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.

 

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!

 

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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!

 

chips-843993_1920 pixabay didgeman

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!

 

Food Allergy Help for Hurricane Harvey Families August 30, 2017

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Families just like ours need help.  They find themselves in the path of Hurricane Harvey and many are without resources.  Not only are many thousands of people evacuated from their homes, but those who remain will likely not have access to supermarkets or deliveries as roads and commercial buildings will be effected for days or weeks.

 

The folks at the San Antonio Food Allergy Support Team posted an update today about how to donate food allergy-friendly food to those in southeast Texas.  Monetary donations are the best way to make an immediate impact.  And, food allergy-friendly donations, particularly those that make feeding children easier, are greatly appreciated.

 

Here is Allergy Shmallergy’s link to Emergency Food Allergy Donations on Amazon.  I will continue to update this list throughout the upcoming days.  This is just to get us all started and is, by no means, an exhaustive list of needs.  Feel free to send your families’ favorite allergy-friendly foods, but remember that it should be shelf-stable and not require refrigeration.

Emergency Food Allergy Donations
Link: http://a.co/129iX7e

 

Please read below for details.  And, remember: there are MANY excellent organizations that need assistance now.

 

Thank you in advance: Your help is appreciated beyond words!

 


From the San Antonio Food Allergy Support Team:

[Post updated Wed. 8/30 at NOON CST]

Texas was hit very hard by Hurricane Harvey.

Many of the people who have been evacuated from the Corpus Christi area are already here in San Antonio. We have some evacuees from Houston, but are expecting thousands more.

If you’d like to help food allergy families, here’s how…

The San Antonio Food Bank is coordinating food efforts to help ALL of Texas hurricane victims right now. San Antonio is clear and sunny and having no issues with roads closures or mail delays (unlike Houston).

San Antonio Food Bank
FOOD ALLERGY FRIENDLY
5200 Enrique M. Barrera Pkwy
San Antonio, TX 78227-2209

(210) 337-3663
Info@safoodbank.org
Mon-Fri 8am-5pm
https://safoodbank.org/

The information on the “Hurricane Harvey Emergency Response” pops up on their main page…scroll down to see all options.

•Folks can donate “MONETARY DONATIONS” and put in the NOTES section (at the bottom) that they want their donation to go to “FOOD ALLERGY FRIENDLY FOODS” – this may make the most immediate impact.

•Food allergy companies or donors can send “MATERIAL DONATIONS” food allergy products directly to the San Antonio Food Bank (address above) and clearly mark them as FOOD ALLERGY FRIENDLY – If possible, include a clear message that it’s food allergy friendly on the outside of the box, in the second address line, and on the inside of the box.

•Shipments direct from AMAZON: If you are sending allergy-friendly items directly from Amazon.com, you can enter “FOOD ALLERGY FRIENDLY ” in the “Address line 2” field for the address and include it in a “gift message” which would be inside the box, to help with package sorting.

*San Antonio Residents – You can donate food allergy friendly items to the SA Food Bank or the City Council Offices listed. Please clearly mark them as “FOOD ALLERGY FRIENDLY” inside and outside and if possible pack them in a sturdy box. You can sign up to volunteer at the SA Food Bank (you must sign up ahead of time).

FYI FARE and KFA/AAFA have blog posts with additional details. Enjoy Life and Sunbutter companies are already planning to send donations. AAFA is working with someone from the EoE community. If you happen to have a personal corporate connection looking to donate, please have them contact Chad Chittenden, Director of Food Industry Partnerships at cchittenden@safoodbank.org (210) 431-8313, but I’m sure he’s swamped and other organizations are already reaching out to companies.

–Susan & Selena — San Antonio Food Allergy Support Team (volunteer leaders & FA moms)

P.S. There are many other organizations that need general help (including the Red Cross and Blood Bank). Thanks to any of you who are helping in whatever way works for you. 

 

 

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.

 

6 Tips for Traveling with Food Allergies March 7, 2017

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Spring break is on the horizon!  Can you smell the fresh air already?  Are you mentally packing your bags? (I am!)

 

Here are a few tips when traveling with food allergies:

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  1.  Call your airline and inquire about their food allergy policy in advance.  Ask specifically about early boarding and in-flight announcements.
  2. Most airlines will allow passengers to board the plane early in order to wipe down surfaces (this includes seat backs, seat belts, tray tables and knobs, armrests). Be sure to bring enough baby wipes or antibacterial wipes (such as Wet Ones) to cover all the legs of your travel.  Again, ask about pre-boarding at the gate.
  3. Carry your epinephrine auto-injectors and antihistamines ON BOARD.  Do not pack these away in your luggage.  [*ALLERGY SHMALLERGY TIP*: Zyrtec makes dissolvable tablets which eliminate the worry over bringing liquids through security as well as anything spilling in your bags.]
  4. If you’re traveling to a warm weather destination, you’ll need to remember to keep your epinephrine auto-injectors at room temperature – even while enjoying the beach or pool.  Pack a cool pack (like this one) and an insulated bag (like this cute lunch bag).  Store the cool packs in your hotel’s mini-fridge (who needs a $15 bag of M&Ms anyway!?) or plan on ordering a to-go cup of ice to keep the medicine cool poolside.
  5. A hotel or resort’s food services manager can usually help you navigate menus.  On our last vacation, the food services manager had food allergies himself and was invaluable in hunting down ingredients and safe alternatives for our family.  Befriend this fantastic person!
  6. If you’re planning on visiting an amusement park, taking a hike or being similarly active, consider packing a backpack into your luggage (or use one as your carry-on!).  You’ll need to bring your epinephrine auto-injectors wherever you go – especially on vacation when you’re away from home cooking, familiar restaurants and local knowledge of hospitals and doctors.  Backpacks can make carrying it easier depending on the activity – simply slip the insulated bag into your backpack and go!

 

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Two more notes:

  • Airline travelers should bring their own snacks/meals on board flights to ensure their safety.
  • Refrain from using airplane blankets and pillows as allergen residue may reside there.
  • Bring a baby or antibacterial wipe to the bathroom to wipe down door  and knob handles.