Tuesday, May 21, 2013

The Great Unknown

With food allergies I battle a fear of the unknown.  I dread walking into new places, experiencing new situations, and meeting new people because I don't know what we'll be facing or how others will react.  I don't like not knowing what the outcome will be.

I'm terrified of others cooking for us.  I don't know how conscientious they are.  I don't know how aware they are of cross contamination.  I don't know if they truly understand the severity of food allergies.  I don't know how well they can read labels.  I don't know what their kitchen is like and how clean it is. 

I am always afraid that an ingredient on a label will be missed.  Not all foods have large allergy labels or lists of common allergens.  I'm afraid that I won't know one of the alternative (and tricky) names of our allergens.  I'm afraid of foods that aren't labelled, which is why I don't like anything homemade.  I just can't be certain of what's in a product. 

I don't know what it's like behind the scenes in a restaurant kitchen.  When I'm assured that Bee's food will be cooked separately and that they've handled allergies before and that I shouldn't worry, I still do.  I don't know how aware all the chefs and cooks and servers are.  I don't know if our specific instructions will get lost in translation as they are passed from person to person.  I don't know if they are following every precaution. 

But most of all I fear not knowing all of Bee's allergens  Many of her allergens we've discovered through trial and error.  That's never a good way to discover allergies.  We've tested multiple times and tried hard to avoid foods that are cross-reactive, but some of her foods didn't show up on tests and some of her allergens took us by surprise.  We've had ER visits that taught us new allergens and made our list longer. 

I have so much fear that we still don't know her full allergy list.  What if there are more things?  What if we're missing something?

I also fear that Bee will develop new allergens.  I fear that the doctors will not know the best course of treatment.  I fear because there is no cure.  Food allergies are really an unknown.  No one can explain the significant rise in food allergies over the years.  No one has found a cure or even a reliably effective treatment.  No one child's food allergies and symptoms are like another.  There is just so much unknown in the world of food allergies.  And walking in the unknown is scary. 
fear of the unknown

1 comment:

AnnaPK said...

It has begun to drive me a bit crazy that there is no treatment course for FAs!!! There is testing, which as you mentioned is rather unreliable, other than that the only thing to do is AVOIDANCE.
I get really down sometimes thinking about all the experiences H is missing out on because of his allergies. My older two have no FAs and got to go and do so much more, and other people took them places all the time at this age.
Thanks in part to you though, there are lots of delicious treats he CAN have. Right now your chocolate chips muffins are in the oven. This time I switched chocolate chips for blueberries and H is mad that they are still cooking. :)
Thank you for sharing your world!

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