yam & sausage hash

I think this is my new breakfast favourite for fall weekends!  Bright orange yams, sweet onions, sausage, and eggs ... how could you go wrong?

Ingredients (per person):

1/2 lb jewel yams (~1 small)

1/4 lb breakfast sausage (ground or in casings, sliced)

1/2 sweet onion

2-3 tbsp chicken stock

1 egg

Shaved Parmesan cheese

Method:

Peel and cube the yams.  Place in a medium pot of salted water, then bring to a boil.  Reduce heat and simmer for 4-5 minutes.  Yams should be tender, but not overcooked.  Drain yams and set aside.

Saute sausage in a large skillet over medium-high heat.  Once the sausage has begun to release a bit of fat, add onion.  Continue to saute until sausage is cooked through and onions are translucent.  

Reduce heat to medium, then stir in yams.  Add stock, then pack hash down lightly and let cook (without stirring) for 4-5 minutes.  Bottom of hash should become brown and crispy.  With a spatula, carefully lift sections of the hash, mixing it, then lightly pack it down again.  Repeat until desired level of crispiness is achieved.  

Make a well in the hash for each egg, then carefully break the egg into the well.*  Cover and let cook until egg is cooked to desired level of doneness.  Sprinkle with shaved Parmesan, slice into wedges, and serve.  

Notes:

 

* If you like your hash with scrambled eggs, break egg into well, let cook until barely set at the edges, then fold the egg into the hash and repack it.

One eats, two eat, three eat, we all eat ....

We had an interesting conversation the other day after D. came home from getting groceries.  Walter had picked out Spiderman "fruit bits" (you know, the ones that contain lots of ingredients and hardly any fruit) as a snack for Kindergarten.  I rolled my eyes a bit--mainly because I'm such a fanatic about fruit-like things actually having to have fruit in them--but scanned the label and was about to put them in the cupboard when I saw the labelling change.  The only allergen warning for the "fruit bits" (and, no, I can't seem to make myself take the scare quotes away) was for SULPHITES.  *meh*

William was rather miffed, as he knew right away he couldn't have them, and I was a bit upset with D. for not having read the label in the store.

Then we stopped and talked for a minute.  It wasn't fair to Walter that he couldn't have the "fruit bits" just because William couldn't have them, but I didn't think it fair if Walter ate them in front of William, either (more because of the Spiderman thing than anything else).

So, the "fruit bits" are living in the cupboard over the stove (safely out of reach, as even I need a stool), and can only be eaten at school.  While I won't buy them again, D. may well as a treat for Walter, and that's okay, so long as William gets a treat he can eat, too.

I've thought about this for a while since, and I think that the moral is that, as a family, we'll make reasonable changes to our way of eating to eliminate sulphites (and to protect William from exposure to them), but that doesn't preclude us from eating things that contain sulphites ... and, you know, I don't think we should feel guilty about that.

Mountain bread!

So I was home from work for most of the week before last, as both boys had pneumonia. We ran out of bread and William, carbivore as he is, wanted immediately to make more. My usual multigrain recipe is in the bread machine as I write this, but I saw Beth Baker's recipe for mountain bread and figured I'd give it a try. Here are the fabulous results.

This has fast become a favourite around here.  I've made three loaves, and they've all disappeared within a day of being made.  Thanks for the recipe, Beth!

Cranberry Apple Chutney

Canadian Thanksgiving is tomorrow, and while we're not cooking a turkey this year (organic free range chicken, instead), I am making my usual chutney, tweaked so it's free of sulphites. I love the mixture of sweet and tart in this recipe, and it makes a phenomenal sandwich spread with either chicken or turkey.


Ingredients*:

1/3 cup cider vinegar
1/3 cup packed brown sugar
2 tart cooking apples (I used Macintosh)
12 ounces fresh cranberries (1 bag)
1/2 cup chopped sweet onion
1/2 cup unsulphured raisins**
1 tbsp orange zest or preserved organic orange peel
1 tbsp grated fresh ginger
1-1/2 tsp cinnamon
1/8 tsp ground cloves

Method:

Place first two ingredients in a medium saucepan over medium heat. Stir until sugar is dissolved. Add remaining ingredients and bring to a boil. Cook for three to four minutes (onions should be transparent), then reduce heat to low and simmer for 20 minutes.

If you like a fairly chunky chutney, leave it as is, but if you like a smoother one like I do, run it briefly through the food processor.

Makes about 2 cups. Keeps 2 weeks in the fridge, or can be frozen.

Notes:
* I use all organic ingredients, because this ensures no cross-contamination.
** I usually use golden raisins, but have only been able to find unsulphured Thompson raisins for the last month or so.

There's nothing as scary as grocery shopping

Well, not really, but grocery shopping has certainly changed for us. I used to waltz into the grocery store several times a week, decide on a whim what I wanted to make, quickly grab the ingredients, and be out the door.

Now grocery shopping at one of the major grocery chains is a bit like planning an expedition to a foreign country. Every item is scrutinized. Is it safe? If there's any doubt, it gets left behind. The risk is just too great.

I stand in each aisle for several minutes, reading fine print, comparing products, and often not buying anything. People must think me a bit batty. Labels are my friend, and my arch-nemesis. Does the product comply with the new labelling laws? Was it produced before these went into effect?

Even in the produce aisles, selecting things takes time. After a recent reaction where William had hives and eczema from one of his apples that'd *just* touched one of his dad's, I'm not willing to risk cross-contamination. So unless it's organic and bagged, I'm not buying produce from the major grocery chains.

Thank goodness, however, for the few local health/organic grocers in Saskatoon. I'm a bit more confident buying produce from them (although we just won't talk about the price of organic produce ... it's worth William's safety, and it's not like we can't afford it). Even so, I'm still an unapologetic label reader, but am learning that so long as it's certified organic in Canada, it can't contain sulphites (unless it's wine). Too, we're beginning to find organic brands and items that we like, so the kids know which granola bars, for example, they can pick from.

Many things, however, I've stopped buying completely. The days of buying baked goods in the grocery store are a thing of the past because William's had a reaction to sulphites in molasses. I've managed to find a brand of unsulphited molasses that works for us and doesn't have an huge difference in taste--it's Wholesome Sweeteners Organic Molasses. There's been a lot of experimenting with multigrain bread recipes over the last couple of weeks, and I think I've finally found one that's easy, that doesn't use molasses, and that (most importantly) we all like.

We're slowly adjusting to this new way of doing things, but weekends like this--Canadian Thanksgiving--I look somewhat wistfully at the major grocery chains, where I used to be able to get everything in one fell swoop. This morning, it'll be three or four stops (depending on what's in stock where) to get everything to make Thanksgiving supper ... but the fact that I'll be able to come very close to what we used to make (without even thinking) will be more than worth it.

OMG ... I left the Epipen at home!

Yep, that was me yesterday morning. Almost to the city on the way to daycare/work when I realized I didn't have the damned thing. Talk about instantaneous panic!

Rationally, I knew it wasn't that big of a deal because he'd be at daycare, where we've left an Epipen so I don't have to cart it back and forth. And daycare was the only place he'd be going (and eating) that morning.

The irrational, emotional part of me, however, was none too happy. And that nasty little internal critic kept up a running dialogue, all morning. How could I have been so stupid? I was definitely a failure in the allergy mommy department. And it went on and on until I literally was sitting in the truck on the way back to pick the boys up from daycare and had to yell "Shut up!" at the top of my lungs. Then it quit, thankfully ;-)

I'm used to carrying Ventolin and an aerochamber around with me, but they're not affected by temperature and so I just leave them in my rather large purse. The Epipen, being temperature-sensitive, sometimes gets taken out. And yesterday morning it didn't get put back in. In my hurry to get out the door on time, I forgot to grab it.

Now it, the Benadryl, the Ventolin, and the aerochamber have their very own home (much like this one) and I'll need to find something to put them in, as the whole container won't fit in my current purse ... and I should maybe find something to put it in, as I'm not sure my husband will be thrilled about carrying around a plastic container when it's just him and the boys.

Regardless, you can bet I'll be more vigilent about making sure I've got *everything* before I go out the door!

Tracking the cause

So, what caused William’s reaction?

William had a grilled cheese sandwich on multigrain bread, a few French fries, and some packaged, ready-to-eat grapes for lunch the day that he had his first serious reaction. Of these things, the only one that he hadn’t had before at that particular restaurant was the grapes, so that was where I suspected the problem lay.

The doctor whom we saw the day of the reaction said that his reaction indicated a food allergy and that, considering what he’d eaten, she strongly suspected a food preservative was the culprit.

The following morning I phoned the restaurant and talked to the manager. He was able to tell me who distributed the grapes and gave me that company’s contact information.

When I phoned the distributor, I discovered that the grapes were washed with potable tap water, then packaged. When I pushed a bit further, saying that I’d narrowed the source of the reaction down to the grapes, the representative with whom I spoke said, after a bit of thought, that all grapes were sprayed with sulphur dioxide prior to packaging and distribution.

A brief Internet search revealed that sulphites are one of the nine most common causes of serious food reactions in Canada. I was fairly certain, thus, that sulphur dioxide was the culprit, especially considering several cases of gastrointestinal distress that William had experienced earlier that month.

At the moment, William has only had one serious and three mild allergic reactions to food since the initial serious one. All have been to foods containing sulphites, particularly sulphur dioxide. We have an appointment to see a paediatric allergy specialist November 8, 2012, so we'll see whether we get a definitive diagnosis at that time. In the meantime, we're avoiding all sources of sulphites in an attempt to prevent further reactions.

First reaction

"This can't be happening," was the first thing that ran through my mind that afternoon.

We'd been out for lunch after going to the Vancouver Aquarium, when William said he had to go to the bathroom for the second time since starting lunch. He barely made it to the bathroom, where he had a serious case of diarrhoea. When I went to help him with his pants, I noticed that he had a huge scarlet splotch across his lower back. A closer inspection revealed more splotches and a growing number of hives.

Worried, I took William back to the table, where Grampa and William's older brother were still eating. I told them I suspected William was having a serious allergic reaction, and left them to quickly finish up and pay.

Once out at the truck, I dug out some Claritin (all that I had on hand) and gave him a dose of that. In the brief period of time between leaving the bathroom and giving him the antihistamine, he had more hives, and his face and neck had begun to swell.

His symptoms got worse--more diarrhoea, more hives, facial and neck swelling, tongue numbness--on the way to the medical clinic. We left the clinic with a prescription, clutched in my hand, for an Epipen Jr, in case of further anaphylactic reaction.

We lucked out with this first reaction, as the facial/neck swelling and tongue numbness had begun to subside by the time we saw the doctor. William had to have Benadryl every six hours for two days, but we didn't have to use the Epipen Jr.