New Epinephrine Study Shows Alarming Results

A Disappointing Reality: Many Families of Food-Allergic Kids Are Not Carrying Epinephrine

by David Stukus, MD

It is a well-known fact that epinephrine is the best treatment for anaphylactic reactions. Patients or their adult caregivers are urged to always keep their epinephrine auto-injectors close at hand. Epinephrine should be given as early as possible after a reaction begins.

Unfortunately, many food-allergic children do not have immediate access to this life-saving medication. There has been much focus on making sure that epinephrine is available at school and in places where kids are away from their families. But, it appears that epinephrine may not always be available when kids are with their families, either.

An Alarming Study
My co-workers and I recently conducted a survey at Nationwide Children’s Hospital’s allergy clinic. We asked families of kids with food allergies who saw an allergist at the clinic whether they had their self-injectable epinephrine with them at the time. To a large degree the answer was “no” – even among those at the highest risk of severe reactions.

Although this preliminary study only involved 35 families, the results were so alarming that they could not be ignored:

  • Most not carrying – 60% said that epinephrine should be carried at all times, but only 40% had it with them at the clinic.
  • Expired devices – Of those who did have self-injectable epinephrine with them, nearly 50% were carrying devices that had expired.
  • High-risk patients – Of those with the highest risk factors for a severe reaction:
    • 20% had experienced a prior allergic reaction to food that required treatment with self-administered epinephrine; only 29% of these patients had epinephrine with them at the clinic.
    • 90% had been diagnosed with peanut allergy; only 43% of these patients had epinephrine with them at the clinic.
    • 60% had been diagnosed with asthma in addition to food allergy; only 38% had epinephrine with them at the clinic.


Why Aren’t People Carrying Epinephrine?
The most common reasons why patients say they do not carry their epinephrine auto-injectors with them at all times include:

  • Inconvenience
  • Forgetfulness
  • Cost
  • Availability at other places, such as the home, car or school
  • Expiration of the previous prescription
  • Complacency if there has been no accidental exposure in a long time
  • Did not understand that they were supposed to carry it at all times


What All This Means
Education, as always, is key! Physicians need to start routinely asking patients if they have their epinephrine with them. For example, they should ask  if they always take it to restaurants, parties, the park, etc. And everyone in the food allergy community needs to help get the word out that:

  • Financial assistance is available – All available epinephrine auto-injectors have discount programs. Learn What to Do If You Can’t Afford Epinephrine Auto-Injectors.



  • Prescription reminders are available – If you ask, most pharmacies will automatically reorder before your current devices expire. Check with the manufacturer of your auto-injector to see if they have an automatic expiration reminder program.
  • A variety of great carrying cases are available – A list of some of the options is available here.
  • There are many ways to remember your meds – I always recommend that patients keep their epinephrine auto-injectors out in the open, such as next to the car keys, book bag or purse. If you sock them away in a medicine cabinet or drawer, it’s easy to forget to grab them every time you leave the house.
  • Epinephrine should not be kept in the car – Cars can get very hot or very cold. These extreme temperatures can change the medication and make it ineffective. Beyond that, though, an auto-injector that is in the car is an auto-injector that is not within reach. In an emergency, you want to be able to use your auto-injector immediately – not a few minutes later after you get the device from the car.


Remember, emergencies are never planned! Epinephrine auto-injectors are meant to be kept within reach at all times. During an anaphylactic reaction, minutes – or even seconds – count.

jayden-wears-medicine-pouchJayden is allergic to peanuts and carries his epinephrine in a red pouch.


For more information and the original study, see Curtis C, Stukus D, Scherzer R. Epinephrine preparedness in pediatric patients with food allergy: an ideal time for change. Ann Allergy Asthma Immunol. 2014 Jun;112(6):560-2.

  

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Dr. Stukus is an Assistant Professor of Pediatrics in the Section of Allergy/Immunology at Nationwide Children's Hospital, in Columbus Ohio. In addition to his interest in caring for families with food allergies and other allergic conditions, he also serves as Co-Director of the Specialty Asthma Clinic. He previously completed his pediatric residency at Nationwide Children's Hospital and his fellowship in Allergy/Immunology at the Cleveland Clinic Foundation. Dr. Stukus is the co-chair of the Kids With Food Allergies Medical Advisory Team. He is married with two children.

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Hi Aboreem1969 - welcome to KFA! There is no absolute time line for outgrowing a food allergy (not reacting anymore). How has your son's allergy been monitored? Has he been tested periodically to see if the numbers are decreasing? Has he eaten anything with milk recently and still showing reactions?

Dear Dr.

my son has severe cow milk allergy and we live in Kuwait. Is this allergy supposed to disappear or the symptoms alleviate by age. He is now three years and half  and was diagnosed as milk allergy when he was 6 months old.

 

Wow Rose, thanks for sharing your story. My kids were both highly sensitive
to corn and derivatives when they were little. Both outgrew it by middle
school, but it was a real challenge to avoid and many just wouldn't believe
where corn hid and that the highly processed stuff could possibly be an
issue. Thankfully mine were not anaphylactic.

@ Wendy Mains-- I think I know why your child had to use his epi pen so many times in the ER/hospital. Hospitals are FILLED with corn-derived products. I am also corn-allergic. I found out the hard way, after a lifetime (I'm in my 50s!) of migraines, joint pains, spontaneous vomiting seemingly without a cause, I ended up at the big famous institution in Minnesota. The immunologist looked at the results of a basic saliva genetic test that I had purchased and had processed. He said I should avoid all grains without exception, PERIOD. Having an auto-immune disease, I had gone "gluten free" long before. I had seven negative Celiac tests already, but he said "so what?". So I gave up even so-called "safe grains" i.e. rice, corn etc, and was stunned at how so many of my "medical issues" vanished. What I hadn't counted on was the corn derivatives in my medications, they were the last to go and now I have everything compounded. Two months after giving up corn in every single form, I was at an Urgent Care and went into full-blown anaphalaxis. The cause? The Exam table PAPER! After that I started looking at why I got sicker in hospitals. Almost all hospital disposable items are corn-derived! Even the masks and hand sanitizer. Almost everything. During a minor surgery I went into anaphylaxis because they had hooked me up with Lactated Ringer's, which has DEXTROSE. Dextrose=corn. The lubricant in my EGD and colonoscopies? Corn glycerin. It is EVERYWHERE as I'm sure you know. But hospitals are FULL of corn everything, everywhere. I carry with me a COTTON face mask I found online to protect myself. My husband carries all of our corn-free medical supplies with us. Anything you can think of, we have. No Betadine,  please, I have my own IODINE. (Povidone has a corn component, when they used Betadine in a surgery they had to crack off the cast in our distant ER at 3am, my leg looked like it had been boiled, the skin was broken and bloody). Eye-drops? Corn-based preservative. I have only 2 antibiotics available to me, no others can be compounded in the US.

Boxes from amazon?Corn paste in the cardboard. Paper towels? Corn. Remodeled and we had to get special drywall. It NEVER ENDS.

One doctor laughed at me for saying I had an allergy to the non-gluten derivatives of corn. He gloved up and his glove brushed my cheek. When I went into anaphalaxis in front of him, I guess he changed his mind. But I don't go to ANY doctor who thinks non-protein parts of a grain cannot possibly dangerous. If they won't believe it's possible, they won't believe anything you say anyway. The allergist back at home who had tested me and said, "Test is negative, you're not allergic to corn." Furious, I decided to SHOW her. I asked her for a powdered exam glove. Husband took out my epi pen, and brushed the edge of the glove on my arm saying, "Just watch". It took 10 seconds for me to react. I guess since the magic 35% classic allergic proof had been absent she thought our story was not plausible. But seeing is believing with some of these MDs. Most allergists won't even consider that  microcrystalline cellulose can cause a reaction. But it can, and does as I'm sure you know. My own personal opinion is that corn allergies are becoming more prevalent due to GMO or hybridized corn. (My family were farmers....)

I'm shocked, but not surprised as I know several people who don't carry the epi pens with them for their kids. I don't understand what good the epi will do if its at home and you are out. I feel as if my DDs medication bag is an extension of her. Wherever she goes, it goes. When she was first diagnosed several years back, there were 2 occasions I left it home. I turned right around to get it. To me, that is her lifeline. NOTHING is more important!

 

I am equally as shocked with people whose kids have PN allergies and who don't read labels or who tell me they still feed their kids food even if it has Xcontam warning on it.

 

I take my childs allergy very seriously, I don't want to take any risks with her life. You never know where the allergen will turn up and Id rather be prepared.

 

 

I will certainly let him know. Thank you for using his photo... he was thrilled! 
Kimberly and Jayden
 
 
Originally Posted by Kids With Food Allergies:

AMommy, thank you for sharing Jayden with us and tell him that KFA says he's doing a great job taking care of himself and is setting a great example for other kids.  

 

Wendy and Campbell,

Thank you for sharing your stories with us. Sorry to hear about your children's reactions. What you have shared will help other parents!

 

AMommy, thank you for sharing Jayden with us and tell him that KFA says he's doing a great job taking care of himself and is setting a great example for other kids.  

My son, wearing his EpiPen pouch above, carries his Epi everywhere, every time. He just turned 8 y/o and hasn't had a reaction in years... at least 5 years. His first was at almost 14 months old... Daddy gave him a Ritz Bitz PB Sandwich Cracker and he reacted... at the ER, they told us he is probably allergic to peanuts and to make that appointment with the allergist. We did and at 14 months old, he was diagnosed with an anaphylatic peanut allergy. Even though I used to be a nurse, I literally cried for days. Today, we are still vigilant and still shocked at how many allergic people we encounter who don't take the allergies seriously.

Please, don't spend the rest of your life regretting NOT carrying or having your child carrying their Epi... take it EVERYWHERE, EVERY TIME! 

I was complacent.  My 14 year old daughter was complacent.  Eye-rolls and annoyed posture every time I asked if she had her epi-pen.  She doesn't remember her reaction when she was 2.75 years old and there have been many, many expired epi-pens since.  I used to say it was the best money I ever threw away.  Until this year, I got annoyed.  I was certain I had sent in an epi-pen in the fall for school.  The nurse sent an email to all delinquent parents of food allergic kids.  "Your child's epi-pen is expired. Please send in a new epi-pen."  I received this in December and then again in February, finally in March, annoyed, I called the nurse and said I am certain that I sent in a new epi-pen in the fall, could she please double check.  She did and I was wrong.  I called in a new prescription, walked the dog in the woods and then came home to get ready for the day.  I check my phone at 10:00 a.m. and there are two phone messages...one completely unintelligible message from my daughter.  The second from the school nurse explaining that my daughter had had an anaphylactic reaction, she had used an epi-pen, the ambulance was there and please meet it at the hospital.

 

This happened.  I was that parent.  Turns out my daughter has added allergies to shellfish and ibuprofen, possibly dropped peanuts and is maintaining tree nuts and mangos.  Lesson learned for all of us.  I don't have to ask my daughter to carry her epi-pen any more.  I carry an epi-pen even though I know she has one at all times.  

 

Twelve years went by with no events after her initial diagnosed reaction. Twelve.  Then this year, she had two reactions in one month before we knew what was happening. Carry your epinephrine.  

 

As the mother of a son with an anaphylactic alergy to corn I can't stress
the importance of carrying the epipen at all times even when food intake is
not planned. He has been tested thoroughly and his only allergy is corn so
we know if he has a reaction then corn was present and his reaction occurs
within seconds. We walked into a small hospital for a pre op appointment
and we weren't inside for more than 3 min. and he had his worst reaction
ever (the 7th one that year-corn has a nasty habit of hiding). We used our
own 2 epi pens and 3 more in the ER. I am now more cautious about any new
environment and insist at all times that he has 3 epi pens with him. We
never did find out what was the source at the hospital as the staff though
it was something he ate in the car and that it wasn't possible for the
hospital to be contaminated. We even have to travel with our own toilet
paper as this is a major source of corn contamination. We still need to
find some that has zero in it if anyone has a suggestion. CARRY YOUR EPI
PEN!


On Mon, Jul 14, 2014 at 11:37 AM, Kids With Food Allergies
wrote:
Kids With Food Allergies
A Division of the Asthma and Allergy Foundation of America
4259 W Swamp Rd, Suite 408, Doylestown, PA 18902
Phone: 215.230.5394 | Fax: 215.340.7674
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