Allergy Shmallergy

Simplifying life for families with food allergies.

Auvi-Q’s Returning to Market With an Innovative New Approach January 23, 2017

Oh, happy day!

auvi-q-production-line

Auvi-Q is coming back to market on February 14, 2017!

As many of you already know, Auvi-Q is an innovative, FDA-approved epinephrine auto-injector that is about the size of a deck of cards.  Auvi-Q was invented by twin brothers, Eric and Evan Edwards, who suffered from severe, life-threatening food allergies as children. Eric Edwards, an MD, and Evan Edwards, an engineer, teamed up as adults to invent this unique and effective life-saving device.

 

This product has a very valuable place on the market:

  • It fits in your pocket – making a great choices for dads, preteens and teens;
  • It speaks the instructions, step-by-step – reducing the worry over training and operation;
  • Auvi-Q’s needle retracts immediately after injection, mitigating the possibility of lacerations and making it safe to handle.

 

But that’s not even the best part.  Not only are Eric and Evan patients, they’re also food allergy parents who understand the needs of our community from a unique, first-hand perspective.  After speaking to patients and considering their own family’s needs, they wanted to ensure all families had access to and could afford their product.  So they are introducing AffordAbility, a first-of-its-kind program under which the vast majority of patients (including those with high deductibles) can obtain Auvi-Q for $0.  And, not only will the product be free for so many patients, but Auvi-Q will also be available for direct-delivery to your home (in most cases, in less than 48 hours in insulated packaging).

 

The makers of Auvi-Q, kaléo Pharma, wanted to remove as many of the barriers families face in order to ensure that the patients who needed this life-saving medication would be able to obtain it.  No family should have fear they are unprepared to help in a life-or-death severe allergic reaction such as anaphylaxis.

 

The Auvi-Q website is a wealth of information: Auvi-Q.com.  Please refer to it for further questions the device, prescription, the AffordAbility program, and direct delivery service.

 

 

 

Holiday Stress? 4 Tips for Celebrating with Less Than Supportive Family December 14, 2016

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I hear from so many readers this time of year who just need to vent.   Reports of disappointment and frustration frequently get voiced over extended family that isn’t supportive – or, in extreme cases, is totally defiant of – a family’s food allergy concerns.

 

These incidents often center around the holiday table – at a time of year when parent anxiety can be heightened and when all parents put extra pressure on themselves to make the holidays magical for their children.  Family gatherings are typically filled with unspoken expectations.  Which is why it can be doubly disappointing (and sometimes volatile) when things go wrong.

 

Here are a few tips and tricks to help you relax and have fun with your extended family and friends as you celebrate this season:

 

  1.  Educate:  Many adults did not grow up knowing a single person with food allergies.  What comes off as careless to those of us who live this reality, may simply be a matter of ignorance.  A little education may go a long way.  If you want to start that process before you arrive, suggest they watch the Discovery Channel documentary, “Emerging Epidemic: Food Allergies in America.”
  2. Distract and Enjoy:  Perhaps you have a history of issues surrounding meals with your food allergies. If you know your family and your food allergies will not mix, don’t forego the time spent together.  Maybe you can host or help cook the meal.  Maybe you skip the meal and instead all go ice skating or sledding or on the hunt for the best Christmas lights in town.  New traditions will forge new memories!
  3. Be Flexible:  When it comes to the meal, we know you cannot compromise on safety.  Nor should you.  But if you can compromise on other parts of your visit, that may help reduce stress for all.  Be flexible when you can.
  4. Focus on Family:  Just remember that family relationships are important.  Not just to you but to your children.  Try to strengthen that relationship by creating positive memories throughout the year.  Having strong family bonds will defuse the anxiety and expectations of the holidays.

 

For further information about how to navigate family dynamics, please read Food Allergies and Family: Disagreements Not Break-Ups.

 

Motivations: Food Allergy Baker, Nicole Seevers and Cole’s Moveable Feast August 29, 2016

Filed under: Holiday,Order & Ship,Parent Sanity,Uncategorized — malawer @ 3:45 am

 

My hats are off to all the parents out there who are taking time out of their lives to make life better for all of us with food allergies.

 

I’d like to introduce you to one such parent, fellow food allergy mom, Nicole Seevers of Cole’s Moveable Feast.  On a quest to ensure her son always feels included, she began experimenting in the kitchen.  The results aren’t just safe and delicious for her son, Cole; they are scrumptious for everyone!

 

We were the lucky recipients of the above OUTSTANDING allergy-friendly dessert: iced tea cupcakes with lemonade frosting – possibly my favorite flavor combination of all time. I opened the box and thought they might be almost too beautiful to eat.  Almost.  Their mouth-watering aroma sucked me in immediately.  I’m usually more of a frosting girl (and, oh my gosh, was this frosting good), but it was the moist and tasty cake that balanced the tart and sweet original frosting so well that just made the treat.  My kids loved them and my extended family had no idea they were made without wheat, dairy, peanuts or tree nuts.  I’m planning on ordering these again for my next brunch.  And my food allergic son has requested I call Nicole for his next birthday.  That’s ONE thing off my party planning list!

 

Nicole can cater to almost any allergy and any occasion.  Check out her gallery of goodies at Cole’s Moveable Feast.  And, for those outside her delivery area, please check out our ever-growing list of allergy-friendly bakeries on Allergy Shmallergy’s Allergy Friendly Bakeries page.

 

Inspired by her story and motivation, I took a moment to ask Nicole a few questions…

 

1.  Tell us about how you got into the baking business?  Were you always a baker?
Not long ago, a lot of my friends and family would have been surprised to see the word ‘baker’ connected to my name.  I grew up here in Virginia, and like most people, food was a big part of my family life.  My mom and my grandmother were wonderful cooks, and the desserts were especially good. I learned a lot from them, but it wasn’t a passion for me. I headed to New York after college and stayed there for 12 years, practicing law and eating a majority of my meals in restaurants. My husband is a great cook, but it was never really my thing.  When we did eat at home, I was usually in charge of dessert (I have a big sweet tooth). But things got more complicated when our second child was born.

 

2.  What inspired you to bake allergy-friendly goods?
My son Cole. As soon as we introduced solid food, we knew. His first taste of yogurt made him sick. He vomited and started wheezing. Eggs did the same thing. Over the course of the next few months, we learned he was allergic to dairy, eggs, tree nuts, buckwheat, sesame and shellfish. He also has asthma and spent nearly a year avoiding gluten to try to reduce inflammation. I think under normal circumstances, it could have been overwhelming, especially for someone who didn’t spend a lot of time in the kitchen. But I had watched my own mom handle it. My younger brother struggled with the same allergies and more … including wheat, soy and corn. Those are tough allergies anyway, and in the ’70s, there was no popping into Whole Foods for an allergy-free snack. But my mom rolled up her sleeves and dealt with it.

So for me, it meant figuring out how to make sure Cole didn’t feel deprived or left out. Celebrations are big in our family. I wanted to learn how to make treats we could all enjoy. And it turns out, I LOVED baking. But what about when Cole was invited to a birthday party? Or when he started school, and had to say ‘no thanks’ every time a parent brought in cupcakes for a celebration. I was spending so much money on expensive, processed snack foods that were allergy-friendly but kind of bland. I thought, I can’t be the only one who wants better options. So this spring, I launched Cole’s Moveable Feast.

 

3.  Do you cater only to the food allergic community?
At first I did, but then people started asking me to do “regular” cakes for their events also.  But I’d say 90% of what I do is customized around specific allergies. Frankly, I like some of my allergy-free goodies more than the regular kind! I probably shouldn’t admit that, huh?

 

4.  What are some of your biggest challenges in the kitchen?
Time and space! It’s me, one oven, one dishwasher and two mixers.  I have a separate pantry and fridge for bakery ingredients and dedicated cabinets for equipment. But allergy-free recipes, especially those without gluten or eggs, require additional steps and ingredients, so it takes longer and makes a bigger mess.  And I’m fastidious about sanitizing surfaces and equipment, especially between orders. That takes more time than you’d think. So I’m starting to think about next steps … my dream is a bakery where anyone can walk in and find something on the menu board. Cole has never experienced that.

 

5.  Is there any allergen/other obstacle you’ve had a hard time accommodating?  How do/did you overcome obstacles?
Oh yeah. It’s hard enough to bake without egg, dairy and gluten. In fact, I had to come up with my own gluten-free flour blends and egg substitutes, because I just couldn’t get my baked goods where I wanted them with commercially-available substitutes. But when you take soy and corn out of the equation, it gets even harder. Those ingredients are everywhere because they’re cheap (and genetically-modified and federally-subsidized, but that’s a rant for a different day). But I’ve gotten there, after lots of research and working closely with my customers … and throwing out a TON of failed experiments. I am so thankful for the Internet, for all those people that forged ahead of me and blogged about it. And for companies like Earth Balance, Authentic Foods and Enjoy Life, among others, that are dedicated to producing high-quality allergy-free ingredients.

 

6.  Has taking customized orders forged a connection to your clients?
YES! That was the biggest surprise in all of this. I figured, if I got lucky, word would get out and I’d get a nice flow of orders listing the ingredients that needed to be excluded. I didn’t realize that nearly every single order would come with a unique story. The mother that was told a party venue could handle her child’s food allergies … until they heard it was soy. The child with a severely restricted diet that hasn’t had cake in years. The adult struggling with health issues. Everyone has something they’re dealing with, but we’re wired to connect and comfort, love and celebrate, through FOOD. When I can be part of that connection, it’s  awesome. Baking for someone can be a very intimate act.

 

7.  What has been the most rewarding aspect of starting your company?
Well first and foremost, it’s that connection I was talking about. I really can’t believe I get to do this. Meet interesting people, help them out, bake and get paid for it?! It’s pushing me out of my comfort zone, forcing me to connect, solve puzzles, make mistakes, rethink. But also, my three kids are SO excited about it.  I love letting them be a part of this, letting them witness the fact that you can find what brings you joy and go after it.  My dad has always pushed me to do that: to have a vision and do the hard work to make it happen. I want my kids to learn that lesson too.

 

 

The Ins and Outs of Reading Food Labels August 23, 2016

Filed under: Books and Literature,Parent Sanity,Preparedness,School — malawer @ 9:30 am

 

Here’s the latest article I wrote for Allergy & Asthma Today (Fall 2016), a publication from Allergy and Asthma Network.

 

Look at the beautiful layout and graphics here:  The Ins and Outs of Reading Food Labels.  And, check out the full issue, featuring Sarah Jessica Parker here:  Allergy & Asthma Today, Fall 2016.


 

Hibiscus Popsicle, uploaded by JohnnyMrNinja, author Joey  

 

When my son was in first grade, he joined his class in celebrating the completion of a school-wide charity project. All the students were so proud and the faculty even more so. The teachers planned to reward the students with popsicles — just the kind of unexpected treat kids live for!

 

Knowing my son’s food allergies, the teacher went to the administrative offices to check the ingredients. The coordinator read off the ingredient list one by one, all safe relative to my son’s peanut, tree nut and dairy allergies. And then she read a final statement, “Contains trace amounts of milk…”

 

“So that should be fine,” the coordinator said.

 

“NO!” replied his teacher, who also has food allergies. “He’s allergic to dairy! Milk is dairy!”

 

My son avoided an allergic reaction that day thanks to his teacher’s quick thinking and familiarity with reading food labels.

 

Many parents, teachers, school nurses and administrators are called upon to make food allergy decisions based on food labels. Deciphering ingredients and warning statements can sometimes feel like reading a foreign language.

 

Understanding the requirements that govern food allergy labeling makes those decisions much easier. In 2006, the Food Allergen Labeling and Consumer Protection Act (FALCPA) went into effect with the goal of improving food labeling information for families with food allergies.

 

  1. Under FALCPA, companies are required to label the top 8 allergens: milk, eggs, fish, shellfish, tree nuts, peanuts, wheat and soy. These account for 90% of food allergy reactions in the U.S.

 

  1.  FALCPA also requires companies to label any ingredients made with proteins derived from those allergens.

 

  1.  This law gives manufacturers a choice of how to label the food source allergen.  They can either: 1)  List the allergen in the ingredient list, such as “whey (milk) or lecithin (soy)”; or 2) Use a “Contains” statement, such as “Contains tree nuts, eggs and shellfish.”

 

  1. Manufacturers might use the same facility or equipment to produce two different food products, and if one is an allergen, there is potential for cross-contact. If the manufacturer thinks there’s a chance an allergen may be present in a food product, they can voluntarily put a “May contain…” or “Made in a facility with…” statement. For example, a soy milk label might say “May contain tree nuts” if it was produced on the same equipment as almond milk.

You’ll need to be extra diligent when reading labels to avoid an ingredient outside of the top 8 allergens. Learn alternative names for your allergen that manufacturers sometimes use. For example, sesame seeds may be listed as “tahini” (which is sesame paste), benne seed or generically as “spices.”

Because manufacturers change their ingredients and production methods all the time and without warning, it is very important to read the labels every time you purchase an item.

And if you’re unsure about what’s in a food product but still want to purchase it, call the manufacturer.

AAT Fall 2016

 

 

Summer Chic and Simple Food Allergy Solutions July 22, 2016

Filed under: Parent Sanity,Preparedness,Travel — malawer @ 4:39 pm

It’s hot out there! And, as you know, carrying epinephrine is tricky in warm weather. Here’s how I’m carrying my son’s epinephrine autoinjectors these days.

 

Because the heat is intense these days, be sure to pack your epinephrine in some kind of cooler when you’re outside. Ideally, epinephrine should be stored at 77 degrees F. (25° Celsius). But while you’re out and about, manufacturers recommend that epinephrine be kept between 59° and 86°F.

 

I recently found this cute, envelope shaped cooler bag in our local supermarket for under $5.   It’s stylish on its own (like a clutch!) and fits nicely in both my purse and pool bag.  A similar style can be found here:  Igloo Lunch Clutch.

I stick a lunch box sized cooler pack in the insulated cooler bag, throw in my Emergency On-The-Go Pack already stocked with my son’s autoinjectors (or wrap them in a kitchen towel) to keep them right around room temperature.  Sometimes, I’ll throw in a juice box (someone always wants one anyway) to create a buffer between the cooler pack and epinephrine.

 

Stylish AND safe!

Igloo Clutch with my Emergency On-The-Go Pack

 

Everything fits perfectly!

 

Save

 

Food Allergies and Family – Disagreements Not Break-Ups April 12, 2016

I hear stories all the time from food allergy parents that their family members aren’t taking their child’s food allergy seriously.  And, this – of course – can have serious implications.  I’m also saddened to hear when this difference in perspective leads to family disagreements – or worse, families cutting one another off completely.

 

Our parents (our children’s grandparents) didn’t grow up with this alarming rate of food allergy.  In fact, many of them didn’t know a single person with a diagnosed food allergy.  Times have changes and current parenting is more active and vigilant than it was 30 years ago.  I’ve explained to many a grandparent that the rise in food allergies is not a trend of parent over-sensitivity or as a result of over-protectiveness, but -in fact- an actual, black and white medical diagnosis.

 

Grandparents and other family members may not understand the amount of work and preparation it takes to safely raise a child with a severe food allergy: the advanced preparation when eating out; repeated education of others; familiarity with labeling laws (such as the FDA’s FALCPA in the United States), alternative names for allergens and a general sense of where it might pop up and cause problems; the worry about our kids and the exclusion we fear they face.  Let’s face it, none of us were prepared for the intense amount of work prior to our family’s first food allergy diagnosis.

 

If there’s one thing I know for sure though, it’s that a parent’s love for their child is fierce.  It knows no bounds.  As food allergic parents, that fierce love we have for our children and our instinct to protect them may come off a little strong.  And, understandably so when we feel like their lives are in danger.  But in the face of difficult decision-making, our anxiety over their well-being may not offer the patient, gentle voice that our family and friends need in order to truly hear our concerns.

 

It doesn’t help that food allergy parents feel disrespected when their own parents don’t fully abide by or outright disregard their guidance about how to feed (and therefore protect) their children.  Food allergy parents can feel betrayed when others are unwilling to make changes to protect their children.

 

So, what can you do when you’re at odds with your family over your child’s food allergies? 

 

First, have a kind but firm talk about the allergies and severity of the possible reactions.  Do this when your child is not present.  Expect a lot of questions, so come prepared with answers from your allergist or pediatrician.  Bottom line: be informative and remain calm.

 

Reminder: don’t put your parents (…siblings, friends…) on the defensive.  Remember the “I” statements you were taught in school.  Now’s the time to employ them.  In essence, phrase your emotions with “I feel…”  rather than pointedly, “You” statements.  “I’m worried that Charlie will have a dangerous allergic reaction because he’s a toddler who doesn’t know the difference between peanuts and raisins,” rather than “You’re not listening to me: put away the peanuts!”

 

Share your learning curve.  Relate to them by reminding yourself (and them) how overwhelmed you first felt when you first received your child’s diagnosis.  They probably feel this way too right now: they’re trying to take it all in and food allergies have likely seemed very far off and remote to them.

 

If necessary, spell out the seriousness.  It can be hard to truly admit – most especially to yourself – the possibility of a severe food allergic reaction and its real consequences.  I have a lump in my throat just writing about it.  Watch the Discovery Channel’s 2013 documentary “Emerging Epidemic: Food Allergies in America” with your parents and siblings (again without the kids present).  The first 10 minutes of this multifaceted documentary deal with an anaphylactic reaction and is a firsthand example of the dangers of food allergies.

 

Remember that old habits die hard.  Most habits are not malicious, but they can be dangerous.  My own father had a nightly habit of snacking on a bowl of nuts, which he continued to do unconsciously when we visited.  When my son could crawl, I reminded him again that this wasn’t safe.  I was frustrated having to restate this every visit, so to drive the point home, I told him, “These nuts are like arsenic for my child.  Leaving them on the table is the equivalent of leaving a loaded gun for my toddler to figure out.”  It clicked immediately.  My dad apologized profusely and has since been phenomenally careful with my son’s allergies.

 

Invite them to a doctor’s appointment.  Allow them to ask as many questions as they have.  Maybe give your allergist or primary care physician a heads up so they know to allow a little extra time for questions and answers.  Hearing the information from a medical professional often underscores what you’ve been saying all along.  You know how your kids listen to their teachers but not you?  Your parents might be the same way.

 

Remind them that as much of an inconvenience as it is for them to adapt to your allergy-friendly lifestyle, assure them that it is SIGNIFICANTLY more so for you and your family.  Make it easier for them to navigate by suggesting some of the tips in The Host’s Guide to AllergiesThe Host’s Guide: Part II; and the Host’s Guide: Part III.

 

Invite them to participate in your lives by organizing activities that DO NOT revolve around food or meals.  I know that’s hard when we talk of family because food and socializing traditionally go hand-in-hand.  But, there’s no need to sacrifice your relationship with even the most obstinate family member – just take away the point of contention:  food.  I know that tensions can flare in the process of trying to win over someone’s mindset, but – by doing other things and removing the obstacle – perhaps you will both come to an understanding about your different perspectives.

 

Families are important.  They are our best cheerleaders.  They remind us of who we are and where we come from.  And, they teach our children all kinds of lessons we can’t impart alone.  By trying to handle differing opinions over a difficult issue like a child’s food allergies in a calm and collected way, we are also modeling great conflict resolution to our kids who pick up on more than we’d like to believe.

 

Food allergy parents need support too.  Parenting is hard.  Parenting a child with life-threatening allergies to something as common as food makes it exponentially more challenging.  Families should be there to help out and pat us on the back for encouragement, to give us a cup of coffee (or glass of wine) after a particularly rough day.  And they should be available to envelope our kids in love, support and safety so they grow up to be confident, self-assured adults with loving families of their own.

 

 

 

 

Connect: We’re All Just a Phone Call Away January 16, 2015

Filed under: Parent Sanity — malawer @ 11:30 am
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Although a growing issue, food allergies have a way of making people feel alone, isolated and different.  My son often feels like the only kid who can’t eat the bread or dessert out at meals.  He’s the one worrying about whether the birthday treat will be safe for him and quietly left feeling excluded from the fun.  But I also feel alone sometimes:  I’m the person silently, but constantly, weighing the risks of every move we make throughout every day of the year; thinking five steps ahead to protect my child’s health.

Let’s face it, having a food allergy isn’t easy.  And, parenting a child with food allergies is stressful.  Sometimes you just need to talk to someone who inherently understands your life.

I was reminded of that recently, when I consulted with someone whose son is about to start kindergarten.  I remember the considerations we had to take into account at that time and the stress it stirred going from a nut-free school to one that is sensitive to nuts, but does not ban them.  I was more than happy to help out in any way I could.  I was glad to let her vent her frustrations, address her concerns and pass along some of our hard-earned lessons.  It feels good to pay it forward as I, too, call upon other moms and doctors for advice and reality checks.

They say it takes a village to raise a child.  But that village doesn’t just support the child, it strengthens the parents.  The village’s collective education, creativity and spirit ensure you don’t have to go it alone.  When you’re feeling turned around or exasperated, the village is there with a cup of coffee (or, in my case, a bowl of ice cream), some calming words and a hug.

I encourage you all to reach out to other food allergic parents and pose questions, offer advice, voice your aggravations, exchange recipes, share ideas, and just generally encourage one another.  And, if you don’t know another food allergy parent, feel free to contact me.  Please visit Allergy Shmallergy’s facebook page where you are welcome to post questions to me and one another, arrange meet up groups, swap great ideas and generally just connect with and support one another.

Thank you for being part of my village.

 

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