Allergy Shmallergy

Simplifying life for families with food allergies.

The Dangers of a Dairy Allergy November 17, 2017

cereal and milk pixabay StockSnap

 

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.

 

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.

 

 

 

Your Growing Child: How to Carry Epinephrine August 11, 2015

Filed under: Preparedness,Uncategorized — malawer @ 10:00 am
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As a parent of a food allergic child, you are the person responsible for carrying your son/daughter’s epinephrine and other rescue medication.  As your child ages, however, he will not only go on play dates or attend sports practices and games without you, but she’ll want to go the movies with her friends or walk around the school fair.

My son, who is now 10, has shown a definite preference to carry his own epinephrine in certain situations.  If he’ll be indoors (or it’s cool out), he’ll stick it in his sporty cinch backpack alongside an inhaler and whatever else he brings along that day.  If it’s hot out, we throw the meds in an insulated lunchbox alongside an ice pack or a bottle of ice water and place that inside a cinch bag.

As he grows he may wish to try a few alternatives to remain prepared.  If you’re an adult or teenager with allergies, there are a few convenient ways to wear (yes, wear) epinephrine below.  In fact, I plan to get a few for MYSELF to help him carry his rescue meds while we’re active or on-the-go.

Keeping your or your kids’ rescue meds with them should be easy – no matter which autoinjector you prefer.  Below are some pretty cool and easy ways to carry epinephrine no matter where you go or what you do.  *Just remember, epinephrine needs to be kept at room temperature or below to keep from compromising its potency – see EpiPens in Sun or Snow for further details.*

Auvi-Q Epinephrine Auto-injector Case (Red)

Auvi-Q Autoinjector Case by Rescue Shot Case

  • LegBuddy by OmaxCare

  • Gourmet Getaway Mini Snack Tote

    BuiltNY’s Gourmet Getaway Insulated Lunch Sack

AimTrend All-Purpose Pocket Cinch Drawstring Gym Bag, Lime/Smoke

AimTrend’s Cinch Backpack Gym Bag

Skecher’s Sequin Backpack

 

Food Allergy Awareness Week: What You Can Do to Educate Others May 13, 2015

Filed under: Preparedness — malawer @ 8:00 pm
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FAAW.jpg

Happy Wednesday, everyone!  Check out my latest post over at ContentChecked for simple, easy things you can do to participate in Food Allergy Awareness Week/Month!

What YOU Can Do to Education Others

Excerpt:

Parents of children with food allergies live with certain challenges day in and day out.  We read labels, ask questions, and are prepared for any emergency.  And although we are adept at handling food-related obstacles, that doesn’t mean that the greater community is intentionally setting them up.  In fact, in my experience, most people are well meaning but simply don’t know enough about food allergies.  They want to be helpful, but don’t know how…. read more

 

Auvi-Q vs. EpiPen: Which Is Best For You? October 4, 2013

Filed under: Preparedness — malawer @ 9:12 am
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As most of you are aware, there are many different types of epinephrine auto-injectors available these days.  Up until recently, EpiPens ruled the marketplace.  But recently, a new product, Auvi-Q, has been getting a lot of buzz.

 

So, if you’re asked which one you’d like to be prescribed, as I recently was by our allergist, which will you choose?

 

Here are the pros and cons to both as I see it:

  

EpiPens:

  • Because they dominated the market for so long, EpiPens are recognizable.  In an emergency, that might mean someone who does not have food allergies may know to look for one and may be familiar with what to do with it.
  • They are larger (especially because you’re carrying two of them), ensuring that they are easy to find in a purse or sports bag when seconds count.
  • EpiPens have been in use for a long time, making them tried and tested.
  • Because they are large, EpiPens are hard for men to carry.
  • In a panic, you have to either remember your injection instructions or read them on the outside of the pen itself – something that someone who is frazzled may have trouble concentrating on.
 

Auvi-Q:

  • There’s no doubt about it, Auvi-Q is sleek and small.  This is likely appealing to teenagers who may be tempted to leave their epinephrine at home.
  • It instructs you!  So, even if you’ve never touched an auto-injector before, chances are you could properly administer epinephrine using the Auvi-Q.
  • It fits in your pocket.  I think this will be very helpful to both adolescents and men.  Women carry bags, so no matter the size of the auto-injector, it likely fits.  But men… well, the “Murse” doesn’t look like it’s really catching on.  Dads can stick the Auvi-Q in their pocket while they’re out on the town with the kids.  My own husband is planning to leave it in his pocket when he coaches my son’s baseball team this weekend.
  • The Auvi-Q is about the size of a cell phone.  Again, this makes it convenient for a pocket, but less so for locating it in a large purse.
 

So, what do I decide to do?  Well, I chose both!  I want my babysitters and other visitors to my house to have the emergency instinct to go for what they know:  the EpiPens.  But, I love the convenience of carrying the Auvi-Q for my husband, in particular, ensuring that my son’s emergency meds are always on-hand.

 

Both Auvi-Q and EpiPens have a solid place in the marketplace.  Both administer epinephrine which saves lives!

 

Which one did you choose?

 

That’s What Friends Are For September 9, 2013

Filed under: Preparedness,School — malawer @ 9:00 am
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I count my lucky stars for the amazing and supportive friends I’ve made throughout my life.  It’s something I try never to take for granted.  Friendship, as you know, is essential to well-being.  And in my son’s case, it might be critical to it.

 

Some of his oldest and best supporters were featured alongside him in the Discovery Channel documentary over the weekend. They are constantly making sure their parents have safe snacks for my son during play dates; they are patient and kind when we collectively can’t eat dessert from a particularly enticing menu during family dinners; and they ensure that he feels included when, for example, team snacks aren’t allergy-friendly.

 

Over the summer, the father of one of his best buddies told me something that almost made me cry with gratitude.  The friend’s parents had spoken to their son about food allergies.  And, as they educated him about food allergies in general and my son’s allergies in particular, they also practiced what he should do in a food allergic emergency.

 

They taught him the signs of an allergic reaction:

  • Hives or itching;
  • Coughing, wheezing, trouble breathing;
  • Complaints of an itchy or swollen throat/tongue;
  • Upset stomach;
  • And/or if my son just doesn’t look right after eating something.
 

They also gave him a plan of action:

  • Tell an adult (preferably my husband or me, but his parents or any other supervising adult would do); and
  • Call 911.
 

My heart swelled.  I hadn’t asked them to do this.  I hadn’t asked them to have their son safeguard mine.  But that’s what friends do, don’t they:  they look out for one another.  This responsible little guy is now another educated eye on my son when I’m not immediately there — which may be more and more as he grows up.  And that gives me some peace of mind.

 

Following this conversation, my son and his friend were at dinner with us.  After the bread was delivered to the table, his friend quietly got up from his seat next to my son, walked to the other side of the table and spoke with his father.  As it turned out, he was trying to decide whether he should move seats or forego the bread which was sprinkled with sesame seeds in order to protect my child.  I had (and still have even as I type this) goosebumps at the understanding and thoughtfulness of this fabulous 8 year old.

 

If you watched “Emerging Epidemic”  you may have noticed how friends and relatives play a crucial role to food allergic children.  The most explicit example came about 20 minutes into the program when Andrew’s story unfolds.  Among the many things we learn about Andrew is that he is surrounded by friends who understand his food allergies.  They are knowledgable about what to do in case of a reaction and are there to help him.

 

I’ve said it many times, but educating young people about food allergies in general increases social consciousness about this widespread issue.  It not only instills empathy for their food allergic peers whose experiences are different from their own, but it helps them rehearse what to do in case of an emergency when precious seconds count.   With two kids in every classroom with food allergies, this kind of education could save lives.