Allergist Appointment 2012

I can't believe that I never really got around to discussing Georgia's October 2011 allergist appointment, and now here we are having completed her 2012 allergist appointment.  Mostly that just means I've been busy (raising children, taking care of a baby, etc.), but I think it's also a positive sign that allergies don't mentally plague me on a daily basis as much as they used to.  At the beginning, when you get a food allergy diagnosis, your mind is swirling and there is a steep learning curve with many unanswered (and in some cases, unanswerable) questions to confront.  But as time passes, allergies just become a part of life like anything else.  So, I guess that is a good thing. 

Before we get into how this year's allergist appointment went, let me share a few bullets about other stuff.

• My father passed away in May.  Obviously, that's a whole other story (and one of the reasons I've had a busy year), but the reason I'm mentioning it here is that I believe it to be noteworthy that we survived a week of non-stop grieving food generosity without incident.  We traveled for the funeral and were staying at my parents' house. My parents' friends were unbelievably kind to put on a veritable buffet of homemade comfort food for days on end after my dad died.  It truly was amazing - and delicious.  Obviously, my first feeling about this was thankfulness.  However, I was quite nervous about the prospect of Georgia eating so many things prepared in others' homes.  Many people were nice enough to even ask about her allergies, but good intentions and loving care do not always translate to safety.  For example, when sesame seed buns were offered, someone thought that Georgia simply eating bottom buns only would work.  But with vigilance, and passing on pretty much all of the baked goods, everything was just fine.  I will admit that my safety standards were not as high as normal, but high enough I guess?  Or did we just get lucky?
  
  
• We made it through an entire school year without Georgia suffering any allergic reactions at school.  Woo-hoo!  Props to her teachers for so carefully reading all snack labels.  I'm thrilled that she'll be in the same classroom again this year with the same teachers.  (It's Montessori, so even though she's moving on to kindergarten, it is a mixed-ages environment.)  It's such a comfort to know that her teachers already know the drill.  Nevertheless, we still met with them a few weeks ago, because it never hurts to review emergency procedures and that kind of thing. 

• Minor gripe:  if the school in practice is storing her Epipens and Benadryl in a conveniently located cabinet in the classroom, why must they continue to have me sign an "official policy" that states all medication will be kept in a locked cabinet in the main office, accessible only by the principal and her designees?  I'm satisfied because I've seen with my own two eyes where Georgia's meds are stored.  But I know our allergist would not be happy with the thought of medication being locked up and not in immediate reach.  I've been led to believe that in some cases of anaphylaxis, an extra 15 seconds or 1 minute can be the difference between life and death.  Anyway, I'm biting my tongue on this one since at base I've already gotten what I want, but it always bothers me when policies don't match reality.  
  
  
• Earlier this month we went to the American Girl store in Chicago for the first time.  Overall, I was quite impressed with their allergy awareness.  (Of course you should use your own judgment, but I felt comfortable letting Georgia eat their food.)  When we booked the reservation online, there were boxes to check to indicate certain common food allergies.  I later called to speak to one of their customer service reps about Georgia's allergies and their allergen practices generally.  The only part I'd give them low marks on was communicating all of this to the server, because when I made sure to mention Georgia's allergies to the server, she handled it very politely, but clearly it was the first she'd heard of it.  I suppose from a practical standpoint that may have made absolutely no difference, but somehow it didn't instill a feeling of confidence in me about everything else they'd already told me on the phone.  I guess I assumed if you checked an allergy box on your reservation form that when you showed up there would be an allergy indicator next to your name or something.  Also, American Girl serves soy nut butter rather than peanut butter finger sandwiches, which is great.  However, I think they (or at least our server, perhaps I should say) are in the habit of nevertheless describing these in person as peanut butter sandwiches when setting them on the table.  I imagine this is to help the parents of picky eaters avoid any difficulties; call it peanut butter, and nobody asks questions (at least I assume that's the idea).  It caused our table to do a double-take, though, at which point the server corrected herself and we all chuckled mildly in relief.  Interestingly, Georgia still declined to eat any of them.  She really is unbelievably cautious at this age, at least when it comes to food, which is fine by me.  One more American Girl anecdote:  did you know that amongst their doll accessories, they sell an allergy-free lunch, including a faux allergy shot and medical bracelet?  We didn't buy one, but how cool is that?
   

I think it's a sign of the times that enough children have food allergies that a doll store would even have something like this available.  My first thought was, "Who needs this expensive set? We could fashion our own from stuff we already have at home."  I could see myself eventually deciding to treat Georgia to this, though, because in my view it's no different than the dolls with glasses, braces, or the ones in wheelchairs; every child just wants to feel normal and accepted for who they are. 

Wow.  Those were some seriously long bullet points!  Sorry for rambling on, but now I think I've got to go.  The allergist appointment summary will have to wait for a different post.  (And because I am too lazy to change it, this post will now have the most poorly selected title ever!)

Until next time...take care!  

Allergy Dad Confession: Cookie

Okay, that post title is a misnomer, because it's not really a confession when someone else is doing it for you. I think it's more like tattling. Whatever.

Georgia's preschool teacher sent her home with a homemade star-shaped cookie to celebrate the 4th of July. (Aside: people often do not get it why allergic folks are so wary of others' home baked goods. I know they mean well. I'm sure the teacher, who of course knows of Georgia's allergies, gave it to her thinking that it was safe. I'm guessing she'd be surprised and not totally get it if she heard that we still wouldn't let Georgia eat that thing. I'm just glad and amazed that in this instance Georgia didn't immediately gobble it up.)

Anyway, the point of the story is that not knowing more about the ingredients or the cross contamination risk from this woman's kitchen, we did not allow Georgia to eat the cookie and instead threw it out, or so I thought, but then I later found my husband standing at his dresser munching on it. You little devil, you! I guess he just can't let a good cookie go to waste!

Eggs, and Preschools, and Birthday Parties, Oh My!

There's quite possibly nothing more boring to read than blogging about blogging, but please bear with me for a moment. The problem with this blog is that I don't get around to posting my occasional post-worthy allergy thoughts, so they accumulate. After time passes, none seem important enough to post, or maybe they do, but then it's too daunting to write them all up, or I worry that it will all come across like I'm allergy obsessed because suddenly I have 6 allergy posts in 6 days? I don't know - clearly I'm over thinking all of this and just making excuses for what boils down to procrastination, so with no further ado, here is a dumping of some of these accumulated thoughts, boiled down as best as I can get them:

FAQ: How is the introduction of baked egg going?
Short answer is that it's going great - Georgia's been tolerating homemade baked goods without any reactions. Longer answer is that, as exciting as it was to be able to get started on introducing eggs to her diet, we've fallen off course in terms of following the doctor's protocol for introducing more and more egg. We haven't yet jumped on to the pancake step, because how am I supposed to think of recipes for getting her up to 1/4 of an egg per serving in her tummy three times a day? No, really -- that was a serious question -- does anyone have any suggestions? A serving of cornbread really only has about 1/8th of an egg at most, so I'd have to double the portion size and serve it at breakfast lunch and dinner to get us there. With cupcakes, I'd have to give her even MORE, because each cupcake would have less egg. I'm about ready to say screw it, things have been going fine, let's move on and try the pancakes.

FAQ: What is the rationale behind the introduction of baked egg? Is the idea that she is building up a tolerance to eggs?
Good question, but no, it's not about building up a tolerance to eggs. My lay person's way of explaining this is that baking the eggs at a high temperature ever so slightly changes the shape of the protein that she's allergic to, just enough that when she eats it her body no longer recognizes it as an allergen (i.e., her immune system stops treating the food in question as a dangerous invader that it needs to fight). I'll post a link to the relevant study sometime.

Ugh. Preschool.
Georgia will be old enough to attend in the fall. Aside from anxiety I have about taking that next step of having to trust Georgia and a bunch of other people (teachers, kids, etc.) to keep her safe, I've also been dreading just having the allergy conversation with the folks at the preschools we've been touring. Well, she got accepted to one, and the way it works is you accept and say you're going to attend while you wait to hear back from the others -- apparently this is pretty standard around here. So, we had our first allergy conversation with the preschool that she is, as of today, supposedly attending. (Can you tell I still have my fingers crossed about coming off the wait list at another one? For geographic proximity reasons, that's all.) I'll be positive here and say that the conversation went about as well as one could hope for. The woman giving the tour assured us that it would be no problem, that other children at the school did have food allergies so they were accustomed to dealing with it, and that we could leave EpiPens in the school office or with the classroom teacher, etc.. On the other hand, I have to be honest and say that even when given a pretty good answer, I felt like there was no possible way this woman could understand the fear that an allergy parent has. Because even when EVERYONE (parents, teachers, etc.) all have the best intentions, people sometimes make mistakes. I couldn't help but see the bowls of snack mix in the kindergarten classroom that we walked by and just start to worry. Georgia will be barely 3 years old when she starts preschool. Can I really hope to drill it into her head that she cannot share snacks with other kids? I think they have "snack parents" at this school that trade off bringing food in for snacks. I am hoping that we can get Georgia on a regime of just eating her own personal food rather than the provided snacks, even though the snack parents will be told not to bring things with nuts. Partially because in my opinion I can't really ask them to look out for any ingredients including nuts, fish, and sesame. (Although, how many preschooler snacks have a fish ingredient, right? I wonder about all of the DHA (fish oil) that's getting added to more and more things these days, though. Not sure if Georgia would have a problem with that or not.) But if we have Georgia just eat her own food, then will all of the other parents question why they're even being made to have to deal with my kid's food allergy and therefore just stop reading ingredients? (If she were in 4th grade, that might make sense, but I think at the preschool level it's still important to keep all those sticky pb hands and nut-crumbs, etc. as far away as possible - there's too much risk of contamination and sharing.) Is it time for me to just start trusting a little more, even though that might mean exposing my child to greater risk? I want to protect her (as any parent would). I have to balance that against the idea that I can't protect her from everything forever. Ugh. You can see I'm already going around in circles about this mentally. Broken record here, but can I just say for the one millionth time that it sure would be nice if a test for the severity of my child's allergies existed, so that I might only have to worry that she'll get a mild case of hives at school rather than worrying about something potentially fatal.

Other allergy parents
I feel comfortable discussing food allergies in this forum, but generally speaking I'm uncomfortable with it as a conversation topic. I guess I'm insecure, because I always assume the other person I'm talking to is judging me in some way - either judging me for having a child with food allergies (i.e., they must be assuming it's my fault!) or judging me for how I'm dealing with it (i.e., they probably think I'm being overprotective!). At a recent birthday party, though, it occurred to me that I'm perhaps even more uncomfortable and insecure about discussing food allergies with other food allergy parents. Isn't that awful? Aren't these the very people that should understand where I'm coming from the most? Yes, that is true. And I'm always happy to find them, except that there's no handbook for how to deal with children's food allergies, so I'm always a little bit dumbfounded as to how to address the fact that we don't all deal with allergies the same way. Perhaps the issue is that no one's way is the one and only "right" way, and yet I just so want to be doing the "right" thing, whatever that is. So anyway, at this particular birthday party, the allergy mom was allowing her peanut and tree nut allergic child to dive right into a bakery-bought cupcake with crumbled chocolate cookie as a topping while I was making Georgia have some more fruit and promising her that we'd get her a special treat later in the day instead. (I know, I'm horrible - I really should start bringing my own stuff to these parties, but I keep forgetting and then it's time to head to the party and we're usually running late already. Fortunately she's just young enough to still not really care about missing the treats, so I've been getting away with this.) I just sat there watching this other kid with her cupcake wondering, "Am I doing this all wrong? Am I being too uptight?" The mom in question happens to be a work friend of mine, so I was able to ask her whether her child still had food allergies. Answer - "Yes, but her allergies aren't severe - it would just be like hives or something. " Hmmm...already a different response than what our allergist would ever say. So I said, "But doesn't it make you nervous that one reaction isn't really predictive of the next? You know, that it could be hives last time, but um, something far worse the next?" (Don't want to say anything too terrible around the kids!) Answer - "I didn't know that. Our allergist never told us that." Hmmmm....for various reasons, I already had the impression that their allergist isn't the best. (My friend had even told me as much before.) But this is all very frustrating to me! Why aren't the allergists telling everyone the same set of information? Let me just tell you the two conflicting thoughts going through my head at the time: (1) Ugh! Other allergy parents that are not as vigilant as us are not helping our cause (see preschool discussion above). If she's walking around acting like possible nut ingestion is no big deal (she actually wants to try to "build up a tolerance" for her daughter by exposing her to more and more nuts (at home), despite her allergist having told her that that's not a good idea right now and her husband disagreeing with her as well), then how am I supposed to get other parents and school officials that come into contact with folks like her to understand that when my kid shows up, I expect them to take the whole allergy thing much more seriously?, and (2) Maybe she is the smarter one here. Because maybe if we look at our lifetime happiness levels, and the lifetime happiness levels of our children, her approach of being WAY more relaxed about food allergies and less protective will result in so much less anxiety and mental stress for her and her family that any medical consequences of the increased number of allergic reactions potentially resulting from her approach will be outweighed by the fact that they just didn't worry so much! I mean, I can guarantee you that she's not off thinking about this birthday party right now, writing a blog entry about it! : ) Maybe this is a case where ignorance really is bliss.
Anyway, it's like I want to go with conclusion #2 and just relax, but I can't get my mind to stop slipping back to the, "Yeah, that's all fine and well, but what if she DIES?" thoughts. You know what I mean? Ugh. Again, have I mentioned lately my annoyance with the fact that they cannot yet test for the severity of one's allergies?

Another reaction
Last week I picked up a loaf of bread at our neighborhood food co-op. The ingredients passed inspection, but Georgia ended up having a minor (skin) reaction to it. We think it was sesame, because other available loaves did include sesame as an ingredient. I feel like I should've known better, like my gut was telling me at the time not to buy the loaf because of those other loaves. But what does this mean? That we can only buy from national producers that can give me a better allergen statement, and we can never buy the farmer's market type stuff? Maybe. I don't know. I'll be doing a separate post later on my frustration with labeling.

Okay, that's enough dumping for today.