Allergy Re-Testing Day

Today was the day - time for the every-18-months retesting for Liv's allergies. (Actually the original day was December 27 but we were dealing with hives and illness on that day so today was the new day).

First things first: ALWAYS ask what is going on at the allergist's office. They were only going to test her for the "seasonal" stuff today because they said her last skin test didn't show any positive food allergies (it did but I was armed with the results anyway). I pushed back and said "Here are her results from April 2015 and you can see that she's allergic to peanuts, tree nuts, and sesame seeds. You WILL be testing for food again today."

And they did test for food. And we have a few new items to add to our list.

Today the skin test results were positive for shellfish (totally new to us) and were once again positive for corn and soybeans (originally showed up on her first skin test back in 2011 but hasn't shown up again until today).

Liv's arms, halfway through the test

So...long story short: she eats corn products and items made with soy all the time with no issues so the allergist said to continue doing so unless we see an issue. The shellfish was a different story - we were told to avoid all shellfish. Which is fine, since Liv doesn't eat or like shellfish. Easy peasy.

Her positive reaction to almonds wasn't a complete surprise - we know she's allergic to almonds - but it's now a 4 out of 5 on the scale our allergist uses. Hazelnuts, peanuts, and sesame seeds were all still prevalent too.

[As an aside, I'm looking at her test results from 2015 and am seeing that at that appointment they didn't even run the tree nut panel - our results were from the blood test only! GAH! Another reason to always pay attention at an appointment].

The CNP today was great - she went down Liv's arm, one wheal (think: small hive) at a time making a determination by TOUCH of their severity. This had never been done at the office - except maybe back in 2011 at her very first visit. [In 2015 the nurse was hurried and didn't pay much attention at all, which is likely what lead to the miscommunication at today's visit.]

It was so nice to have someone take the time to discuss the new allergies and we even talked about the gluten sensitivity - and we're continuing the gluten free protocol because we're seeing positive (read: good) results with relation to the autoimmune diseases.

As always, we also did a blood screening for IgE levels for almond, brazil nuts, cashew, coconut, hazelnut, peanut, pecan, pistachio, walnut, sesame seed, soybean, and corn. Basically Liv spent 2 1/2 hours today getting poked by needles. 

Oh, and on the non-food side Liv is now allergic to horses and guinea pigs. Those are new to the list. Her "seasonal" allergies are getting better - so in 6 months we might be able to go to once-a-month allergy shots. At least we're making progress there. :)

And in the end we keep on keepin' on. Avoiding peanuts, tree nuts, sesame, and now shellfish. Keeping an eye on corn and soybean. And Liv is never getting a horse. Or a guinea pig.

Random Things I Think About All the Time

I will freely admit that I'm always thinking about Olivia's food allergies.

I'll see a recipe in a food magazine and think "well, that's one more thing I can't make." Or I'll be watching a cooking show (as I do every night while I cook dinner) and the chef will be making something with hazelnuts, or peanuts, or pecans and before thinking "wow that looks amazing!" I'll think "Olivia will never get to eat that." Or I'll be checking out a menu at a local restaurant and the only words that pop out are "sesame," "hazelnut," "pecans", and the like.

Now that might sound all doom-and-gloom to you but it's the reality we deal with.

As of right this very moment Olivia can't eat a myriad of things including: pesto (pine nuts = tree nuts), pecan pie, Nutella, most candy bars including those "without" nuts because they're processed in the same facility as peanuts and/or tree nuts, a bagel from our local bagel spot (Barry Bagels), a Big Mac, a Quarter Pounder, a burger or anything else from Five Guys, some brands of pretzels, some types of crackers, pistachios, anything from Chick Fil A, hummus, Almond Milk (or Cashew Milk), M&Ms, Burger King, anything with peanut butter, sesame seeds, most break-and-bake cookies, peanuts, doughnuts and cookies from most bakeries, most chocolate chips, some cereals, regular bread crumbs, milkshakes from Steak 'n Shake, Cool Whip, McFlurries from McDonalds, frozen coffees from just about every coffee shop, almonds, walnuts, any tree nuts (the risk isn't worth it), anything processed in a facility that also processed peanuts and/or tree nuts, anything with sesame seeds....and the list goes on.

Trust me when I say the list of can't-eat items is MUCH longer but I decided to NOT add everything. But you get the idea, right? 

It's no wonder that I spend a lot of time thinking about Olivia's allergies.

I also think these random thoughts:

- I hope she never gets bullied at school for her food allergies. Kids (and adults) can be so mean and heartless. 

- What if someone tries to bully her with food? 

- Why does everything at school have to revolve around food? Since when did cupcakes become so freaking important?

- What happens when she starts dating? What if her boyfriend wants to kiss her but he just ate Nutella? Oh my gosh! She's going to be kissing boys! And they can't eat the food she's allergic too! 

-What happens when she goes out with her friends in high school and she has to carry her EpiPens? Will her friends be supportive of her and the food choices she has to make? 

- Oh crap. She's going to go to college someday. Will she be able to manage her food allergies?

- I just ate pecan pie at Thanksgiving dinner. Now I can't/won't give her a kiss goodnight. 

- We're on a plane. I hope no one eats anything that she's allergic too. Oh great, they're selling snack boxes full of things with tree nuts. 

- I hate nuts. 

- Crap. I ate a sesame seed bagel at lunch. I need to wash my hands. And brush my teeth. 

- Oh good. It's Halloween again. Time to trick-or-treat and get a bucket full of candy she can't eat. I hate holidays. 

- This is so unfair for Olivia. 

- OK. Time to create an Easter basket with no candy. 

- I sure hope the allergy tests are negative next time. 

- Maybe it's time to do a food challenge?

- Why her?

- Oh man. She wants to try crab legs at dinner. What if she's allergic to shellfish and we don't know it? Good thing the EpiPens are nearby. 

- I hate food allergies. 

- The waitress says she told the chef about Olivia's allergies. But what if she didn't? 

- Did the waiter/waitress REALLY write down the list of food allergies? 

- Oh shit! Olivia just opened a package of crackers that were covered in sesame seeds! Holy SHIT! Quick! Brush off the table. Get the crackers away! Wash her hands. (This actually DID happen a few weeks ago - we were at a new-to-us place in the Outer Banks and Olivia opened a package of crackers that had sesame seeds on top. I have NEVER seen someone drop something SO FAST. She recovered quickly. Me, not so much).

...and the list goes on and on. 

So you see...allergies are an everyday kind of thing.
We take the good with the bad.
There are small victories and big defeats.

Yesterday Olivia's dad took her to the ice cream shop up in Maberry and SURPRISE! they really DID have a bottle of Hersheys' chocolate syrup behind the counter. So my vanilla ice cream kid was able to skip the sprinkles and have chocolate syrup instead. She was VERY happy.

Which just goes to show: sometimes all it takes is some chocolate syrup on a bowl of vanilla ice cream and all is right with the world.

Allergens Show Up in the Strangest Spots

As a parent of a child with food allergies I spend a lot of time reading labels.

I'm talking about A LOT OF TIME.

If you happen to see my in the grocery store it's a good bet that you'll find me reading a label.

Food labels are a tough nut to crack sometimes (sorry). There's no rhyme or reason really when it comes to food labeling. Sometimes allergens are listed, sometimes they're not.

The FDA requires that the top eight allergens are listed - milk, egg, peanut, tree nut, wheat, soy, fish, crustacean shellfish - but other than that it's sort of a free for all. There's no real requirement about the whole "manufactured in a facility that processes" labeling.

Which is why parents of kids with food allergies read EVERY SINGLE LABEL.

And if something says "processed in a facility" or "may contain" or anything of that sort and those words are followed by peanuts or tree nuts, it's going to be off limits for Olivia.

The hardest ingredient right now is sesame seed because it doesn't have to be listed at all.

Why?

Because it's NUMBER 9 on the FDA's list of top allergens and only the TOP 8 MUST BE LISTED.

Yep, that's right. There's not a top 10 list of allergens that must be listed - there's a top 8 list. And sesame is number 9.

Things that contain or may contain sesame seeds include bread crumbs, most of the Pepperidge Farm breads, bagels, hummus, Asian food, Mediterranean food, crackers, some pretzels, some chips, and the list goes on.

And it's not always food that is the culprit. Last December I discovered the Lip Smackers brand lip gloss is made with sesame seed oil (WTH?).

So the label reading goes as far as beauty products, lotion, shampoo, makeup, etc.

You just never know where those pesky allergens are going to show up!

Dining Out with Food Allergies

After Olivia was diagnosed with food allergies, our dining out routine changed dramatically.

Gone were the days where we could say "hey, let's try out that new restaurant" without a second thought about the menu.

Now we have a running list of where we can go and where we can't go. Olivia will never eat at Five Guys. She likely won't learn how amazing sushi can be. Hibachi restaurants are off limits. Chick-Fil-A is a no-go. Burger King is off the list.

Why so many "no" restaurants, you ask? Let me explain....

Five Guys fries in peanut oil and has boxes of peanuts at the door. It would be like walking through a mine field. Sushi = sesame seeds which = cross contact. Same with the hibachi restaurants. The last time we ate at one Olivia was sick the rest of the night (this was B.A. - before allergies). Chick-Fil-A also has a peanut oil issue. And have you seen the buns at Burger King? It's sesame seed heaven.

Nope. Nope. And nope.

Now our restaurant routine is more like "Hey, we should go here." To which I normally respond "I'm not sure if it's safe for Olivia. I'll have to call/check the menu."

I'm a big menu reader. And since Olivia's diagnosis my eyes immediately dart to words like "sesame seeds," "coconut shrimp," and "[insert peanut and/or tree nut] encrusted whatever."

Who would have thought that words as innocuous as "sesame," "coconut," "pecans," and "hazelnut" would become my red flag words? 

If we're dining somewhere new the first thing I do is tell the waitress "My daughter has a peanut, tree nut, and sesame seed allergy so please inform the kitchen of this so they can ensure there is no cross contact." I also make sure that the food isn't fried in peanut oil. And if I see things like coconut shrimp on the menu I know we can't order anything fried. The risk just isn't worth it.

Recently on vacation we stopped to dine at a Mexican restaurant in West Virginia and when I asked the waiter if the tortilla chips were fried in peanut oil his response was "Cheese dip?" It took several attempts at asking the same question (and getting the same "cheese dip?" answer) before we learned the chips were safe.

Sometimes food allergies are lost in translation.

We have a running list of "safe" places for Liv here in Toledo (and a list of "no way Jose!" places too). 

We love dining at Ciao! for special occasions like birthdays - they are always receptive to my "allergy instructions." The same is true of Mancy's Italian. Olive Garden is a good spot and Liv recently dined at Red Lobster with her dad and they gave her their "allergy menu" which was pretty awesome.

We frequent our local Fricker's for wings. Subway is a good bet for sandwiches (in turn we avoid the local bagel shop because there are sesame seeds everywhere).

Basically if I walk into a restaurant and tell the waitress/waiter about Olivia's food allergies and they (1) write it down and (2) come back with updates from the chef about what is safe/not safe I am willing to add that spot to our "safe to visit" list.

Of course menus can always change and ingredients can and do change so it's a good idea to ALWAYS tell the servers about Liv's allergies.

And sometimes I need to do some investigation before allowing Olivia to visit a restaurant - including reading the menu if it is online or even visiting in person to see what's what. 

Dining out with food allergies is challenging but it can be done. One of the things I'm going to do with this blog is short reviews of local restaurants with a good/bad rating when it comes to allergies.

Happy dining!

Hi There.

So because I don't have enough to do already (cough, cough) I decided it was high time to start another blog.

You know, to add to the three I already have (one of which I sort of pay attention to, one that I'm trying to love more, and one that I haven't loved posted on in YEARS).

But this blog is different.

This is all about allergies. Olivia's allergies to be specific.

If you're new to my world (hello you!), let me give you the 4-1-1 on what's going on.

Olivia is 11. She'll be entering 6th grade in the fall (ACK!) and she's been living with food allergies since the fall of 2011.

She was diagnosed with allergies to peanuts, tree nuts, and sesame seeds when she was in the second grade. To say we were shocked by the diagnosis would be an understatement. We had NO idea that anything was wrong.

In retrospect we probably should have suspected something - she would throw up after eating peanut butter and finally stopped eating at completely. We dined at a Hibachi restaurant about 10 months before her diagnosis and she was ill that night (we know now that it was from the sesame seeds). And as a baby she had horrible eczema and issues with certain formulas).

Now, we've been living with and dealing with the challenges of life-threatening food allergies for almost four years.

I wish I could say it gets easier but it doesn't. It's more of a routine now. There are still tears and frustration (from Olivia mostly but also from me). There are challenges. There are horrible people who can't see past the end of their noses.

But we deal.

So this blog is going to be about how we're dealing. And what we're doing. And places we love to visit in our city (the "Glass City" is Toledo, Ohio just in case you were wondering) and beyond. I'm going to share a lot, so be prepared.

And, thanks for reading!