That's what friends are for

In connection with the whole letter to Congress thing mentioned in the previous post, I recently exchanged emails with a good friend of mine who is a lifelong food allergy sufferer.

She really has no idea what a positive source of inspiration and comfort she is for me when it comes to dealing with Georgia's food allergies. When my mind starts swirling with all of this stuff, or starts slipping towards greater anxiety, I can remind myself of my friend, who is of course a normal, happy, well adjusted adult despite having to put up with food allergies. Also, she has had multiple scares during her life - awful incidents requiring EpiPen injenctions and trips to the ER. You would think that would make me feel worse, but the fact that she has always come out okay is what makes me feel better. That's the part I choose to focus on.

Anyway, I'll share a few lines of her email, and you'll know why this person helps me stay grounded:

"For what it is worth... ...it will always be harder for you than it is for her."

"The allergies are just going to be part of her life, and she won't know life without them-- I know that sounds hard for a parent, but to her it is all she will know and she will learn to adapt."

Another tip she gave me that brought a smile to my face was to always pack Georgia a good lunch for school field trips, so that she wouldn't have to eat a soggy turkey sandwich. To me this highlighted an interesting difference in perspective -- as the parent, you may be worrying about impending doom, when all your kid is really concerned with is avoiding a soggy substitute box lunch.

Friendship is a two way street, though. While I may not be giving back to my friend as much as I feel like I'm receiving from her right now, she did at least confess to me that hearing about our family's experience is making her see her own food allergies from her mom's perspective for the first time. So, there is that, which is nice.

Just Sent a Letter to Congress...

...via the Food Allergy Initiative's website. The letter requests increased federal funding for food allergy research.

Here's the online form for submission:
http://www.votervoice.net/core.aspx?Screen=Alert&IssueID=17107&SessionID=%24AID%3d1048%3aSITEID%3d-1%3aVV_CULTURE%3den-us%3aAPP%3dGAC%24

Thought I'd link it here.

Reflecting on a year

It's been just about a year since Georgia's first known allergic reaction, which was to a bite of hummus. (I say "known" only because there are some of her more serious eczema outbreaks when she was younger that I now wonder if were due to foods that I was eating that she was getting through breastmilk.)

Anyway, I thought I should pause and reflect on our first year of dealing with a food allergic child. What the surprises have been, etc.

• It feels like it has been a lot longer than a year. Feels like it's been from the beginning but it hasn't.

• The wait to get in to see the allergist felt interminably long.

• I can't believe what a crazy restricted diet she was on for about 2 months while we were waiting to get in for that first allergist appointment. Felt like a caveman's diet.
  

• Given Georgia's young age, and our ability to control her diet 100%, I think the biggest impacts on our life so far have been: (1) When we go out (for errands, outings, whatever) we tend to take food with us way more often than other parents of a toddler her age, just in case; and (2) We hardly ever eat out at restaurants with her - to us it's just not worth the hassle most of the time. (So, yeah, I guess we're not the "cool" parents who haven't let having a child impact their own social life at all (the ones that many childless people I know seem to always think of as the "best" or most laid back). Oh well!)
  

[As to (1) and (2) -- both seem silly if you consider the multitude of foods that Georgia CAN eat. Problem is knowing what's in everything, which is why it's just so much more convenient to us to pack stuff or eat at home than to have to constantly ask questions or read labels when we're out.]

• We've been lucky that Georgia has had no serious allergic reactions. What I wish people could understand is that even the mild ones are not fun to experience. They're scary.

• I think every first time parent goes through those, "is the baby dead?" moments when they just have to go in and check on the sleeping child to put their mind at ease. I think we experienced (and still experience) that syndrome WAY worse than the average parent. (It stems from the fact that we've been told that anaphylaxis can kick in up to 2 hours after exposure to a food, and when you're dealing with a kid who sleeps as much as Georgia did this year, well, there's not always room for a 2 hour window between eating and sleeping.) I know it's probably a ridiculous, unfounded fear, but it crops up now and then.

• I guess I knew before we were thrust into the fold that food allergies were a "hot topic." But I had no idea how much misinformation is out there. How strongly opinionated people can be about this stuff. How much negativity there often is in the media's coverage of the issue. How truly unsympathetic, and frankly, downright cruel, people can be when leaving comments on the Internet (to articles or blog posts they've read). I have got to learn not to let those people get to me, or just not to read the comments! (BTW, when it comes to this stuff, Joe is SO much better than I am at not giving a hoot what anyone else thinks. He would never let such hurtful comments get to him.)
  

• I've noticed a pattern. As vigilant as we try to be, we ebb and flow. We go for a period where Georgia has no allergic reaction to anything and slowly we become just a little bit more lax -- a litte more willing to let her eat something without asking first what's in it and instead going with our assumption that it's okay. And then she has some kind of reaction, and suddenly we're all hyper-vigilant again. [That's normal, right? I imagine that pattern will continue forever as we, and eventually she, try to always strike the right balance between safety and unnecessary caution.]
  

• To our surprise, we find the sesame allergy to be the most annoying to deal with.

• Another surprise: We wish they could come up with an allergy test for severity almost as much as we wish they could come up with a cure. Of course a cure would be ideal, but if that's not possible in the near term future, then please, oh please, scientists, work on a severity test.

• This is stating the obvious after having reflected on all of the above, but it's remarkable after one year of dealing with food allergies how much of a head game allergies can create. (At least for the parents. I don't ever want this stuff to stress Georgia out as much as it can stress us out.) The physical part of food allergies is so manageable; the mental part sometimes requires more work.

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!