Doing this all wrong

Recently I saw a blurb on the Allergymoms.com blog about helping adults "get" food allergies, and this line jumped out at me,

"My experience is that it’s better to provide published information rather than explaining food allergies in your own words."

Oops. So, yeah, I can see why that's probably very good advice, but obviously the complete opposite of the route I'm going with this blog. I mean, I've got links to more reputable sources, but this site is mostly full of my own yammering.

As publisher, author, and primary audience, though, I guess I get to decide that's okay.

How many people have food allergies?

This is a question I'm curious about. The statistics that I often see cited are:

6% of American children have a food allergy;
4% of the general American population has a food allergy; and
The incidence of peanut allergy alone doubled in the five year time span between 1997 and 2002.
(Note, there are also many sources pointing out that the increase in peanut allergy does appear to be a "real" increase, not just an increase in diagnosis.)

Recently I had a conversation with my friend Susan about these numbers. I have no scientific basis for this belief, but we both thought based on our own experiences that the above numbers (well, at least the first two percentages I mentioned) might be a bit outdated. Anecdotally, I can think of lots of friends, or friends or friends, etc., whose kids have a food allergy. Seems like more than 6% to me.

Some possible explanations for this:
1) My own heightened awareness of food allergies is causing me to hear about these stories more?
2) There's something weird going on in my demographic health-wise that is causing our kids to have food allergies at a higher rate than the general population of American kids?
3) The 4% and 6% numbers are outdated and may really be higher?

Off the top of my head, here are the people I can think of in my own small circle of friends whose kids have at least one food allergy:
--Coworker/friend S.: daughter allergic to sesame, peanuts and tree nuts
--Coworker/friend G.: son suspected allergic to milk (he's quite young; not yet confirmed by testing)
--Joe's coworker J.: daughter has food allergies to nuts and maybe something else? (I'm not sure - I don't know her so well)
--Friend J.: son allergic to peanuts
--Joe's friend from high school A.: daughter allergic to peanuts and tree nuts
--Friend C.: son allergic to peanuts
--Cousin B.: son allergic to eggs and peanuts

I might have some of the specific foods wrong, but you get the idea. I don't think my mom could've named that many parents of food allergic children 33+ years ago when I was born, so something is up, for sure.

As an aside, each of the children noted above is a firstborn, and all of them are currently under the age of 4. So, it will be interesting to see whether they grow out of these allergies and whether any of their siblings have allergies.

EDITED TO ADD: Grrr. Typing this list and then looking at it made me think, how come Georgia has so many different allergies?! Most of these kids have 1 or 2, but we're currently sitting on 6. Ugh. It's not good when you're actually kind of jealous not just of the people without allergies, but the people with fewer allergies. I know she's not the only one in the multiple-allergy-sufferer boat, but I do hope her list gets shorter over time.

Food Allergies Suck

What was I saying before about keeping a positive attitude?

Forget that for now. I am in a negative mood. Feeling like no one understands.

Sorry - it's my party blog, and today I'll cry if I want to.

A Couple of Good Books

Recently I picked up two children's books for Georgia having to do with food allergies. She's certainly too young to be expected to manage her allergies by herself, (duh), seeing as how she's under 2 and can hardly even pronounce the word allergy, much less fully understand it. However, I do think that it's important to start taking baby steps towards getting her to understand and pay attention to her allergies. I mean, I hope that by age 3 or 4 she knows that she can't just eat everything put in front of her at a birthday party or handed to her by an adult or a friend.

So, I decided to order these two books from Amazon:

Allie the Allergic Elephant

Mommy, Is this Safe to Eat?

Each is designed for an audience slightly older than Georgia, but she enjoys them both, and I think she's taking something valuable away from them, albeit in tiny morsels of knowledge that may take months or years to really sink in. Let's put it this way, after just 1 reading of Allie the Allergic Elephant, Georgia was parroting back to me, "No thank you peanuts." Not a bad start!

The second book, Mommy, Is this Safe to Eat?, is filled with actual photographs of children rather than drawings, so it really captured her attention.

I was worried that these books might scare Georgia, what with the talk of hives, and swollen lips, coughing, and carrying medicines, but to my pleasant surprise, neither of these books freaked her out at all. They must've been focus-grouped on a bunch of small children, because the message is serious but not intended to be frightening. To the contrary, these books attempt to reinforce the message that a kid with a food allergy is just a regular kid.

I'd highly recommend either of these books. They'd be great even for children without food allergies who might need to better understand what a neighbor or classmate's food allergy really means.

I will have to keep my eye out for other age-appropriate books that are broader in scope, because these two books only address peanut and tree nut allergies, which unfortunately won't cut in our house. (In fact, I'm hoping that those topics become obsolete for us once Georgia's old enough to do a food challenge for nuts -- but that's a post for a different day!)

Becoming "That" Mom

It's been fairly easy so far to keep a low profile with respect to Georgia's allergies and not come across as crazy overprotective parents. Sure, we've probably driven the nanny, our nanny-share partners (hi Crystal and Rob if you are reading this!), a couple of babysitters, and our own families crazy with our ever-changing rules and restrictions regarding Georgia's diet and what foods we will and will not allow in our house, but as for strangers? Other friends? We really haven't had to bring up Georgia's allergies too much or bother them with the issue.

Unfortunately, though, I think our ability to go low-pro is largely due to Georgia's age. As she gets older, we'll stop having such complete control over what she eats and where. From playdates to birthday parties to preschool, we'll have to start trusting a wider group of people that may feed her.

A couple of recent events have me thinking about this. One was an instance where Georgia was around a young child eating what I think was peanut butter, and I found myself feeling a little paralyzed watching it. (I think this kind of parental anxiety is the part of food allergies that it's hard for outsiders to comprehend. You think you can imagine putting yourself in someone else's shoes but you really kind of can't. Believe me, I grew up eating pb&j's all the time and never used to think of peanuts as if they're some kind of evil. It's an unsettling feeling to realize that silly peanut butter can make you go suddenly nervous.) But back to the point - I didn't say anything and didn't want to have to but was watching Georgia like a hawk. Maybe I should've said something? I don't know. The second instance was one where a kind person gave Georgia a cookie, which she is not supposed to eat because of the eggs in them. I hated to make this person feel weird or make a scene, so instead of saying anything I just deftly took the cookie away while no one was looking before Georgia ate any. I think this was the right thing to do under the circumstances. Not every moment has to be an opportunity for food allergy education and advocacy, right? I don't think I'm cut out for it -- at least not yet. At the same time, though, I know that as Georgia gets older I will need to get braver, clearer, and more up front about addressing her food allergies with others if I am to adequately care for my daughter or have any peace of mind when leaving her in others' care.

On that note, I am pasting in excerpted text from a blog entry I stumbled upon that I think pretty well sums up a lot of what I'm feeling. I don't know if I'll have to make safe snack lists someday, but I can certainly relate to this mom's concerns about sesame allergy. No sense reinventing the wheel if someone else has already said it best, right?

Don't Kill the Allergy Mom (from Scrambled CAKE, September 9, 2007)

"The Allergy Mom. You know her, the one who goes on about deadly foods (everything your child likes to eat) as she politely hands you a list of “safe” snacks (nothing he’ll go near). Once she’s out of earshot, the other parents huddle and express outrage. “But all my kid eats is peanut butter!” “What am I supposed to send for lunch?” “What nerve! Can her kid’s allergy be that serious?”

Yes, it can. Food allergies can kill. And sometimes they do. Sometimes at school. Be thankful you’re not an allergy mom.

When Smartypants was a toddler, I mixed up a nutritious batch of hummus for him. He loved my homemade blend of chickpeas, tahini (sesame paste) and garlic. I beamed as he gobbled my creation. Then he got tired, started rubbing his eyes and fussing. I figured he’d had a long day and he was telling me he was ready for bed. Wrong, he was telling me he was in distress.

When I wiped off the hummus that coated his fingers, arms, hands and face, I saw he was bright red. He had a rash on every inch of skin the hummus touched. Hives erupted before my eyes. Fortunately, my cousin had advised us to keep a bottle of Benadryl in the kitchen, so DH grabbed the nearby bottle while I phoned the pediatrician.

We gave our young son the medicine and sat watching him, studying the dynamic 3-D show on his skin, dutifully tracking his breathing, the ever-changing hives and his vital functions. And trying not to show how completely freaked out we were.

So, yes, I’m an Allergy Mom.

Thankfully, we were spared a trip to the ER, but that night we were introduced to a whole new set of parenting worries. Allergy testing indicated a potentially life-threatening reaction (anaphylaxis) to sesame."

"Even though sesame is not as ubiquitous as peanuts, it’s out there. Sesame seeds top bagels, loaves of bread and pretzels. It’s a common ingredient in Japanese, Chinese, Greek and Mediterranean foods (falafel, hummus, etc.). Those potentially deadly seeds lurk quietly in many snacks “party mixes” and containers of bread crumbs. Allergy Moms ask questions. We read labels. Always.

Now that Smartypants is older, he takes more responsibility for himself (I still give a heads-up to his teachers- I’ll get into more detail about this later in this food allergy series). But when he was in preschool, I was the Allergy Mom who handed out the “safe” snack list. A list compiled after a long night at the grocery store, examining the fine print and ingredients list on almost every product label in the snack/cracker aisle.

Most of the parents took care to stick with the list or call me if they wanted to bring an unapproved item. Some even insisted I read the product label myself before giving the green light. Their concern meant a lot to me. It’s scary enough sending your child out into the Big World. When that child has serious food allergies that maternal fear inches up a notch or five.

So please be patient; hold back your snarky comments and give the Allergy Mom a break. She’s depending on you to help keep her kid safe."

Debbie Downer? Think Positive.

So often in life you can't really control the circumstances you face; all you can control is your own attitude in dealing with those circumstances. I am a believer in the power of positive thinking, but of course I don't always live up to the ideal.

After Georgia was diagnosed with food allergies, I picked up a copy of this magazine in Whole Foods:

I don't know why, but the name of this publication just cracks me up. It seems like kind of a downer way of looking at life with allergies. Maybe it was just this particular issue, though, with the somewhat drab looking photo of various breads. (I really don't mean to knock this thing overall, because I'm sure the magazine contains useful, informative stuff, and I have seen other issues with much more colorful, catchy cover photos. I'm all for any reading materials on the market that help allergy sufferers and non-allergic folks alike learn more about this stuff.) Anyway, I still think the name is funny.

Contrast that with this logo:

Enjoy Life is a brand of snacks and cookies specifically designed for people with food allergies. Kudos to whoever did their branding, because I find this name to be so much more positive. A refreshing reminder that living with food allergies doesn't mean you can't enjoy life to the fullest.

And just to crank up the cheese quotient of this post, here are a couple of parting quotations about optimism and the power of positive thinking (all of which were of course cut and pasted from websites that I don't know the reliability of, so apologies to the original authors if these have been butchered!):

If you don't get everything you want, think of the things you don't get that you don't want. ~Oscar Wilde

I don't think of all the misery but of the beauty that still remains. ~Anne Frank, The Diary of a Young Girl

The excursion is the same when you go looking for your sorrow as when you go looking for your joy. ~Eudora Welty

Don't grieve that your roses have thorns. Rejoice instead that your thorns have roses! ~(Not sure who...found this unattributed quotation on the web)

And the capper:

I wish I was a glow worm,
A glow worm's never glum.
'Cos how can you be grumpy
When the sun shines out your bum!
~Author Unknown

A very good thing (Cool beans!)

Good news: Georgia can eat beans now! Like, pretty much all beans - green beans, pinto beans, white beans, black beans. Everything but chick peas which are still off limits until further testing is done.

The rest of the beans we were allowed to phase back in on our own and have done so with no problems. So, it appears that The Great Bean Scare of '08-'09 was a false alarm.

It's so wonderful to add these tasty and nutritious little buggers back to her diet.

It's so relieving to move an ordinary, every day object (food) out of the "potentially threatening to your child" category and back into the "normal/who cares?" category.

Georgia, a wonderful world of Mexican food has just been opened up to you. ¡Buen Provecho!

Stuff that Bugs Me (Installment #1)

1. People that both accept the "hygiene hypothesis" as gospel truth while simultaneously not at all understanding it. I did not give my child food allergies by overusing hand sanitizer, and p.s., I'm not even close to being a germaphobe.

2. People who write inflammatory articles and blog posts making it sound like food allergies are the invention of parents who need to feel like their child is "special." I'm sure there is someone out there that actually fits that profile, but must you diminish everyone else's real concerns by focusing on the outliers? Trust me, no sane person wants their kid to be "special" in this way.

Just a venting post. I realize that both of the above complaints betray my own insecurities as a mom of a food allergic child. It is something that I have struggled with -- trying not to care so much what anyone may think of me as a mother when the subject comes up that Georgia is allergic to certain foods. It's just that food allergies have gotten more and more media attention in recent years, not all of it accurate, and certainly not all of it positive. So, as soon as the subject comes up (which frankly, I usually try to avoid unless necessary - I guess I'm not the best food allergy spokesperson at this point in time), I just assume that the person I'm talking to has a lot of preconceived notions and is judging me left and right. First of all, that may not even be the case, and I'm obviously guilty of prejudgment myself if that's what I'm thinking about this person for no apparent reason. Second, who cares? (That is the part I especially need to work on.) I can't blame myself for whatever caused Georgia to have food allergies, whether it be genetic or environmental, certainly it was nothing that I knew how to prevent otherwise I would have. I can't control whether this person somehow doubts that Georgia's food allergies are "real." On a related note, I need to get over my own embarrassment and shyness about asking questions in restaurants about exactly what is in the food. I know that my child's health may depend on the answer, so I'm ashamed that I have sometimes taken chances rather than risk bugging a waiter with a question that might be annoying. Working on all of this....

Initial impressions of the Children's Memorial Food Allergy Study

Woops. I really had high hopes of coming home and recording our thoughts and impressions of our participation in the Children's Memorial Food Allergy Study on the same day that we did it so that everything would be fresh in our minds. Unfortunately, we were too busy that night, Georgia happened to get pretty sick the next day, and yada yada yada, here we are over 10 days later. Oh well, better late than never.

Believe it or not, this was our first ever trip to the local children's hospital since Georgia was born. (Knocking on wood as I type this....) The place seemed very nice, clean, and child-friendly, but of course there's something just sobering about setting foot in such a place and thinking of all of the immense joy, and hardship, and healing and suffering that is going on all around you. I wonder what it must be like to work there.

The folks running the food allergy study were EXTREMELY well organized. As soon as we told the ground floor information desk attendant that we were there for the food allergy study, she called upstairs to confirm that they were expecting us, and someone came down to meet us and escort us to the room where the tests would be conducted.

The setting was bigger than, and more stocked with all sorts of equipment than, a typical doctor's office, but it was not a regular hospital room, either. It did have a bed but did not feel super "hospital-y." We were surprised by the number of people involved in carrying out the whole appointment, but as I mentioned, they ran a tightly run ship and each seemed to serve a purpose.
In attendance in this room were:
--Georgia, Joe and me
--Deanna, who I guess you'd call the coordinator of the process - and the one asking all of the umpteen questionnaire questions of us
--2 nurses (or nurse practitioners? I'm nor sure of their titles) carrying out the height, weight, BMI, blood pressure, blood draw, and skin prick tests
--a student intern from Loyola, who in addition to observing gave Georgia a goody bag and tried to keep her happy
--another helper of some sort whose primary job was to tell Joe how to breathe during the lung capacity test

A few noteworthy things (and I'm compiling these from Joe's input and mine):

--Joe saw stars during the lung capacity test, which basically involves blowing really hard into a tube thing while this woman yells, "KEEP BREATHING! KEEP BREATHING! KEEP GOING! KEEP BREATHING! KEEP PUSHING!" at you the whole time to encourage you to reach your true max. Georgia didn't have to do this because she's too young; I didn't have to do it because I'm pregnant.

--Same is true for BMI -- only Joe had his tested (17%). Although, they did take my height and weight, and I made sure that they included a big "pregnant" annotation in their records!

--They had a tiny infant sized blood pressure cuff for Georgia. Joe had the lowest BP readings he's ever had. In his non-professional medical opinion, this was because he was holding Georgia at the time. "A natural sedative. It was like measuring the effect that holding a baby actually has on someone."

--The room had these small TV monitors that swung out on an arm, which they had tuned to cartoons in an attempt to keep Georgia happy and/or distracted. Great idea, but too loud. Also, they kinda spent their big ammo too early. I think they should've saved that distraction for the hard part (i.e., the blood draw), which was later during the appointment, rather than starting it during the simple blood pressure test, which was the first thing they did, and which Georgia didn't mind. The other funny thing about the TVs was that all of these nurse types totally knew all of the characters and songs and kept pushing the TV and getting all up in Georgia's face about it, like, "Oooooh! Super Pets!" (or whatever they're called), except that Georgia hadn't seen these shows before, so it was all lost on her. You'd think that due to not watching TV at home that she would've been enthralled, and I suppose she was for a few minutes, but really she doesn't seem to have "trained" her attention span for TV consumption yet, so it only worked for about 3 minutes at a time, if that.

--One of the biggest (and certainly most time consuming) parts of the session was orally answering a TON of questions. I expected this but the downside was that at times I felt like I was being pulled in two directions at once. Like, I'd be answering questions and have to stop and say, "Wait - I need to watch this," so as not to miss out on what they were doing to Joe and Georgia. The questions were of course about what Georgia eats and when she first started eating each food. But it was more than that -- lots of questions about all of our sleep habits, lots of very detailed questions about what I ate (and how often) while I was breastfeeding. I mean, really exact - like how many times per week did you have beans? how many times per week did you have orange vegetables? how many times per week did you have green vegetables? I tried my best to remember. Both Joe and I had to answer certain questions about ourselves, but for the Georgia or "family" questions I served as primary answerer. You know how it is with questionnaires when you can tell what they're trying to get at, but your literal answer doesn't quite fit? Well, that happened to us, and Joe and I sometimes found ourselves trying to answer the question behind the question - which of course was not what we had been asked to do. Like, for instance, when they asked us whether in the last 6 months your allergist had adequately explained our child's allergies, we were thinking, well, yes, the allergist is thorough and all, but no, we haven't had an appointment in over 6 months, so um....not sure??? That kind of thing.

--Skin prick tests were performed on Joe's forearm and on Georgia's back. With a single tool they pricked the skin in 8 spots at once. Joe says it felt like a bunch of tiny simultaneous pinches. Then they waited 15 minutes to test for any reaction and measured the "wheal" (aka, welt) size in any spot where a reaction occurred. Joe says the waiting period sort of felt like wearing a wool sweater in the heat - hot and scratchy. He only reacted to mold and dust mites. Georgia reacted to fish, wheat, egg, cat, peanut, sesame and walnut. (But keep in mind that a positive skin test doesn't necessarily mean an allergy -- we have never had trouble with feeding Georgia wheat or cats - har har.)

--The blood draw was the worst part. (Well, except for Joe's which went better than any he could remember. He said he didn't even feel it. Mine also went fine, and it did not hurt, but I do think that they screwed mine up a little bit because I ended up with a bruise for several days afterwards.) As for Georgia - they had to try two different times, once in each arm. She pretty much cried and screamed the whole time. Even when they just put that little rubber-band like tourniquet on her before inserting the needle. (Side note: we're talking maybe 2 tsp of blood here - nothing major.) The nurses looked nervous about dealing with her tiny veins and seemed to get easily flummoxed. I know that Georgia was more freaked out than she was in any real pain, but still, it's hard to watch your child go through that. Joe was more at peace than I was during Georgia's blood draw, I think because he was the one in charge of holding her in his lap, basically in a big bear hug to steady her arms. So, he knew that she was safe and snug. Rationally, so did I, but it was hard to just be standing there. Overall, though, I think we both hid our emotions, so I give us points for not being the type of parents that only further freak out their kid in a scary situation by looking freaked out themselves. Anyway, I would certainly recommend that other parents participate in the food allergy study and not get dissuaded by the prospect of the blood draw. That said, I was surprised that the woman who drew Georgia's blood was not a particularly "good stick" given that she works in a children's hospital. As she said herself, "the guys down in the lab could get blood from a rock." I don't know - maybe she was kind of new at it?

--Georgia actually asked to go home at one point, which was a first. I really think this had to do with her being a little bored and fed up with being in a small room for so long (about 2 and half hours, total) and not with actually being upset by the experience.

--I'm saving the best for last: We got free valet parking (on a day when it was pouring rain - woo-hoo!). We also got about $100 of Target gift certificates for participating! I knew that the study gave away gift cards to participants, (as a nod towards off-setting any travel expenses or inconvenience), but my understanding was that it would be a nominal amount, maybe $10 total. Well, maybe they're overstocked with donated gift cards or something, because I got home to realize that they had given us several more - and to a store where we'll actually use them!

Overall:
The study was well run and organized. Everyone involved behaved professionally and treated us and our daughter fantastically. It was a long morning, and a surprisingly tiring experience for all of us, but I would strongly encourage anyone else with a food allergic child to sign up and participate in this study. I have high hopes that the data they collect will one day lead to research breakthroughs, or maybe at least a clinical study.

Tomorrow is the day!

Tomorrow morning begins our family's participation in a food allergy research study. And I'm excited! Just thought I should record this optimism in case it case it doesn't last. Full report after the fact - I hope I'm still feeling this positive about the experience when we're through.

In the meantime, here's a little blurb from the people conducting the study:

"WHY IS THIS STUDY BEING DONE?

We plan to study two groups of children under the age of 21: one group with food allergy (case) and another without food allergy (control). We also plan to study families who may have at least one child with a food allergy. The purpose of the study is to look at the information from both case and control children and families to better understand how environment (where and how you live) and genetics (things you inherit from your family at birth) affect food allergy and related conditions."

And here's my own little blurb:

WHY ARE WE SUBJECTING OURSELVES TO THIS STUDY?

For Georgia. And for others with food allergies. And for other people who might not ever have to experience a food allergy in the first place if the researchers can figure out more about prevention and cure. But I'll be honest - it's pretty much all about Georgia. Basically, food allergy is an area that needs more research, and I hope our family can directly benefit from that research, so I figured that the least we could do is volunteer to participate in a study that essentially subjects us and our daughter to nothing more than what they'd subject her to at her regular allergist appointments anyway.