Tuesday, July 30, 2013

Food Allergy Bloggers Conference Ticket Winner!

Before proceeding with the contest winner announcement, I would like to take a moment to express my heartache and condolences to the Giorgi family, for the loss of their 13-year-old daughter, Natalie.  We feel these losses quite deeply in the food allergy community and wish the Giorgi family peace and healing, in due time.

We that will be gathering at this conference will be spending a good deal of time learning more about how to educate and advocate more effectively, and we'll be learning about upcoming treatments, as we look forward to the day when a simple treat cannot cost a person their life.

The winner of the ticket, who will be joining us at the conference (unless they've entered for a friend), is:
a Rafflecopter giveaway

Congratulations, Sarah!

Sarah blogs at Gluten-Free and Dairy-Free at Walt Disney World

Many thanks to all who entered.

Thursday, July 25, 2013

Auvi-Q 0-Dollar Out-of-Pocket Savings Card!

The Auvi-Q has returned in ownership to its original inventors and their company, kaléo. An updated post will be published.
(Disclaimer: I was once the invited guest of Sanofi US, to view the Auvi-Q before it was released, but I am not required to discuss the Auvi-Q, in any way, and all opinions and excitement levels are purely my own!)

Exciting news from Sanofi!  There a savings card available to get an Auvi-Q for as little as $0 out-of-pocket!  It covers up to a $100 off the insurance co-pay.  It will reduce the price by $100 for cash-paying customers.  The savings card can be used for up to a maximum for three (3) two-packs per prescription.  (Make sure your allergist fills out the prescription for the correct number of two-packs, also referred to as "vials" by some pharmacies.  For example, three sets would be "6 vials".)  The offer can be reused an unlimited number of times up until 12/31/2013, so stock up, soon!

Go to http://www.auvi-q.com/Media/pdf/Zero-Coupon.pdf to get your savings card, today!  Also make sure to go to www.auvi-q.com/sign-up to register for refill reminders and future savings notifications.
Sample Savings Card
If you've been on the fence about getting the Auvi-Q, now is the time!  

You can read this post, which has a link to my other posts on the Auvi-Q, if you want to find out more about this amazing, potentially life-saving device.

Tuesday, July 16, 2013

The Personal Impact of Medicine

Caroline of Grateful Foodie has extolled the virtues of our friend Henry Ehrlich, of AsthmaAllergiesChildren.com and I wanted to write a little about his latest guest editorial.  It's a personal account of one man's 40+ year journey with asthma, and his treatment with a recently FDA-approved treatment that changed his life.

I was speaking with our friend, Henry, about it, as I was wondering how he comes upon these fresh perspectives and accounts for his site.  He said that Tony Cook showed up as a new Twitter follower and when he saw that Cook was the first patient to get this procedure outside a trial setting he seized the opportunity.  Henry said,  "We had done a couple of pieces on BT [bronchial thermoplasty], but from 'above'.  Getting a patient perspective--that was news.  I'm very grateful to Tony who is really generous and anxious to share his good fortune."

I am grateful to both Tony for sharing his story, and to Henry, for bring Tony's story to us.  I think it's very important that we keep in mind the tremendous impact medical advances can have on someone's quality of life.  So often, even as a lay person, I find myself swimming in journal articles, reading through research publications, but it's great to see the human side told.  So many decisions in medicine come down to quantifiable factors, but the human factor needs to be continually brought to the forefront and should be given great weight, even though it cannot be physically weighed or measured.  These treatments are for people, so I'm glad to read stories that talk about people, and how they've been helped.  

Thank you, Henry, for continuing to do what you do, and I hope that all those in the medical research communities can remember for whom they do what they do and that their advances can result in real change in a person's life.    

Food Allergy Bloggers Conference - Ticket Giveaway!

If you haven't heard about the upcoming Food Allergy Bloggers Conference in November, check out my post about it and report back, please. :)

The awesome organizers of the event gave away a free conference ticket to the top fundraiser as of June 30th and I won, but instead of getting a refund on my ticket, I would like to give it away.  I want to give one of you wonderful people the opportunity to attend!  I understand that the winner of the ticket must still come up with airfare and hotel money, but I believe many attendees will be looking for roommates, and depending on the distance, Las Vegas flights can be pretty economical, from most major airports.  Someone out there might even live close enough to drive!  I really believe in this conference and in the power of meeting up with those who "get it", so I'd like to help make that happen for someone, if I can.  It's a straightforward Rafflecopter drawing, with various ways to gain entries, and the winner will be chosen at random.  (This raffle is meant for those who do not already have a ticket to the conference.  I will be verifying entries.  If one of your entries is missing, check your entry and try, again.)

I wish you the best of luck!
I want YOU to go to the Food Allergy Bloggers Conference

a Rafflecopter giveaway

Another way to try and win a ticket to the conference, is to be the top fundraiser for the Las Vegas FARE Walk, for the month of July.  You can join the Food Allergy Bloggers team (again, you don't need to be a blogger, it's just the team name and you also don't need to be present at the walk.)

Saturday, July 13, 2013

Peanut Allergy Resolution Likelihood Drops After Age 8

This post is a continuation of my discussion of my daughter's latest blood test results, though not the one on the additional test results, as I am waiting for a call back from the allergist.  This is a further discussion of her "whole peanut" results and a AAAAI article that was just posted on AllergyMoms' Facebook page.
Peanut Allergy Fade
Edited peanut image from WhatCanIPaint.com
The title reads, "Spontaneous resolution of peanut allergy decreases after 8 years old."

So, to me, this starts a countdown timer in my mind, since my daughter is almost exactly 4 years and 8 months old.  We have a theoretical 3-year-and-4-month window, where her chances look better for the resolution of her peanut allergy.  Technically, I guess I should call it her "peanut sensitization", as she has never eaten a peanut in her life, but her Ara h 2 values are pretty convincing that she should not even do a challenge at this point.

Anyway, these are the interesting points I found in the article: (bold emphasis added by me)
"In a recent study published in The Journal of Allergy and Clinical Immunology: In Practice, Bégin et al, report on data from 202 participants who were followed longitudinally for 12 years after an early diagnosis of peanut allergy (median 12 months). Resolution was confirmed by double blind placebo controlled food challenge offered to subjects with specific IgE lower than 15 ku/L."
First off, I find it interesting that they decided to challenge those with sIgE lower than 15 kU/L.  I thought they usually waited until it dropped below 2 kU/L or even to <0.35 kU/L.  If you read my previous post, you'll see that her PN sIgE dropped from 95.6 to 57.3 to 26, most recently.  If it continues at this rate, perhaps she'd be in a position to attempt a challenge in a couple of years.  (If I can summon the nerve!)

The article goes on to state:
"During the study period, 51 subjects (25%) were found to resolve their peanut allergy. Most resolutions (80%) occurred before age 8 with mean annual rates of 6.6, 2.2, and 0.6 per 100 patients per year between ages 3 to 6, 6 to 10, and 10 to 15, respectively. As expected in infants, initial specific IgE levels were generally low at diagnosis, but they increased rapidly in persisters while they remained low in remitters. In addition to having low initial peanut specific IgE at diagnosis (<0.7 ku/L), strict avoidance of traces was also independently associated with increased chances of spontaneous resolution."
Now, from this I gather, that as the children age, the chances of remission drop.  It's more promising if they had low sIgE to being with, which is not the case for my daughter, but her levels are not on an upward trend, at least, as they've seen in "persisters".  I also find it promising that "strict avoidance of traces" was also found to help chances of spontaneous resolution.  I am pretty strict when it comes to avoidance of traces, most definitely when it comes to ingestion.  I call EVERY company before my daughter eats a product and usually the iffy situations relate to flax or something else non-Top 8, but never peanut.

I understand that this is all conjecture and I am not truly getting my hopes up, but analyzing data, crunching numbers and looking for trends helps to calm my nerves, sometimes.  The truth is absolutely anything can happen.  She could turn 15 and have spontaneous remission, or it might be a lifelong allergy.  Even if her peanut allergy vanished, we'd still have milk, eggs, tree nuts, etc., to deal with, though I can't say taking peanuts off the list, some day, would not be a great relief.

These are just some of the thoughts in my head, from reading that article, with no exact point.  Thanks for reading, and I welcome your thoughts, too.  

Fluffy Allergy-Friendly Biscuits - Gluten-Free, Egg-Free, Milk-Free

I have mentioned, before, that I am not the world's greatest chef/baker, but from time to time, I have some successes.  So many times, I have had biscuits and baked goods come out too thick or hard as a rock.  Today, I want to share a successful recipe with you!

The key ingredient to this recipe is Bisquick Gluten-Free Baking Mix.  There is just something magical about this stuff!  It took me a while to settle the mystery of whether there was a flax seed cross-contamination issue with it, but I received confirmation from them, stating the following:
"We have verified that the Bisquick Gluten Free product does not contain flax seed and is not manufactured on the production line with products that contain flax seed.

Our products are labeled for the top 8 allergens (peanuts, tree nuts, dairy products, eggs, soy, wheat, crustaceans, and fish) plus sesame, sunflower and mollusks. We label for these allergens using CONTAINS and/or MAY CONTAIN lists located directly below the product’s ingredient list.
CONTAINS means that the allergen(s) is included in the product’s recipe. The allergen(s) will be listed in the ingredient list, and also in the CONTAINS statement just below the ingredient list.
MAY CONTAIN means that the allergen(s) is not in the product’s recipe but could be present as result of the manufacturing process regardless of our best efforts to exclude it. These allergens will not be included in the ingredient list.

Both CONTAINS and MAY CONTAIN mean that if you are sensitive to the specific allergen(s) in the list, no matter which way it is listed, you should avoid this product.

This ingredient and allergen information is for the package in hand. It is not intended for other packages of the same product. Ingredients may vary from one package to another due to product reformulation. If you have allergy concerns, please carefully read the ingredient information on each package."
Given the above information, please note that the Bisquick Gluten-Free Baking Mix has a "MAY CONTAIN SOY INGREDIENTS" warning.
Bisquick Gluten Free Baking Mix
Product ingredients/formulations
can change without notice.
Read the label EVERY TIME!
I made substitutions to the recipe for biscuits, on the back of the Bisquick GF box.  Instead of milk, I used original rice milk.  I used Spectrum for the shortening.  To substitute 3 eggs, I made 2 "eggs" using Ener-G egg replacer and for the 3rd "egg", I used 1/4 cup of sweet potato baby food.

The recipe is as follows:
Fluffy Allergy Friendly Biscuits - Egg-Free, Milk-Free, Wheat-Free, Gluten-Free
Fluffy Allergy-Friendly Biscuits - Gluten-Free, Egg-Free, Milk-Free
2 cups Bisquick Gluten-Free Baking Mix
1/3 cup Spectrum Organic Shortening
1 T. Ener-G Egg Replacer, combined with 4 T. very warm water
1/4 cup sweet potato baby food, or other safe puree
2/3 cup original flavor rice milk, or other safe non-dairy milk

Place baking mix in a large bowl and cut in shortening with a pastry blender, or fork/knife.
Prepare egg replacer, and add to bowl, 
along with sweet potato puree and rice milk.
Blend until a soft dough forms.
Using a large cookie scoop, place dough on a prepared baking pan, lined with parchment paper.

Bake at 400ºF for 13-17 minutes.

Given the limited list of ingredients we have to work with, I'm always happy when a recipe works out!  I hope it works out for you, as well.  Enjoy! :)

Tuesday, July 9, 2013

PlanetBox Bento Lunch Box

I have been meaning to write a post about the PlanetBox I got for my daughter, a while back, but as always, times flies on by, and the "to-blog" list grows.  Then, my friend sent me a post she wrote comparing the many "bento"-style lunch boxes she has used and reviewed and that presented an opportunity for me to share her post, and discuss my love for the PlanetBox!

As a mother of a child with multiple food allergies, I have to take my daughter's food everywhere we go.  I feel it is just too risky for her to eat outside food.  I have yet to find a restaurant that I am willing to trust with her life.  I know the day will come when I will have to take the leap of faith, but she is 4 1/2 and is perfectly fine with eating the meals I pack, and I will attempt to get away with that, as long as possible!  

I wanted something that didn't have a lot of pieces, and that was easy to maintain.  The PlanetBox ended up being the choice for me.  Another friend of mine had the PlanetBox and I had seen pictures of it in action.  I liked that I wouldn't have to be searching for and opening a bunch of lids for the various compartments, except for the optional "satellite dishes".  It's really easy to clean, too!  This has worked out so much easier, than my previous method of packing all her different items in different plastic tubs, zipper bags, etc., then trying to find a bag of ice to keep them cold, etc.  I bought the optional cool pack that is available for the PlanetBox, and it fits right into the lid of the insulated carrying case.  Now, once we get somewhere, I just unzip it, open the lid(s), and she's ready to eat!  When we're done, I just dump out the uneaten portion, close it up, and we're off to the next activity!  I know this particular system is not cheap, but it is very durable, and worth the amount of hassle it saves me.

I think this might need a Keeley McGuire makeover. ;)
So, the PlanetBox is the one for us, but please head on over to my friend's post and read her thorough run-down of the various bento lunch box systems and see which one suits you.  Then, head on over to Keeley McGuire's blog, to check out some allergy-friendly lunch ideas that look super cute!

Note: I did not receive any compensation for this post.  I always provide my honest opinion. :) 

Saturday, July 6, 2013

Allergy Testing Update - 3 Years Since Initial Testing

Well, I took my daughter to the allergist for her follow-up appointment and we got our orders for some more blood tests.  Even though I felt I learned the lesson I described in "Part 3" of my series of posts on food allergy blood testing, I just could not help myself from testing a few foods, before having my daughter try them.  I also re-tested some known allergens, so I could keep track of trends, over time.

Now, I know better than to get my hopes up too high and I am the first one to explain to people that the slight fluctuations of blood tests results really don't mean much, but I must say I was a bit pleased to see the drop in my daughter's values for peanut and milk.  I understand that these numbers are still high and that we can't even think of considering an allergist-supervised challenge, until they drop under 2 kU/L, or preferably <0.35, but let me just daydream here a bit and enjoy the downward trajectory of these numbers...

Another thing to note, is that you cannot usually compare values between different test types, performed by different labs, so I must state that the first 2 values for the peanut chart were done by Quest Diagnostics, the 3rd was done directly by Phadia, as part of the uKnow Molecular Allergy testing and the 4th was done by CPL Labs.  However, they are all Phadia ImmunoCAP tests.  The rise in numbers for both peanut and milk might have been because she had experienced anaphylaxis in between those two test points, and I've heard that can happen.  I'm just particularly struck by the big difference between her highest value and her most recent value.  Even if they were different labs, calibration differences would not be that far off, between two labs, performing the same kind of test, would they?  (I would welcome any input...)

For the milk values, again, I am struck by the drop, but still not in any way believing that this means anything, at this point.  Her numbers still have a long way to fall.  I guess I'm just looking for something to be positive about, but really, I know that even if the numbers went up, as they did at the second blood draw, that doesn't tell the whole story. 

Another (hopefully) promising thing I saw was that her Total IgE has dropped over time.  When tested at 18 months of age, it was 740.  When tested this time, at age 4 1/2, it was 393.  That's about a 47% drop.  Again, 393 is still way above the desired range of 60 or below, but we're moving in the right direction!

It's certainly a long waiting game...We're either waiting for tolerance to develop or a cure.  To quote some songs that come to mind: (comma added to the first song)
"You can't hurry, love
No, you just have to wait
You got to trust, give it time
No matter how long it takes"
"The waiting is the hardest part
Every day you see one more card
You take it on faith, you take it to the heart
The waiting is the hardest part"

I'm going to cover the rest of the test results in a separate post, to keep my posts to a manageable size.  Thank you for reading and if you have any input/insights/comments, I'd love to read them, as always!  

Friday, July 5, 2013

Independence from Food Restrictions...and Fear

I recently joined a new online community at Freedible.com.  It's a place for people with food allergies, intolerances, special diets, etc., to come together and learn/share/explore with other like-minded people.  Here is a great post by Making it Milk Free (right-click and Open link in new tab, so you can read it next!) that really expresses how I feel about the silver lining of having a child with food allergies and also offers a great description of Freedible.

For the 4th of July festivities, Freedible has started a campaign: Declare Your Independence from Food Restrictions.  We're encouraged to share about how we're not letting food restrictions hold us back.  This is something that I have to work on, constantly.

A good friend invited us over to a gathering for the 4th of July and I was excited, while simultaneously having a pit in my stomach, because it was a potluck BBQ, which can be a source of anxiety for those with children with food allergies.  In the days leading up to the party, the negative thoughts stacked up..."There will be food EVERYWHERE!  There will be mosquitoes!  The nearest hospital is 15 miles away!"  I had to shush those thoughts and focus on what I was going to do to manage all the things I needed to manage, so that we could go to this event, instead of letting my brain make a runaway list of reasons why we couldn't go.  

All my worrying and fretting was for naught, though, because this party was filled with friends who know about my daughter's allergies and were looking out for her.  My friend, the host of the party, was compassionately concerned about my daughter's comfort and well-being and I was really touched and ever so grateful.  This was her party, and on top of all the stresses that go along with having a big event at your house, she was thinking of my little girl's safety, and the safety and comfort of all of her guests.  There was a potluck dish that contained pistachios and she asked if I thought it would be OK to serve.  I was a bit hesitant, thinking of nutty hands walking about and she just put it away in the fridge and saved it for later.  That was so sweet of her to put my mind at ease, like that.  

My other friends were helpful, too, helping me out at different points during the party and I was, again, reminded of how lucky I am to be surrounded by such thoughtful people.  I don't take their kindnesses and thoughtfulness for granted!
A group of thoughtful, caring, crazy, funny, sweet ladies!
 As for the mosquitoes, they had citronella torches all around and I don't think I saw a single one!  My daughter had a blast playing on the water slide, and the trampoline, as well.  She was even the topper for a human pyramid that was made as part of a photographic scavenger hunt!  I'd say she had a really good time! :)
See, my friends are LITERALLY very supportive!! ;)

I made two things to bring to the potluck - gluten-free corn muffins and U.S. flag-themed cake balls.
Gluten-Free Cornbread Muffins (HEB brand mix)
Just added applesauce, canola oil and rice milk...
Trying to come up with something "red, white & blue" is not so easy when you don't use artificial food coloring.  I had trialed raspberries and blueberries and she doesn't appear to be allergic to them, but she just really didn't enjoy them, much, either.  "Too tart," she said.  However, since they were declared "safe", I could use them for my red and blue colors.  I remembered that I had a cupcake carrier that had these little circles for holding the cupcakes still.  It has a 12-slot side and a 24-slot side.  I decided I would make cake pops and glaze them with raspberry icing, vanilla icing, and then add blueberries for the "flag" corner, since grinding up blueberries apparently doesn't make blue, as I found out.  Ha!  (I am NOT a master chef or baker, by any means!  I just do a lot of trial and error and hope for the best!)

So, for the cake pops, I used my cake pop machine and recipe, which can be found in this post.  For the raspberry glaze, I used a recipe I found here.  (I mashed the raspberries through a strainer, as the page suggested, which took a little time, but it was worth it, because there are so many seeds!)  For the vanilla icing, I just mixed Domino powdered sugar, with vanilla rice milk and vanilla powder.  I "eyeballed" it, so I don't have exact measurements.  For the blueberry ones, I placed one blueberry on top, then cut the other blueberries in half, but not all the way, and placed them around the center to form a pattern.  I made sure the choose small blueberries, because if they were too big, they'd start sliding down the cake ball.  I also dried them with a paper towel, for the same reason.  Another thing I had to do was glaze them on a separate place and transfer them to the carrying tray.  Otherwise, the icing would run all over the tray.

SWEET Land of Liberty
This big party was a big success and I am so thankful to my friends for making it a fun and most importantly, SAFE, gathering, that my daughter thoroughly enjoyed.  Letting go of so much of that fear is a special kind of freedom!