Allergy Shmallergy

Simplifying life for families with food allergies.

The Dangers of a Dairy Allergy November 17, 2017

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Three year old, Elijah Silvera, was attending a regular day of preschool in New York City recently, when preschool workers fed him a grilled cheese sandwich despite school papers which formally documented his severe dairy allergy.  Elijah had a severe allergic reaction and went into anaphylaxis.  Standard procedure for anaphylaxis is to administer epinephrine and call 911 immediately.  Instead, the school called Elijah’s mother, who picked up her child and drove him to the hospital herself.  Doctors in the emergency room tried but were unable to save him.

 

Dairy allergy is the most common food allergy among young children.  And, although the peanut can produce some of the most severe allergic reactions (as well as some of the most tragic headlines), an allergy to milk products can be life-threatening.  The myth that a dairy allergy is not serious and doesn’t require as much vigilance causes great frustration to many who are allergic to milk, as does the idea that a food is “allergy free” if it does not contain nuts. To those who live with it, a dairy allergy requires an enormous amount of preparation and education since milk is an ingredient in so many products.

 

Dairy is cow’s milk and found in all cow’s milk products, such as cream, butter, cheese, and yogurt.  Doctors sometimes advise patients with a dairy allergy to avoid other animals’ milk (such as goat) because the protein it contains may be similar to cow and could cause a reaction.  Reactions to dairy vary from hives and itching to swelling and vomiting, to more severe symptoms such as wheezing, difficulty breathing, and anaphylaxis.  Strictly avoiding products containing milk is the best way to prevent a reaction.  The only way to help stop a severe food allergy reaction is with epinephrine; patients should always carry two epinephrine auto-injectors with them at all times.

 

Just like other allergens, cross contamination is a concern for those with a dairy allergy. Even a small amount of milk protein could be enough to cause a reaction. For example, butter and powdered cheese (like the kind you might find on potato chips) are easily spreadable in a pan, within a classroom or on a playground.  And, as with other allergens, hand sanitizer does NOT remove the proteins that cause allergic reactions.  Doctors recommend hand washing with good old soap and water – but wipes work in a pinch.

 

Those allergic to dairy must not only avoid food; they often have to look out for health and beauty products too.  Dairy can be found in vitamins, shampoo, and lotions.  It is critical to read the ingredient labels of every product you buy each time you buy it as ingredients and manufacturing procedures may change.

 

In the United States, any food product containing milk or a milk derivative must be listed as DAIRY or MILK under the current labeling laws (see The Ins and Outs of Reading Food Labels, Aug. 2016).  If you are living or traveling elsewhere, this list of some alternative names for dairy may be useful:

 

milk (in all forms: goat, whole, skim, 1%, 2%, evaporated, dry, condensed, etc)
butter (including artificial butter and margarine)
cream
buttermilk
sour cream
half and half
yogurt
cheese
ice cream
custard
sherbet
pudding
chocolate
ghee
whey (all forms)
casein
caseinates (all forms)
casein hydrolysate
lactose
lactulose
lactoferrin
lactalbumin (all forms)
diacetyl
rennet casein

 

Let’s spread the facts about dairy allergy so that our schools and teachers better understand how to accommodate and care for students with food allergies.   Any allergen can produce severe, life-threatening allergic reactions and all food allergies should be taken seriously and managed with attention.  I sincerely  hope that by informing others we can prevent another tragedy like the one the Silvera family was forced to experience.

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Important Story: FDA Warning to Mylan, Maker of the EpiPen, on Device Defects and Review November 6, 2017

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Earlier this fall, the FDA issued a warning to Mylan, the makers of EpiPens.  In a scathing letter, the FDA highlighted manufacturing defects as well as Mylan’s failure to conduct adequate internal reviews after receiving many complaints about the life-saving device, EpiPen’s malfunctions.  To date, there have been 7 deaths, 35 hospitalizations and 228 complaints about EpiPen and EpiPen Jr. devices this year.  [See F.D.A Accuses EpiPen Maker of Failing to Investigate Malfunctions, New York Times, Sept. 7, 2017]

 

Following an FDA inspection of the manufacturing plant, FDA’s letter to Mylan describes EpiPens that were leaking epinephrine and others that malfunctioned.  In March of this year, Mylan issued a recall of a small batch of EpiPen and EpiPen Jr devices.

 

While it is difficult to connect these defects to the deaths reported, as anaphylaxis itself can be deadly even with properly receiving epinephrine, these reports are not encouraging.

 

In February of this year, we had a frightening experience. [Please read the full story,  The Fire Drill- 5 Key Lessons from an Intensely Scary Night.]  Not long after eating at a restaurant, my 12 year old, food allergic son was rushed home, wheezing severely and coughing.  He was so weak and nauseous that he could barely stumble to the bathroom.  As I asked him questions, trying to evaluate the situation, it was becoming increasingly impossible for him to speak at all.  I wheeled around to grab my EpiPens just steps from where my son sat.  When I turned back around, he was blue.

 

This is every parent’s worst nightmare.  It was certainly mine.  Amidst the chaos of an increasingly critical and deteriorating situation, my only saving grace was that I held in my hand an EpiPen that would contain the correct amount of the life-saving drug, epinephrine and deliver it safely.

 

I can’t imagine being in that same moment now, knowing that the EpiPen in my hand may or may not save my son’s life.  That it may or may not have the right dose of medicine.  That the needle may or may not misfire.  Would the knowledge of EpiPen defects cause you to hesitate?  Would you instead call an ambulance that would take even more time to arrive?  When minutes matter, these short hesitations in action, improper delivery of medication, and any other complications that arise during anaphylaxis could be costly…. even deadly.

 

Bear in mind, Mylan has also increased the cost of EpiPen from $50 in 2008 to over $600 currently.  And, while the high cost of EpiPens are prohibitive, parents are still buying them, and they’re paying for one thing:  reassurance.  They pay for the firm knowledge that this product administers the correct amount of medicine properly every time.  If that can’t be demonstrated, there are plenty of other auto-injectors on the market with a proven track record of reliability to consider.

 

Despite these less-than-comforting reports, please continue to carry and use your EpiPens and other auto-injectors.  According to the FDA in a recent Bloomberg article, “We are not aware of defective EpiPens currently on the market and recommend that consumers use their prescribed epinephrine auto injector. We have seen circumstances in which adverse events reports increase once a safety issue is publicized, like a recall. We continue to monitor and investigate the adverse event reports we receive.”

 

I plan to keep you all informed as we continue to follow this story.

 

To read more on this story, please see EpiPen Failures Cited in Seven Deaths This Year, FDA Files Show posted on Bloomberg, Nov. 2, 2017.

 

Armed with Words: Teens and Food Allergies October 25, 2017

Ah… the teenage years!  Although my son is only 12 now, I can feel them coming on and am seeing a preview of the food allergy challenges we’ll be facing for the foreseeable future.

 

Teens and young adults with food allergies are at the greatest risk of having a reaction.  Risk taking behavior is all part of the teenage brain.  And when hormone changes, the desire to fit in and peer pressure are combined with food allergies, innocent situations can turn deadly.

 

Studies show that preadolescents and teens – who typically do not want to draw attention to themselves – shy away from mentioning their food allergies and often intentionally leave their emergency medication at home.

 

What can parents do?  Continue talking to your teen about his or her food allergies and the new situations they face.  Play out various scenarios and involve them in the problem solving.  Importantly, arm them with the language to use to avoid putting themselves at risk.  If we can give them some ways to deal with their food allergies in a smooth, off-handed manner, they may be more likely to self-advocate, speaking up when it matters.

 

Share your child’s go-to lines and we’ll include them below.

 

Practice these.  Make them your own: deliver the lines with humor, sarcasm, be nonchalant or matter-of-fact.  However you decide,  just speak up!

 

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Situation:  (Friends are at a restaurant/cafeteria/movie theater hanging out)  Mmm… Try some.  It’s so good and I think it’s nut-free.  Here have some!

Straightforward Reply:  That does look good.  But, I’m allergic to nuts.  I’d love to try it if it’s safe- is there an ingredient list?

Alternative Reply:  That’s a great looking [brownie, cookie, dumpling…etc].  I think I’m going to pass.  But, thanks for offering!
These approaches work because they alert your friends that you have an allergy and simply can’t eat things that aren’t safe.  But if they are persistent:

Situation Progresses:  Come on!  Have one little bite!!!

Reply: (Distract)  No chance.  But have you tried the donuts [or insert food – either at the location or elsewhere]?  They’re insane!

Reply:  A little bite can make me really sick.  I’d rather hang at this party/football game/movie than head to the hospital.  I’m good!

 

people-2593339_1920 pixabay StockSnap

Situation:  Your teen is worried about bringing his/her epinephrine auto-injectors out with their friends.

Reply:  Hey guys, I have my auto-injectors in this bag just in case anything happens.  Do you want to drop your phone or sweatshirt in here too?  Might as well fill it up!

Solution:  Carry two Auvi-Qs!  Each Auvi-Q is about the size of a deck of cards and can fit in most pockets.  You DO need to carry two – if necessary, place them in a jacket pocket.  And, let a trusted friend know they are there.

 

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Situation:  You’re at a restaurant/food court/concession stand with your friends. You need to ask several food allergy-related questions, but you’re embarrassed.

Reply: (to friends) I have to ask the manager a few questions.  I’ll be right back.
In this scenario, you can ask questions about ingredients without drawing attention to yourself.  Don’t miss the chance to eat safely and without worry or you’ll miss having fun with your friends!

Reply:  (Before you order… to your friends)  Hey, guys.  I’m going to need to ask a bunch of food allergy questions.  Do you want to order first?

OR:

Reply: (Before you order… to your friends)   Hey, guys.  I’m going to need to ask a bunch of food allergy questions.  Just keep talking so I don’t get nervous.  (Jokingly) You know I have stage fright!

 

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Situation:  You’re at your friend’s house.  Your friend’s mom offers to get you “something to eat.”  “I’ll grab you guys a snack!” she says, with no further description.

Reply:  I have a food allergy.  Do you have a piece of fruit I could eat?

OR:

Reply:  I have food allergies.  If you don’t mind, can I read some ingredient labels to see what’s safe for me?

OR:

Reply:  Thank you for offering, but I have a food allergy.   I’m okay for now.
OR:
I brought my own snack – all I need is a bowl/spoon/fork!

Parents love kids who take charge of themselves and are forthcoming with important information.  Telling an adult on-site that you have a food allergy gives you another layer of protection – a second set of eyes and someone to help if you feel you’re having a reaction.

Situation: A boy/girl you’ve been eyeing just asked you to go out for ice cream – but you have concerns about your food allergies at ice cream shops.  

Solution:  Find a coffee shop or restaurant with a similar fun feel that you know is safe and suggest you go there to hang out.

Solution:  Try an activity-based date.  Bowling, mini-golf, watching your school’s football game, seeing a band play, etc are sure to bring the fun without too much worry about food.

Reply:  I’m actually allergic to dairy/nuts/peanuts.  Would you mind if we tried this new frozen yogurt shop?  I’ve been dying to try their sorbet flavors!
Mentioning your allergies right away isn’t a deal breaker; it’s a way to ensure that you’ll feel relaxed on your date.  And when you’re more relaxed, you’re more likely to have fun!

 

Creating a Halloween for EVERYONE October 19, 2017

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Halloween is traditionally frightful.  Between the the ghosts and zombies milling about,  candy and party food shouldn’t be scary.  But the chaotic and exuberant fun of Halloween can be chilling for many families with food allergies.

 

Parents with food allergic children are justified in worrying when their kid comes face to face with his food allergy.  And, candy is full of allergens: dairy, peanuts, tree nuts, soy, wheat, corn, egg…  It’s a wonder we survive!

 

Here are a few ways to keep your sanity during the craziest night of the year:

 

  1. Prepare your kids:  Remind them not to eat anything while they are trick-or-treating.  Reading ingredient lists on tiny packages in the dark is challenging (to say the least).  There’s plenty of time to taste test their candy when they get home.
  2.  Go with them to the front door:  Help little ones choose safe candy at the front door.  Your presence is also a good place to reinforce all those lessons on manners while you’re there.
  3. Cash in the allergens: Keep a variety of safe substitute candy or treats at your house.  Offer to trade your child’s unsafe candy for your pre-approved substitutes.  If you’d rather your child ditch most of his candy, The Switch Witch is a fun and magical way to cash his or her candy in for a small gift.

     

  4. Be reminded that sometimes ingredients and/or manufacturing practices change when candy is miniaturized.  Make sure you read ingredient lists of everything, including candy that has been safe in a larger size.
  5. Participate in the Teal Pumpkin Project:  You’re familiar with all those wacky blue pumpkins, right?!  Teal pumpkins mean that house has non-candy treats to offer for food allergic children. Move over orange, teal is the new black!  You can spray paint your own pumpkin or purchase one to reuse, like this one:

     

    • Teal Pumpkin Decoration For Food Allergy Awareness
    6.  Stock toys AS treats:  Instead of candy (or in addition to safe candy), consider stocking fun toys and tattoos.  Even kids might admit that there is a limit to the amount of sugar they can consume and something that will last past Nov. 1st will be fun!  This Halloween set gives you a variety of toys in one order – bonus!

 

  • 156 Piece Mega Halloween Toy Novelty Assortment; 12 Halloween Ducks, 12 Halloween Pencils, 12 Halloween Sticker Sheets; 48 Halloween Erasers; 72 Halloween Glitter Tattoos!!

7.  Don’t leave home without it:  Auto-injectors need to go everywhere with you – including trick-or-treating.  You know they’ll be carrying a bag!  Make sure that your child’s epinephrine auto-injector is in there with a flashlight.

 

8.  Allergy Shmallergy’s list of safe candy:  Sharing a holiday builds community.  Refer your friends and neighbors to Allergy Shmallergy’s list of nut-free candy to truly create an inclusive Halloween that EVERYONE can enjoy!

 

 

(Thank you in advance! A portion of the proceeds of the affiliate links go toward AllergyStrong.org – an organization aimed at helping at risk families with food allergies.)

 

Positive Parenting with Food Allergies September 29, 2017

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Last year, I had the pleasure of speaking with Lyndsay Edwards of Allergy Blog Awards UK.  In her podcast, she asked a lot of thought-provoking questions on the topic of parenting a child with food allergies.

 

Because of the challenges and risks associated with food allergic reactions, it is critical to raise food allergic children to be confident, resourceful, and self-advocating.  And all of that begins with a good attitude towards food.

 

Here is the transcript of Lyndsay’s well-crafted podcast [or listen here: Allergy Blog Awards UK – Allergy Shmallergy Living Positively with Food Allergies].

 


 

So, I know your son was diagnosed with a dairy allergy at 6 months old and other allergies by the time he was just 15 months old, can you just take us back to that time and what it was like for you getting the diagnosis?

 

Despite his eczema, acid reflux and asthma (conditions that I now understand to be related to food allergies), I was in denial.  Even though I followed her instructions to the letter, I scoffed at our pediatrician’s recommendation to avoid feeding my son a whole host of allergens as we introduced first foods.  “He’s probably not allergic to any of these!” I remember saying.

 

When she called us to discuss the results of my son’s blood test, revealing that he was allergic to eight different foods in addition to environmental allergens, I was completely overwhelmed.  I couldn’t stop wondering:

 

What does this mean Not only the test results, but also in a bigger sense:  what does this mean for his life?  Will he have a normal life?  And more importantly, what can I feed him for dinner tonight?!!

 

I found myself grieving for the hopes and dreams I had imagined for my child (like baking cookies and spontaneous trips to get ice cream), but then my husband snapped me out of it.  He reminded me that we would find work arounds.  And, if they didn’t exist, we’d create them!  Very quickly, THAT became my focus.

 

 

How do you cater for your son at home?  Do you all eat the same?

 

Because my son was allergic to so many foods, I had to learn how to cook (and fast!).  Unbelievably, he’s my most adventurous eater.  He loves everything seafood (no matter how crazy the dish), sushi…  and he’s consistently adding requests to his list.

 

These requests inspire me to learn how to cook all kinds of intimidating international cuisine.  No one who knows me would have EVER guessed that I regularly cook Chinese food or Persian or make all kinds of sushi.  In high school, I once burnt soup!  SOUP!

 

When he was a toddler (and an only child), I was making separate meals for my son.  But being a short order cook isn’t my strong suit and I didn’t want my son to feel like I was treating him differently because of his allergies.  In his own home, he should feel safe and included.  As I got better at reading recipes, swapping out his allergens for substitutes, I started serving only one meal (what a relief!).  I also began finding meals with optional parts (like tacos that you could stuff with cheese or not and make-your-own pizza night).  I now have quite a collection of tried and true recipes that are free of peanuts, tree nuts, sesame seeds, dairy and in many cases egg (an allergy my son has since outgrown).

 

 

When did you start your blog and what inspired you to do so?

 

It was very important to us to raise a confident child who felt capable in the world.  Food allergies are very stressful.  I wanted to share simple solutions with other parents and put out useful information so that families can remain calm and make informed decisions.

 

 

One of the things that really stood out for me on your blog is how you focus on teaching your son about his food allergies in such a positive way so that he doesn’t feel left out or sad, can you just explain how you do that and what has worked for you and your son?

 

We have repeated the message that everybody deals with something – sometimes that “something” is invisible to the eye, like food allergies.

 

We try to downplay the importance and emphasis on food.  For example, we try to reward achievements with activities rather than treats.

 

And, we remind all of my kids that the best party of any party is always the company, hardly ever the cake.

 

Involve your kids in problem solving.  We can’t control the fact that my son has food allergies, but I can give some control OVER them by getting his input on overcoming obstacles.

 

Prepare, prepare, prepare to provide special treats in anticipation of special events.  Bring a gluten-free cupcake to the party; pack a sesame-free hamburger bun for the barbeque; carry a little dairy-free butter out to dinner.  Create positive experiences around food and demonstrate how easy it is to overcome challenges.

 

Let him vent!  We’ve taught my son the names for his feelings and encouraged him to talk about them.  First, children need to know the language to use to express their emotions.  Then they can engage in an open dialogue to release stress and give parents an insight into how they are experiencing the world.

 

 

Ok, before I get to my last question, can you tell everyone where they can find you on social media, your website, etc?

 

Yes, of course!

[You all know where Allergy Shmallergy is! shmallergy.wordpress.com]

Twitter: @shmallergy

Facebook:  Allergy Shmallergy

Instagram: shmallergy

 

 

And my final question is if you could give allergy parents one tip, what would it be and why?

 

Help prepare your child to negotiate the real world: practice asking questions, allow them to speak to a waiter, in short: EMPOWER them!  Give them the tools to tackle the world!

 

And, provide a safe place for them to come home to. A safe home environment (free of allergens) as well as a safe space psychologically where they can relay their triumphs and articulate their frustrations without judgment or anxiety and find support.

 

That’s two tips (sorry!), but I hope they’re both helpful!

 

Ask Me Anything! September 19, 2017

Filed under: Parent Sanity — malawer @ 11:33 am
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My older child has food allergies.  Now, I’m afraid to introduce his allergens to his younger sibling.  I know I need to, but how can I do it safely?

 

Great question!  And, many of us can relate to your concerns.

 

What is the real risk?

Here’s something encouraging to keep in mind:  Most siblings of kids with food allergies do not develop food allergies themselves.  Studies by lead author Dr. Richi Gupta (2015) showed that siblings only have a minimally higher chance of having food allergies.  And, researchers warned against having siblings allergy tested before introducing food because it increases the odds of false positives, resulting in avoiding foods unnecessarily.

Bottom Line:  Most siblings have no greater risk of having food allergies than any other kid without a food allergic sibling.  That offers a little relief!

 

New Feeding Guidelines:

In January 2017, the experts at the National Institute of Allergy and Infectious Diseases (NIAID) recommended feeding infants appropriate eggs, fish, dairy, peanut-containing foods (not whole peanuts for fear of choking), or other highly allergenic foods between 4 and 6 months after speaking with your pediatrician.  Contrary to advice many of us were given with our first child, research now shows that delaying introduction may actually increase your baby’s risk of developing food allergies.

 

[Please read: Understanding the New Peanut Allergy Prevention Guidelines for more information and a list of peanut-containing foods.]

 

Bottom Line: You’re actually HELPING your baby by introducing highly allergenic food on time by reducing his/her risk of developing food allergies.  Now’s the time to overcome your fear!

 

What’s the best way to introduce your baby to a food your older child is allergic to? 

After your pediatrician okays introduction and your baby consistently tolerates solid food, plan to introduce one food at a time waiting 3-5 days in between new foods.

  • For the first introduction, buy the new food in single serving size if possible.  This limits accidental exposure and cross contamination risk.  Be sure to store extras, if any, somewhere out of reach of your older child.
  • It might be easiest to introduce a new food when you are alone with your child, so that you can carefully serve the first food, clean up, and observe for reactions.
  • Consider taking your baby on a picnic or outing close to home to minimize your concern about crumbs in the house.
  • Bring your cellphone with you in the unlikely case of a reaction.
  • Remember, that dishwashers are an effective way (but not the only way!) to wash away allergens.  And, hand sanitizers do not get rid of food protein.  Wash hands with soap and water after handling your older child’s allergen.
  • Feed your baby the new food then wait 10  minutes, looking for signs of negative reaction: hives, swelling, behavioral changes or trouble breathing.  If no reaction occurs, continue feeding and monitor for about 2 hours.

When my younger two children were ready to try peanut-containing food, I bought snack size peanut butter cracker sandwiches.  I took each child separately to the local park and had a picnic.  We brought lots of wipes to clean hands and mouth before returning home without a reaction!  It was a special (and productive) day for us both.

 

How Do I Keep Allergenic Food Safely in the House?

Once you’ve established that your baby isn’t allergic to each new food, you may wish to continue keeping it on hand in your home.  Often it is necessary for him or her nutritionally to continue eating allergenic foods like milk, eggs, wheat, etc.  But, it’s important to store the foods your older child is allergic to safely so that your older child avoids accidental ingestion and reaction.

 

If you haven’t already done so, consider implementing a system to label the safe foods in your kitchen  Please read, Food Labels to see the simple system we use here at my house.

 

Think of what a relief it will be once you know your baby can tolerate each new food.  You can do this!  Good luck!

 

 

The Language of a Food Allergic Reaction September 11, 2017

A food allergic reaction can vary from mild to severe and typically takes place shortly after eating or exposure.  All reactions require immediate attention.  But with severe allergic reactions, called anaphylaxis, minutes matter.

 

As kids head back to school and begin new activities, it’s important for EVERYONE to become familiar with the symptoms of anaphylaxis and what it language a young child might use to describe it.

 

Symptoms of Severe reaction

Some of the symptoms of a severe reaction are obvious: hives, vomiting, coughing.  But for others, we need to rely on verbal clues.  Young children may describe an allergic reaction a little differently than adults would.

 

Language of Food Allergic Reaction

 

Should you suspect that your child, or one in your care, is experiencing anaphylaxis, act immediately:

  1. Administer epinephrine, holding pen for 5-10 seconds in meaty part of outer thigh.
  2. Call 911.
  3. Contact parents.

 

Minutes matter when it comes to treating anaphylaxis.  Knowing the symptoms and the different ways it might be described will help you save a life.