Allergy Shmallergy

Simplifying life for families with food allergies.

Carrying Epinephrine: Stunning Stats and Easy Solutions October 16, 2018

Filed under: Preparedness,teens — malawer @ 9:00 am
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We all know that the best treatment for anaphylaxis, a severe life-threatening allergic reaction, is an immediate dose of epinephrine.  So, why then do patients not carry it?

 

Some patients do not have access to epinephrine.  Although the drug epinephrine itself is not expensive, the devices used to administer it can be very costly.  Sometimes prohibitively so.  Many are working to reduce the price families must pay at the pharmacy.  The makers of Auvi-Q, for example, are offering their product for free to those with commercial insurance (including those with high deductibles and for whom it is not covered) in an effort to get epinephrine in the hands of patients who need it [read more here].  A generic EpiPen has just been approved by the FDA to be introduced in the coming year.

 

Teens are a group known for their non-compliance in carrying epinephrine.  Teenagers, wired to take risks and extra concerned about fitting in with peers, are often found without epinephrine when they critically need it.  In an effort to be like everyone else,  they some times purposely leave their auto-injectors when socializing with friends.  Adolescents will also mentally minimize the perils of leaving their auto-injectors at home and/or not reading ingredient labels while basking in the potential benefits of acting and operating like their friends and not drawing attention to themselves – a dangerous combination.

 

An Alarming Study

 

Dr. Dave Stukus and his colleagues from Nationwide Children’s Hospital conducted a study  four years ago of patients and their caregivers being seen by an allergist at their clinic.  Among their patients at high risk, only 40% carried auto-injectors even though 60% knew that epinephrine should be carried with them at all times.  Nearly 50% of patients carried expired devices and of the 60% diagnosed with asthma (which could make an anaphylactic reaction even more serious) only 38% carried had epinephrine with them at their clinic visit.

 

But Adults Surely Know Better…

 

Nope.

 

Adults with food allergies fared no better.  A survey was conducted earlier this year (March – June 2018) of 597 people representing themselves and their children (a total of 917 patients).   While the majority of those questioned filled their prescriptions for epinephrine, almost half (45%) didn’t have their auto-injectors with them at the time of their most severe reaction.  Shockingly, 21% didn’t know how to use their epinephrine auto-injectors (EAIs).

 

#AlwaysCarryTwo

 

In the same 2018 study, fewer than 25% of patients or caregivers routinely carried multiple auto-injectors despite the advice that all patients carry at least two self-administering epinephrine auto-injectors.  Carrying two EAIs is critical in case one fails or a second dose is needed before emergency services arrives.

 

To Sum It Up

 

According to Dr. Stukus, there are several reasons for not carrying epinephrine:

  • inconvenience
  • cost
  • forgetfulness
  • complacency if a long time has passed between reactions
  • expiration of previous EAIs
  • lack of understanding that patients should carry two EAIs at all times

and, I would add

  • denial of severity of conditions and the reality of a reaction

 

Solutions

 

First, all patients need access to epinephrine.  Financial assistance is available!  If you need help affording an auto-injector, please consider savings programs offered by the various pharmaceutical companies.  The non-profit Kids with Food Allergies has an excellent article to help make EAIs more affordable,  What to Do if You Can’t Afford Epinephrine Auto Injectors.

 

Second, education about the difficulties and dangers of managing a severe allergic reaction without epinephrine is needed.  This begins in the doctor’s office.  Physicians should ask about how and how often patients carry their auto-injectors and discuss best practices to make carrying two EAIs a habit.  In between visits, patients can learn how to properly use an epinephrine auto-injector and why there’s no need to be afraid of using it.

 

Smart placement of epinephrine will help you remember to take it with you.  It is important to note that you cannot store auto-injectors in your car (temperature fluctuations can affect whether the device will fire properly and how well the medication will work once injected).  Instead, consider leaving it on a hook by the door you exit out of, next to your phone or keys, or set a reminder on your phone to alert you 10 minutes before you’re due to leave the house.

 

There are always many ways to carry epinephrine.  A purse makes it easy.  But a drawstring cinch bag, gym bag or a backpack will work for men.  Some auto-injectors fit right into a pant pocket!  There are specialty products that help you carry your auto-injectors in inventive ways, such as running belts, wristlets, arm bands, leg holsters, clip-on bags, etc.

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Lastly, make it a habit.  You know that feeling when you forget your phone?  Or your lunch?  With regular practice, remembering your epinephrine will become second nature.

 

As Dr. Stukus sagely points out, emergencies are never planned.  They are not predicted.  Epinephrine auto-injectors are meant to be kept in arm’s reach.  Carrying your epinephrine is certainly a lot less hassle than going to the emergency room for the night.

 

#MinutesMatter: Be Prepared for Severe Allergic Reactions March 2, 2018

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I hope that no one finds themselves in the situation of experiencing a severe allergic reaction.  But it pays to be prepared.  Studies have shown that delayed use of epinephrine is the leading cause of negative outcomes during anaphylaxis.  That’s why #MinutesMatter in the event of an emergency.

 

What can you do to prepare for an unexpected allergic reaction?

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1. Have a current Emergency Action Plan (EAP) and review it.  Emergency Action Plans are forms filled out by your doctor or allergist which outline actions to take in the event of an allergic reaction.  They are arranged into If/Then actions based on symptoms making it easy to determine what you should do. And, EAPs should always note the presence of asthma in a patient, as asthma can complicate a reaction.  To learn more, please read Allergy Shmallergy’s Emergency Action Plan or obtain a copy like the one created by the American Academy of Pediatrics.

2.  Lay patient down.  If the patient is vomiting, lay them on their side. Elevate the legs if possible.  This position helps with blood flow.

3.  Administer epinephrine.  The sooner, the better.  Should you need to administer epinephrine, do not wait.  Early administration of epinephrine is associated with the most positive results, including less medication needed at the hospital.

4.  In the case of severe allergic reaction (anaphylaxis) first administer epinephrine, then call 911.  You will need to go directly to a hospital after experiencing anaphylaxis even if symptoms subside.  This is because patients require additional monitoring and because secondary reactions can occur – even hours after contact with a suspected allergen.

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Other keys to success:

Always carry two epinephrine auto-injectors with you wherever you go. Most allergic reactions occur between seconds to 60 minutes after coming into contact with an allergen.  However, in rare cases, allergic reactions can be delayed.  Epinephrine is the only medication that will stop an anaphylactic reaction.  

Train your tween, teen and friends about the symptoms of anaphylaxis, how and when to use an epinephrine auto-injector.  Make sure they understand that there’s no major downside to using an epinephrine auto-injector.  Remind them to inject first, then call 911.

Carry Benadryl liquid or Zyrtec syrup for minor allergic reactions.  In the case of anaphylaxis, patients will still need epinephrine to stop this type of severe allergic reaction.  However, if someone is experiencing minor reactions (for example: hives, itchy mouth) products containing active ingredient Diphenhydramine will help make things more comfortable.

 

 

Most importantly, follow this Emergency Room mantra:  If you THINK you need to use epinephrine, you DO need to use it.  

 

In a severe allergic reaction #MinutesMatter.

 

 

 

 

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.

 

 

Prep Your Meds for School: Refill Options July 28, 2017

Time to get your emergency medications ready for school.  Don’t worry:  there’s still lots of summer fun to be had!  But to maximize summer fun over back-to-school frenzy, there are a few things you can do.

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  1. Check the Date:  Check the expiration dates on your epinephrine auto-injectors.  If they are due to expire between now and December, it may be a good time to consider refilling your prescription.
  2. Know Your Options:
    • There are several choices of epinephrine auto-injectors these days and they all efficiently deliver the same life-saving drug (epinephrine) in different ways.  I’ll outline those different auto-injectors below.
    • Talk to your doctor and consider your lifestyle when choosing your auto-injector.
    • Be sure you, your school nurse, caretaker, and child are all familiar with how to operate the auto-injector(s) you choose to stock at home, school and elsewhere.
  3. Update Your Emergency Action Plan:  Your doctor may have provided you with one or you can take Allergy Shmallergy’s Emergency Action Plan to your doctor on your next appointment.  Make a copy for home, your car, on-the-go, and school.
  4. Ask Directly:  You may need to ask your doctor specifically for the auto-injector you wish to use.  Some doctors prescribe only one without discussion, but are certainly willing to write a prescription for the auto-injector that works best for you.

 

What ARE the options for epinephrine auto-injector:

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Auvi-Q:

Yes, it’s back on the market and better than ever.  Auvi-Q delivers epinephrine via a compact package that speaks to you.  You heard that right: it talks you through an injection, even counting down the length of time you are supposed to hold the device in place.  Plus, the needle automatically retracts, reducing the possibility of post-injection injury.  Each Auvi-Q is about the size of a deck of playing cards, easy to carry for everyone (especially teens, young adults and fathers – who can fit them in their pockets).

 

*Auvi-Q automatically ships and delivers their auto-injectors directly to you.  Initiate this process with your doctor.  To read more about their direct delivery service as well as their cost-coverage programs, refer to the Affordability program page.

 

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Adrenaclick:

Adrenaclick has a slimmer profile than the well-know EpiPen, but is about the same length. Adrenaclick is a no frills epinephrine auto-injector, often used as a generic for EpiPen.  In fact, responding to the rising costs of brand name epinephrine auto-injectors, CVS pharmacies (among others) replaced its stock of auto-injectors with Adrenaclick. In their words, “Patients can now purchase the authorized generic for Adrenaclick®… This authorized generic is a Food and Drug Administration (FDA)-approved device with the same active ingredient as other epinephrine auto-injector devices.”

 

*IMPORTANT, Adrenaclick operates differently than EpiPens and they DO NOT come with a trainer.  If you choose to use this useful auto-injector, be sure to also place an order for an Andrenaclick trainer.  And, do your research for best pricing locally.

 

EpiPen:

EpiPens are the most widely used and most familiar of the epinephrine auto-injectors.  In fact, its familiarity is what keeps many customers coming back.  School nurses and even non-allergic individuals may be more accustomed to its look and how to use it.  In addition, EpiPens are substantial – making them easy to find in a backpack or purse.  In 2016 Mylan, the manufacturers of EpiPen, released a generic of its own product in response to public pressure over its pricing.  Both products contain the same medication and use the same or similar injector mechanisms.  EpiPen’s price has not been reduced in any way and is the most expensive auto-injector on the market.  The generic version is less expensive, but still a price worth considering for many.

*Mylan does offer coupons which can be found on their website.

 

IMPORTANT: EpiPen Recall April 1, 2017

IMG_3211Expanding on its recall in other countries, Mylan is now recalling EpiPens in the United States.

 

The recall began when reports of two devices outside of the U.S. failed to activate due to a potential defect in a supplier component.

 

According to Mylan, “The potential defect could make the device difficult to activate in an emergency (failure to activate or increased force needed to activate) and have significant health consequences for a patient experiencing a life-threatening allergic reaction (anaphylaxis). ”

 

As a precaution, Mylan is recalling EpiPens made my their manufacturer, Meridian Medical Technologies, between December 2015 and July 2016.  This recall applies to both their EpiPen Jr. dose (0.15mg) and their regular dose (0.3mg).   The recall does NOT affect generic EpiPens introduced in December 2016.

 

Please see below for lot numbers and expiration dates.  Remember to check any EpiPen sets you may have including those outside of your home (for example, at school, daycare or a relative’s house).  Mylan said that recalled EpiPens will be replaced at no cost to the consumer.

 

For more information as well as product replacement information, please visit Mylan’s site directly.

 

Mylan EpiPen recall April 2017*Please share widely with friends and family as well as school administrators and nurses.*

 

UPDATE:

If your EpiPens are affected by the recall:

  1.  Contact Stericycle to obtain a voucher code for a free, new replacement EpiPen.  Stericycle: 877-650-3494.  Stericycle will send you a pre-paid return package to ship back your recalled EpiPens.
  2. Bring your voucher information to your local pharmacy to receive your free replacement EpiPens.
  3. Send your recalled EpiPens back to Stericycle using their packaging.  Remember: DO NOT send back your recalled EpiPens until you have replacements in hand.

 

Mylan continues to update its recall page with their latest information at mylan.com/epipenrecall.

 

The Fire Drill – 5 Key Lessons from an Intensely Scary Night February 22, 2017

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I had been home from the restaurant only ten minutes with my preschooler almost tucked into bed when I got the call.

 

“Miles isn’t feeling well. He’s nauseous and is having terrible asthma. We’re heading home early,“ my husband informed me calmly. My husband and two sons left our regular sushi dinner to attend a tennis lesson, still chewing as they walked out the door.

 

My oldest son has suffered from asthma since he was 10 months old, but this just didn’t sound like the typical onset of asthma for him. Something about Eric’s voice suggested something “other.” “Do you think it could be a food allergy reaction?” I asked.

 

“I don’t know; but we’re getting home as quickly as possible.”

 

Completely abandoning my daughter in her bed, I walked to our emergency medication and unsheathed the freshest EpiPen. I was reviewing our emergency action plan as headlights tore into the driveway.

 

Calm but focused, I greeted my son at the door. He was red and hot and choking out words as I tried to check in with him about his symptoms. He could barely speak. He felt nauseous and clutched his stomach as he made his way into the bathroom, afraid he would throw up. His description of his symptoms came out in – sometimes inaudible – spurts. He was fighting for breath. He felt and looked worse than I had ever seen him.

 

While my hand calmly rubbed his back and my eyes scanned his face assessing the situation, a million thoughts raced through me in a nanosecond. Was it something he ate? Was he possibly reacting to a new allergen? Was this anaphylaxis or pure asthma…or both? The flu and other upper respiratory viruses were spreading so rampantly that nearly a third of my son’s class was out that week. And, he had mentioned having a headache and feeling a little nauseous after school – something that had seemingly subsided by dinner.

 

No matter how I weighed my options, a few small words reverberated in my brain: two systems. Most emergency action plans state that if two or more essential systems (gut/stomach, lungs, skin, heart) are affected in an allergic reaction, epinephrine should be administered immediately. I held up the auto-injectors behind my son’s back, signaling to my husband that we might need to use them. Neither of us have had to use an auto-injector on my son before (knock on everything wooden). We knew it was probably the right call now. We were both looking for the other to validate that decision.

 

As with all things, I wanted the use of the auto-injector to be the absolute right decision. I called my father-in-law, a doctor of more than 40 years, for one last vote on how to proceed. It was a brief conversation. “Get him breathing! Give him albuterol, I’m coming right over.”

 

Having caught sight of me waving the EpiPen in the air to my husband, my son had now begun to sweat with panic – making everything much worse. I sat him on the couch and tried to cool him off for just a moment – considering the facts again. Asthma. Nausea. No throat, mouth, or tongue swelling. No hives. No clear relationship between this reaction and food – but always a real possibility.

 

I looked at my sweet boy once again, suffering for breath, and noticed his pallor wasn’t quite as red any longer; it was now tingeing blue. I grabbed the epinephrine and pulled off the safety cap. At that very moment, my brother-in-law (another doctor) and father-in-law walked through the door. With stethoscope in hand and exuding a calm and caring in doses that make me tear up in appreciation even now, they examined my son and set him up on a nebulizer – a machine that delivers asthma and other respiratory medications as a penetrating, breathable mist.

 

We monitored Miles’ pulse (which was steady) and his breathing (which was labored and difficult). It took a lot of medication and effort, but Miles began processing air more efficiently. I didn’t realize until the second hour of treatment that I had been clutching his auto-injector the entire time.

 

As Miles’ color returned and the dust began to settle, he began to recall details about his day – clues that might have been helpful earlier. Like, the fact that he experienced asthma during recess at school. As he continued to improve, we noted that he was simultaneously experiencing a migraine, which can bring about nausea. Together, we determined that this was likely an acute asthma attack and not a result of his food allergies.

 

All four adults watched Miles for another several hours (well into the night) before anyone was willing to even entertain sleep. And, by then, sleep didn’t come so easily. I awoke in a gasping sweat several times that night and slipped into my son’s room to check on him. At around 5:45 am, I placed my hand on his back and he broke the quiet of the pre-dawn, humorously stating, “Mommy. Your hand is like a furnace!” Smiling and with great relief, I knew the sun would come up that morning and all would be well.

When I relayed these events to my own father, he captured it perfectly. “You had a fire drill last night.” We certainly did. And, as with any good training exercise (intentional or not), we learned some valuable lessons that night.

 

  1. Trust your instincts. I knew we needed to use epinephrine. Had there not been two doctors in the family within arms’ distance from me, I would have absolutely used it. And, so would my husband. Even though it was not anaphylaxis and everything turned out well, I STILL regret not having used the auto-injector sooner. I had my doubts about a food allergy reaction for a number of reasons. The afternoon nausea as well as the absence of hives and swelling gave me pause – which is why I called my father-in-law. But, did being right about his diagnosis make me feel better about my hesitation? No. Severe food allergic reactions can present themselves with a number of symptoms and they can escalate very quickly.

 

  1. Always, ALWAYS carry your epinephrine auto-injector with you. EVERY TIME. And, make sure that your friends, family and/or whoever is caring for your child knows how to use it (procedures are slightly different for Auvi-Q, the Adrenaclick and the EpiPen, so I recommend reviewing often). In our case, we accidentally forgot to transfer the auto-injectors from my purse to my husband’s bag, taking for granted that he’d no longer be around food; out only for an hour to play tennis. Thankfully, we live two minutes from the tennis courts. But had they been further, my husband would ABSOLUTELY have needed those auto-injectors.

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  1. As if you needed an extra reason to carry your auto-injectors: Those who have asthma are more likely to suffer from severe food allergic reactions– particularly if that asthma is not well-controlled. Asthma can complicate food allergies. Asthma occurs when there is narrowing of the airways, making it difficult for an individual to take in the proper amount of air. In my son’s case, his lungs were taking in so little air that initially my father-in-law couldn’t hear any movement with his stethoscope. No wonder he was turning blue. In an emergency situation, epinephrine can be used to treat a severe asthma attack. We were milliseconds from using it.

 

  1. If you use an epinephrine auto-injector you must go the nearest emergency room immediately. This is not because you gave the injection. Rather, those having severe food allergic reactions need additional medication and treatment. Furthermore, patients can suffer something call a bi-phasic reaction – that is, a second, delayed bout of anaphylaxis. It is estimated that up to 20% of patients suffer such a reaction.

 

  1. Once Miles went to sleep, we recapped the night with my father-in-law, who’s served in some fast-paced emergency rooms. I’ve been repeating something he said that night to everyone who will listen:

“We used to tell surgical residents,” he began, “‘If you’re considering performing a tracheotomy, then you need to do a tracheotomy.’”  The same holds true for anaphylaxis. If you think you might need to use an auto-injector, then you DO need to use one. If you’re considering it, then the time is now.

 

I’m beyond grateful that our story ends happily.  I pray you all never have to experience the intensity of a severe reaction (whether that be from food allergies or acute asthma).  But I hope that by sharing our experience and the lessons we learned, your story will end happily, too.

 


 

Essential Resource:

I can’t recommend enough this informative piece on when to give what medication during a severe allergic reaction. The information contained in this article echoed in my head during the above incident.

 

From the Food Allergy Treatment Talk blog:

Putting the Fire by Dr. Brian Schroer

 

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

Oh, happy day!

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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.