Tuesday, October 26, 2010

Allergist Visit (and answers to some questions)

Our first visit to Georgia's new allergist was great! We all really liked her, including Georgia.

I can't believe how positive I felt after this appointment, considering that at the end of the day, nothing has really changed for us so far. We'll have to wait 7-10 days to get the RAST score results from Georgia's blood work, and even then I'll be surprised if she's eligible for any food challenges. Still, though, this doctor just spoke so positively about all of the research that's being done in the field of food allergies that it was the first time I've felt like there's real hope for a cure, not in the esoteric "someday" sense, but truly in the "Georgia won't always have to deal with this" sense. (Maybe even by high school!) For any food allergy sufferer, I'm sure that would be happy news. For a mother, the thought is enough to make one burst into tears of joy. (I didn't. I'm just sayin.)

Anyway, we asked some questions (some of which are frequently posed to me by friends or family), so I thought I'd share the answers. (The nerdy lawyer in me is now compelled to remind you that I'm just relaying what I heard, and that no one should follow this advice but should instead talk to a doctor about your individual circumstances.) Also, all of the answers below have been paraphrased and elaborated on to my heart's content.

1) The EpiPen temperature and light control issue. Official guidelines recommend keeping the EpiPen between 76-78 degrees and out of direct sunlight. This is tricky when you live in a place with temps ranging from -10 to 110. I know some people who keep their Epi in a cooler all summer when they go out. Others have been told to keep the Epi in its original cardboard box so as not to expose it to too much light. What are we supposed to do?

Our allergist's answers:
Temperature: She tells people to take it with them, and that if they're comfortable, the Epi is comfortable, and not to worry about it too much. So basically, I took this to mean don't leave it in your car's glove box (duh), but you don't need to stress if it's 90 degrees out and you're heading to lunch. Based on her answer, I won't be worrying with a special case for the Epi unless we'll be somewhere very hot or very cold for an extended period of time. Beach day? Yes. Quick trip to the park on a hot day? No.

Light: No, you do not need to keep it in a cardboard box, or a bag, or otherwise strive for darkness. The idea is to not leave it lying in direct sunlight, but carrying it around in the plastic green carrier it comes with should be fine. In other words, it's not going to go bad in light the way that exposed film would.

2) Labeling. We were looking for greater clarity about whether to avoid all foods made on shared equipment, or "made in the same facility as," and that kind of thing. We asked this question knowing that there's no "right" answer, but I just wanted someone to tell me what to do! Plus I wanted to know that the answer is based on facts and reasoning. (To elaborate: I feel like we have been living a double standard, because we never bring foods labeled this way into our home from the grocery store, and yet when we do occasionally eat out it's not like I'm asking to see the packaging of the bread that Georgia's sandwich is made on. So while I know, for example, that that bread doesn't contain nuts or sesame (because I asked the wait staff), I can't tell you that it wasn't "produced in the same facility" as another food containing her allergens.)

Allergist's answer: We can serve products that do not contain Georgia's allergens (peanuts, tree nuts, sesame, fish and shellfish) in the ingredients list but are labeled as having been produced in the same facility as those allergens. We should not serve products that are labeled as having been produced on the same equipment as those allergens. (Also, we should not serve products labeled as "may contain" or "may contain traces of" with respect to Georgia's allergens, but we were already clear on that.) The doctor did not know of any good statistical studies about the number of allergic reactions stemming from foods that supposedly did not contain the offending ingredient but were labeled this way (as "same facility" or "same equipment"). However, she did say that she has had patients who have had serious reactions to "shared equipment" foods.

3) What about June? June has eaten eggs, but she has not had any nuts, sesame, fish or shellfish, simply because we don't typically have those foods in our home. So far she has displayed no signs of food allergies. We were wondering whether she is supposed to continue avoiding those foods because we now have a family history of allergies? Or when are we supposed to introduce them?

Allergist's answer: The long and short of it is that before sending June to an environment like preschool (2 years from now), we'll need to know for sure if she has any food allergies. However, we shouldn't really introduce June to Georgia's allergens until we're prepared to make those foods a regular part of her diet, because there have been cases of people eating a food so infrequently that they essentially develop an allergy to it. (I don't think researchers are 100% clear on the science behind this causation concept, or where allergies come from generally, so don't ask me to explain it, but apparently insofar as it relates to how we are to treat June, this is the prevailing wisdom for the time being.) The allergist told us about families where 1 parent has to go on a weekly peanut butter date with the non-allergic sibling just to make sure that the non-allergic sibling continues to be able to eat peanuts.

It's a big sacrifice, I know, but I will go out on a limb now and say that when the time comes, I'll go on a weekly date to eat Reese's cups with June. : ) It would be a needless hassle in our daily lives right now to incorporate nuts, fish, shellfish and sesame into June's diet when the rest of us aren't eating those things at home, so we'll be tabling the introduction of those foods for at least another year or so.

4) EpiPen Use. Should we have injected Georgia with the EpiPen during reactions that were (a) handled adequately by Benadryl, but (b) caused her to cough? (We asked this question because of stuff I have been reading on the topic. My confusion was, if it's a seemingly "mild" reaction that appears to be adequately handled by Benadryl, is it really necessary to inject the EpiPen just because there's a little coughing involved?)

Allergist's answer: Yes. If the reaction is affecting skin only (hives, some facial swelling), then Benadryl is okay. If it is affecting breathing in any way or involves the swelling of the tongue, then inject Georgia's thigh with the EpiPen and call 911. Ugh. I could write a whole post about this topic. It's a bit frustrating and disheartening.

5) Peanut oil. Must we avoid it? Prior to this appointment, we hadn't been worrying about avoiding peanut oil in most settings, because studies show that most allergic individuals can safely consume peanut oil if it's not cold pressed, expelled or extruded -- types of peanut oil that are all associated with "gourmet" oils, not the stuff they dump in the fryer at your average restaurant.

Allergist's answer: Yes, you should avoid peanut oil. It may be true that most types are okay, but you'll never know for sure what you're getting, and it's too risky. Again, to this I say: ugh. It's not like avoiding peanut oil is hard when you're buying things at the store - you just read the label. The problem is in settings where things like fries or chips are served, and now we can no longer assume that they're fine. As an aside, I would say to anyone reading this who is uninitiated into the world of food allergies, this is part of the problem: you end up having to avoid a lot of foods that in actuality are probably fine for you to eat, not just the ones that you know are dangerous. It's more limiting, and it also causes people to look at you like you are crazy overprotective when you tell them your daughter can't eat the french fries because she's allergic to peanuts.

So, that was it! All in all, a great appointment and wonderful chance to get some questions answered. Our allergist thinks that immunotherapy treatments now being conducted in clinical trials may be available to the public in 2 to 3 years. Wouldn't that be fantastic?

Friday, October 8, 2010

Allergy Mom Confessions: Pad Thai

Last night after the girls went to bed, Joe and I ordered pad thai take-out. You know, the kind with the little mound of tiny bits of chopped up peanuts on top?

We took it outside and ate it on the back porch just to be safe. And it was delicious.

I felt like I should destroy the evidence and take a shower afterwards. Never in a million years did I think I'd be snarfing down pad thai on my porch like it was contraband. The things we do now... Too funny.

Wednesday, October 6, 2010

New Allergist

First let me say: if you are in med school, or thinking about enrolling, I highly recommend you pursue the field of allergy and immunology. Granted, I am not a doctor and know nothing about the training involved or what the job pays relative to other specialties, but I can tell you there must be a shortage of pediatric allergists based on how long it takes to get an appointment.

Georgia's allergist, who we liked very much, moved out of state, thus forcing us to figure out an alternative. Switch to a different doctor within the same practice? Or switch to a new doctor in an entirely different practice? Pros and cons were weighed. Complicating the decision-making process was my firmly held opinion (based entirely on anecdotal evidence) that there's a wide range in the quality of available allergists. Some allergists take the time to educate the patient (or the patient's parents, as the case may be), and others only run a simple blood or skin test and send you on your merry way into a total morass of misinformation, which is scary when you consider that confusion about allergies can lead to life threatening situations.

We ended up deciding to stay with the same practice since they know Georgia's history, and we have come to expect a certain level of quality service from them. Well, we decided to stay, that is, until I called looking for an appointment 8 weeks out and was told that NONE of the physicians in the group had a single available appointment for the remainder of the YEAR! Our name was added to a several-months-long waiting list, even though Georgia is considered an existing patient of this practice.

So, that pretty much ended it for me. We'll be trying out a new allergist, at a new practice, where we were able to get in with about one month's notice. We got a recommendation for this allergist from a doctor friend of ours, and I've now begun the process of building this new allergist's abilities up in my head to the level of "magical wizard who will solve all of our problems". That's realistic, right?

Seriously, though, I get kind of keyed up for these appointments. They only happen once a year. On the plus side, the limited frequency of visits is a nice reminder that Georgia's condition is a very livable one. Think of all the children with diseases that require them to be in and out of doctor's offices and hospitals all year, constantly being tested, poked and prodded. I am so grateful for our health and the fact that no one in our family is facing that situation at the moment. On the down side, the once a year nature of these allergist appointments makes it feel like you've only got one shot to get more information and ask questions in person. One opportunity to change the course of how you live your daily life for the next year.

I guess I'm exaggerating a bit; it's not like you can't contact them at other times of year, but the annual appointment is the big show in my book. So tell me now - are there questions you have thought of that I should be asking? I don't want to forget to ask anything while I've got the allergist's ear!