Monday, March 21, 2011

Explaining my Absence

It's been a while since I updated this blog, so much so that I feel the need to explain my absence. Here's the answer: Don't take this the wrong way, but sometimes I just get bored of food allergies. (To the other food allergy sufferers or food allergy parents out there: do you?)

As a parent of a food allergic child, there's a certain amount of continuing education that must go on, or else you'll be totally out of touch with medical advances, legislative changes (that affect things like your child's school experience, or food labeling), etc. This is especially true because even the best allergists in my opinion do not equip patients and parents with all the information we need to get by; there is a lot of patient "self education" that we're left to take care of on our own. But on the other hand, my real goal is just to go about living my normal life, allowing my food-allergic child to go about living hers, not thinking about food allergies any more than we have to. So, while advocacy and education in the food allergy community is invaluable, it's also something I just have to step away from now and then. If I read (or write) too much about food allergies, it can have the effect of overwhelming me, or sometimes getting me down or just plain scared, rather than empowering me, which is supposed to be the intent.

Anyway, I also take my boredom with the subject of food allergies to be a good sign that our family has been very, very lucky in recent months. (knock on wood.) Only when you're not dealing with actual allergic reactions can you indulge in not focusing so much on food allergies. It seems almost paradoxical, but I think our vigilance has allowed us to be more relaxed. It's always a balancing act, though...I don't want the pendulum to swing from relaxed all the way over to lazy or careless. But I fully admit that a lack of reactions can have that effect; our family gets too comfortable and starts taking more chances, making more assumptions about food ingredients that we shouldn't.

(Oh, also, I'm pregnant, and that's such a good excuse for so many random things that I might as well put it forth here as another reason that updating this blog has not been top priority.) : )

So, had I had the urge to update this blog in the last few months, here are a few things I would've posted on: (skip this if you's about to get really long as I brain-dump)

  • Ugh. The comments. When will I ever learn to NOT READ THE COMMENTS to allergy articles in main stream media? They are filled with hatred. I made the mistake of reading the comments to the December news of a Chicago Public School student's allergy related death. The allergy community stepped up with heartfelt responses and offers of support. But many others were screaming that the family was to blame, because they should've just homeschooled their child. I hear this sentiment a lot, but there's no winning. If you go out of your way to protect your food allergic child, then you are considered a zealous freak who needs to just relax and not make such a big deal of your child's allergies, who just needs to realize that allergic children can't grow up living in a bubble or they won't be prepared for living in the real world when they grow up, yada yada yada. But if you put them in public school, well then you're subject to potential shouts of "don't make your problem my problem" from other parents, or "you should've homeschooled" if something goes wrong. That's frustrating. With all due respect to families that for whatever reason have decided that homeschooling is the best option for their child, I do think that access to a public education and a safe classroom for my child is not too much to ask. The types of things I would even consider asking my child's elementary school to do in light of her food allergies are all (in my opinion) very "reasonable accommodations" under the ADA. If you can build a wheelchair ramp, offer a special ed class, and bring in a speech therapist, surely you can also keep my child's Epipen accessible, train teachers to use it, and consider keeping food in the cafeteria rather than the classroom?

  • There was this whole brouhaha about a district in Florida where parents protested food allergy accommodations that one family had requested. Honestly, I don't know enough about it to have a strong opinion, because I've been tuning out the news so I don't know what the family asked for exactly. But it was so bad that FAAN had to get involved to help educate the parent population and the school board, and suffice it to say that the sentiment coming from the protesters was not very compassionate (e.g., "My child is special too!"). Read all about it here if you want.

  • Back in December, the Wall Street Journal (amongst other publications) ran an article about the National Institute for Allergy and Infectious Diseases having issued the first clinical guidelines for diagnosing and treating food allergies. (Hello? It's about time.) It explained why relying on blood and skin tests alone is not sufficient. This was not news to me, and should not be news to anyone dealing directly with food allergies, but unfortunately I think it is. Too many doctors (generally speaking, pediatricians, as opposed to allergists) have not been properly educated about how to correctly identify food allergies, and this results in misdiagnosis and over-diagnosis, with families avoiding foods for no good reason. As someone who once had to put my daughter on an extrememly restrictive diet based on a simple blood test while we waited for two months to get an appointment with the allergist, I can certainly relate. Even after Georgia was seen by the allergist, she was left avoiding foods for quite some time that we were later able to add back into her diet. (Poppy seeds and green beans (all beans, for that matter) were once on our list. And they shouldn't have been. What a pain for us, and what a burden to put on others interacting with or caring for my child. I also felt it distracted from the significance of her real allergies to have all of these other foods coming on and off the list. How is someone supposed to trust me that she's really allergic to sesame, if just last week I told that same person "no beans!", but then turned around and said, "never mind"?) So, the article made some valid points, and I think the accompanying graphic did a good job of visually explaining the difference between proper and improper diagnostic procedures. Certainly there is still room for improvement in allergy testing, and I hope the scientists are working hard on that! The downside of the article (and similar articles covering the same topic) was that there was disproportionate focus on the false positives/over-diagnosis issue. Which only leads to more of the general public thinking, "food allergies aren't real," or, "is your daughter really allergic to nuts?" That sentiment gets annoying. For every person that asks me, "Why are there so many food allergies now, when no one I knew in the 70's had allergies?" I feel like half of them are genuinely curious with no ulterior motive, and the other half are secretly thinking, "I think a lot of these so-called allergies that people are being told they have are just fake. Are Georgia's fake?"

  • My in-laws successfully watched the girls at their house for 3 nights while Joe and I went on vacation, and the weekend passed without allergy incident! Woo-hoo! This was a big milestone for us as parents to cross. I hope we didn't annoy Joe's parents beforehand with too much information and instruction, but I warned them that we'll do it again every time. : ) I'm so glad it went well, because it helps us build trust (not just with them, but with ALL other caretakers), which is something that we have to be willing to do in order to give our daughter a normal life. But I'm not gonna lie - I was anxious about it beforehand. (Which, don't misunderstand - had absolutely nothing personally to do with my in-laws. I had complete confidence in them but was nervous nonetheless.)

I think that's enough for now! I hope I didn't bore you too much in the process, because I think I'll be writing here off and on more regularly for a while now that I've come off of this 3 month hiatus.


Heather said...

Congratulations, Kate!

Oh, yes, I get tired of allergies. I get tired of answering questions, of sharing stories, of sharing recipes, etc, etc. I especially get tired of, "I don't know how you do it!" exclamations. I do it because I have to do it. It just is the way it is.

Sarah said...

Welcome back and congrats on the pregnancy! :) I was just thinking about you as we're getting ready for kindergarten registration (kind of scary to send her off to strangers) and another round of allergy testing coming up!
Glad to hear all is well!

Sarah said...

Kate - I was hoping no news was good news, and it sounds like it has been for the most part. I agree, the pressure from other parents is ridiculous - as if it isn't hard enough. Homeschool your child? As if you're demanding that the rest of the world subsist on rice and carrots because it's safest for Georgia. And how about teaching their children sensitivity to other kids' needs. Wow.