Another reaction ....

*sigh*  It seems that we just get a handle on things, then something else happens.  William was at a birthday party on the weekend and ended up having a reaction to the birthday cake.  Thankfully, while unpleasant, it was relatively minor.  But the problem we run up against, again, is labelling.

Theoretically, it should have been okay, as he hasn't had reactions to anything previous to this to things (other than sulphur dioxide) that were present in concentrations under 10 ppm.  That's now changed, as while there were no sulphites explicitly present in the cake, there were ingredients (which I normally avoid at home) that are either exposed to or contain small amounts (under 10 ppm) of sulphites.  So we're going to have to be even more vigalent to make sure that he's not getting those things, either.  Until I can determine the specific culprit, I think we'll be bringing more of our own food to events like these.

Who knew .... ?

So, apparently in-store made items do not necessarily have to have sulphites listed in their ingredients.  Ask me how I know this ... you know you want to.

Products that are produced and packaged (in bulk) in-store are exempt from ingredient declaration (see A16), which means that the bread cubes I used for the stuffing in yesterday's turkey didn't need an allergen label, this despite the fact that these cubes are the only logical source for the (thankfully) minor reaction that William had after supper last night.  *sigh*

I'll admit, I was in a hurry and used what I had on hand in the freezer.  I did check the label, but assumed because there wasn't a "contains ..." statement that it was okay.  If I'd have been thinking, I'd have noticed that the package didn't list "Contains:  wheat," which should have put up a warning flag.

Regardless, he's fine today, but I'll be making my own bread cubes from now on, too.

Unexpected complications

It's been a crazy month, during which William's broken his arm, then had surgery twice on it (once in Phoenix, the second time here in Saskatoon).  There's nothing quite like having to explain, repeatedly, to health care professionals  (1) what sulphites are, (2) what sulphites are in, and (3) what happens when William is exposed to them.  Oh, and then there's having a discussion with your husband, who's in a different country in the ER with William, about what William can and cannot have to eat.  Oy vey!

So the pins come out and the cast comes off in four days (not nearly soon enough, in William's mind), and we're slowly returning to normal.  But I'm left thinking that there's a knowledge gap when it comes to sulphite sensitivity , especially when I've had more than one medical professional look askance at me when I explain the difference between sulphites and sulphates, and that William's had anaphylactic reactions to the former, and not the latter.  Anyway, there's definitely a gap in the knowledge base about sulphite sensitivity, a gap that really deserves to be filled, one way or another.

And we've managed through almost a month of crappy eating, injuries, illnesses, and travel to not have a single sulphite-related reaction.  W00T!  Let's hope that we see more of this in the future (crossing fingers).

Getting ready for school

It might seem a bit odd, but I’m already beginning to think about September, when William will enter Kindergarten.  There are a million questions and concerns racing through my mind, and I’m feeling a bit discombobulated, trying to figure out which of these should take priority. 

Unlike other provinces (Ontario and British Columbia), Saskatchewan doesn’t have  policy or set of regulations covering anaphylactic children in school settings.  Prairie Spirit School District does have guidelines for administering an EpiPen (or other necessary medication) to students, and has guidelines for dealing with anaphylactic children in the school (see section JFL).  That being said, we’re not dealing with an allergy that most people are familiar with.  The school is peanut- and scent-free (which I’m not going to get into, here), but it’s inconceivable, because of the ubiquity of sulphites, for this to be an option for William. 

I’ve already had a preliminary discussion with his classroom teacher, and will schedule a meeting with her and the principal for later this spring.  In the meantime, the dearth of readily-available (and understandable, which is a whole different issue) information on sulphites and sulphite-sensitivity is presenting a bit of a problem.  Sounds like a fact sheet might be in order. 

Bundt pan banana bread

Bundt Pan Banana Bread

This recipe is a staple in our house, and always made in the bundt pan.  Best served warm, and even better with peanut butter!

Adapted from The Best of the Best and More.

Ingredients

• 1 cup organic, unsalted butter, room temperature
• 2 cups organic white sugar
• 5-6 mashed ripe organic bananas
• 4 organic, free range eggs
• 2-1/2 cups organic no-additive unbleached white flour
• 2 tsp organic baking soda
• 1 tsp sea salt
• 1 tsp freshly grated organic nutmeg

Instructions

1. Preheat oven to 350F.
2. Cream together butter and sugar in a large bowl.
3. Add bananas and eggs.  Beat until mixed well.
4. Mix dry ingredients together in a medium bowl.
5. Add dry ingredients to banana mixture.  Be careful not to overmix.
6. Pour into greased bundt pan (or two greased loaf pans).
7. Bake 50 to 55 minutes.  Test for doneness before removing (toothpick in middle should come out clean).  
8. Cool on rack for at least 10 minutes before removing.  
9. If freezing, cool completely, then wrap tightly in plastic wrap before freezing.

Pumpkin cranberry oatmeal muffins

We're completely out of baking at the moment, primarily due to the nasty stomach bug that's laid all of us up for the last ten days.  Yuck.  So it's time for an über-baking morning.  On this morning's list is banana bread (recipe to come later), multi-grain bread and buns, shortbread cookies, and pumpkin cranberry oatmeal muffins (made with the last of the pumpkin puree I made in December ... of which I will make much, much more next year).

Pumpkin Cranberry Oatmeal Muffins

(adapted from The Kitchen Magpie)

Makes 12 muffins

Ingredients

• 1 cup of organic pumpkin puree
• 1/2 cup packed organic, unsulphured brown sugar
• 1/3 cup unsweetened organic applesauce
• 1/4 cup water
• 2 eggs
• 1 cup organic stone ground red spring wheat flour
• 1/2 cup steel cut whole flake organic oatmeal
• 1/4 cup ground organic flax seed
• 3/4 cup organic cranberries (fresh or frozen)
• 4 tsp organic, non-aluminum baking powder
• 1 tsp organic cinnamon
• 1/4 tsp organic ginger
• 1/4 tsp grated fresh organic nutmeg
• pinch organic cloves
• 1/2 tsp sea salt

Instructions

1. Preheat oven to 350F. 
2. Combine dry ingredients in a large bowl.
3. Mix eggs, pumpkin, water, applesauce, and brown sugar in a medium bowl until well blended.  Do not overmix.  
4. Fold in cranberries.
5. Make a well in the dry ingredients, then add the wet ingredients and mix just until combined.  
6. Pour batter into a greased muffin tin.  Note:  Do not use paper liners, as these muffins will stick.  
7. Bake 18 - 20 minutes, until tops spring back lightly when touched.  (If using whole wheat flour, decrease cooking time to 15 - 17 minutes.)

Reaction? Stomach bug? Argh ...

William had an episode of major gastrointestinal distress late Thursday evening, to the point that I couldn't even get Gravol to stay down.  We limped through the night--nine loads of laundry later--and he managed to sleep a bit.  The boys had eaten out with D that evening, so my first suspicion was an allergic reaction to sulphites.  Thankfully, this wasn't the case, as it seems that all four of us have the same bug now, but it did get me to thinking.

Before, my first reaction would've been to give him Gravol and Kaopectate, then check his temperature and keep him clean and comfortable.  Now, I'm immediately giving him Benadryl, then watching him like a hawk, waiting to see if it's just a GI bug, or if it's something more nefarious, requiring constant watch to ensure that it's not the beginning of an anaphylactic reaction.  I feel like I'm over-reacting, but I need to keep him safe ... and there seems to be a constant war between the two, which is a bit uncomfortable, to say the least.  Where do you draw the line between rationality and obsessiveness?  I don't know, at least not right now.  We seem to be making the rules up as we go.  I just hope we're making the right ones.

No outside food policies

Our local rec complex has a policy that no outside food be brought in.  I understand the motivation for it, even though I don't agree with it, and know that it's caused a lot of divisiveness within the community, especially when it comes to supplying stuff for hockey tournaments.  We're getting everything organized for our pre-novice hockey tournament in March, and the policy came up at the parents' meeting.  I hadn't really thought about it before then, but this is certainly something I'm going to have to deal with (and probably not just at our rec complex, now that I think about it).

We've had a few reactions from food others have prepared, things that they've assured us are "safe."  I'm sorry, but that's something I'd prefer to verify for myself, and am to the point that unless I've read the ingredients list myself, William just doesn't get to have it because it's not worth the risk.  I did say to my husband, who's on the board for the complex, that I have no intention of following the policy for William when we're there ... it may cause some consternation, but as far as I'm concerned, my child's safety comes first.  I'm going to be polite and discrete about it, but I'll make sure he has what he needs, just as I've done at every other hockey game and tournament we've been to this year.  And I'm thinking that I'll have a conversation with the manager, who I don't think will have a problem with it, considering why I'm asking.

Must plan more better

Okay, so the bad grammar is deliberate, showing just how flustered and frustrated I was last night.  But, bad grammar aside, I really do need to plan better, especially mealtimes for William.  Eating at home is one thing, but those few occasions where eating outside the home is a necessity, I really do need to take a look at my planning strategies and improve them.

Yesterday was William's first Tae Kwon Do class for the winter session.  It's right a 6:00, which is a bit of a pain because I need to make sure he's eaten before we go.  Yesterday I got tied up at work, didn't manage to leave when I'd planned to leave, and was faced with the sudden conundrum:  what am I going to feed William?  In the past, we'd have bowed to the pressure of the golden arches (a.k.a. McDonalds) and gone through the drive-through on the way across town.  Since William's now had three back-to-back reactions to their fries, that wasn't an answer.  My original plan had been to take the boys to one of the family restaurants I know is okay, but we didn't have time for that.

We ended up eating at Tim Hortons, which wasn't something I'd really wanted to do, but was the only safe and fast alternative.  I can see, though, that it'll not be on our list too often.  Dealing with a new cashier who spoke English as a second (or third?) language can be frustrating enough.  Dealing with one when you're trying to ensure that your allergic child doesn't get exposed to the substance(s) he's allergic to is something else entirely.  I'm sure she thought I was a bit awful, but calling over a manager who spoke better English to ensure my child was going to be okay was a necessary evil.  And somehow I think a little embarrassment is the lesser of the two evils when the other evil is a potential anaphylactic reaction.  

Argh ... read the labels!

We can't seem to survive an event outside the home without some sort of a reaction problem, and yesterday was no different.  We had a family birthday party to go to, so I made sure William had eaten before we went.  Cake's usually not a huge problem, so I wasn't overly worried about that, and he was more interested in playing with the toys than eating.

That was until he saw that dad had Cheezies.  As he ate one, I asked if D had read the label.  Oh, no ... he didn't.  Cheezies (in their various brands and iterations) are a big problem, as almost all (except the Cheese Puffs variety) have sulphites.  So while I dug around for a pre-emptive dose of Benadryl, D and his brother went searching for the bag.  Yep ... sulphites.  

At home, it's not really a problem because I only let a few things (which we *know* William can't have) into the house that have them.  Out, it's different, and D's not really used to, at least yet, having to read labels and be conscious of ingredients.  I think that's the difference between growing up in a house with allergies and growing up not having to deal with them.  Plus, sulphites are odd (especially since they're not technically an allergy), so different things and different levels can cause a reaction.

On the plus side, William wasn't too much the worse for wear.  He did have a tummy ache last night and this morning, but seems to be okay now.  Here's hoping, though, that we all remember to read the labels the next time that we're out.  *sigh*

Fast food woes

I came to the realization, over the Christmas break, that fast food is no longer an option for us.  William has had four significant (although not anaphylactic) reactions to fast food over the last several weeks, all of these to frozen French fries.  Checking the companies' websites has revealed nothing, I suspect that the culprit is sulphites in the citric acid (sulphites are used in the process of producing citric acid), so we'll be keeping a better eye on citric acid-containing foods, too, to see if these are causing a problem as well, or if it's just specific kinds/brands of citric acid.  At this point, who knows?

Also, there seems to be some research to back this up, specifically this paper, along with several others. In the meantime, it's rather unlikely we'll be eating any fast food until I can get this sorted out.  On the plus side, it means we're eating far, far healthier than we had been.  

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*