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. 

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."

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

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!

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.