Food Allergy Documentary

Discovery Channel Documentary

Did you get a chance to watch the Discovery documentary, "An Emerging Epidemic: Food Allergies in America"? If not, you can view the 53 minute show online when you get a chance. A word of caution: it is graphic and may not be appropriate for kids. I would advise parents to preview it first.

I do think the documentary was well-done, but it is tricky to produce an educational film for different populations. It is a great piece for adults directly impacted by food allergies. It is also a learning opportunity for those not directly impacted by food allergies. This documentary can raise awareness about anaphylaxis and the dangers of food allergies. It can educate grandparents, teachers, coaches, babysitters and others who may come in contact with people with food allergies. 

Eating out with Food Allergy

It is a hopeful piece. To hear teens and adults talk about how they don't let food allergies "define them" and that you can "overcome obstacles" is a wonderful message for parents and young people who deal with food allergies. It is a thought-provoking piece. Why is it that food allergy rates have doubled in children since the late 1990's? There has been much research into causes and treatments, but there is still a long way to go to determine why more people are allergic to foods and how to best manage living with food allergy.

I also appreciated the term "threshold" used in the documentary to describe that everyone with food allergy has a different level of tolerance. This makes sense to me as a way to specifically address food allergy to others like the school nurse, restaurant staff, the school cafeteria, or caretakers. Every person with food allergies has different needs and it is up to parents, and eventually the food allergic person, to articulate those needs to others. 

Dr. Gupta

A shout out to Dr. Ruchi Gupta who was interviewed in this documentary. She is a strong food allergy advocate in her roles as a doctor and a parent of a food allergic child. Thank you to FARE and Mylan for their support of this show. Education and awareness is the key to keeping everyone with food allergies safe. After you watch the documentary, I'd love to hear your thoughts in the comment section below!

Generic Epi Injectors for Allergic Reactions

 There is growing concern among those in the food allergy community about the rising number of epinephrine auto-injectors coming into the market. Now, you may remember that I expressed much excitement when Auvi-Q joined EpiPen as another option for people requiring an epi-injector. I liked the idea of choice and competition. I'm not going back on that, but with two more units ready to hit store shelves, we need to make sure that parents, teachers, school nurses, coaches and others are educated about what an epi-injector looks like and how to use it.

 To start, I'd like to direct you to a well-written post over at Kids With Food Allergies. "Important News about Epinephrine Auto Injectors", written by Dr. Angela Nace, of Jefferson University School of Pharmacy, clearly outlines the differences between the types of auto-injectors that will be available. I particularly appreciate the easy-to-read chart included in the report.

  
After you've digested the information by Dr. Nace, there are a few other things to consider:

• which epinephrine injector works best for your family?
• will you have more than one type of injector on hand?
• what are the out-of-pocket costs associated with each type?
• how will you make sure that care-takers are aware of the different types and how to use them?

One other thing to think about is that with the availability of a generic epi-injector, doctors and pharmacies may be obliged to give out the generic, depending upon insurance or the way the prescription is written. Be clear with the doctor and pharmacy about the type of epinephrine auto-injector you want.

Angela Nace is Field Coordinator for Experiential Education, Department of Pharmacy Practice, at Jefferson University School of Pharmacy. - See more at: http://community.kidswithfoodallergies.org/blog/available-epinephrine-auto-injectors-new-generic#sthash.Q0OaWZpA.dpuf

Angela Nace is Field Coordinator for Experiential Education, Department of Pharmacy Practice, at Jefferson University School of Pharmacy. - See more at: http://community.kidswithfoodallergies.org/blog/available-epinephrine-auto-injectors-new-generic#sthash.Q0OaWZpA.dpufAngela

Angela Nace is Field Coordinator for Experiential Education, Department of Pharmacy Practice, at Jefferson University School of Pharmacy. - See more at: http://community.kidswithfoodallergies.org/blog/available-epinephrine-auto-injectors-new-generic#sthash.Q0OaWZpA.dpuf

Angela Nace is Field Coordinator for Experiential Education, Department of Pharmacy Practice, at Jefferson University School of Pharmacy. - See more at: http://community.kidswithfoodallergies.org/blog/available-epinephrine-auto-injectors-new-generic#sthash.Q0OaWZpA.dpuf

Angela Nace is Field Coordinator for Experiential Education, Department of Pharmacy Practice, at Jefferson University School of Pharmacy. - See more at: http://community.kidswithfoodallergies.org/blog/available-epinephrine-auto-injectors-new-generic#sthash.Q0OaWZpA.dpuf

Food Allergy Reactions on Valentine's Day

Candy Heart Molds

A recent survey sponsored by Mylan Specialty indicated that as many as one in three parents report their children with life-threatening allergies have experienced anaphylaxis on Valentine’s Day. This scary statistic underlines the importance of talking to kids before this Thursday's holiday.

Pre-School and Elementary-Age Children- Parents should talk to teachers and staff early this week about special events planned to celebrate Valentine's Day. From classroom parties and crafts, to food sent in for school parties, peanuts, tree nuts, chocolate and baked goods may be prominently featured. Remind young children about your food allergy rules (no eating anything unless it's been approved, checking with a safe adult if unsure, etc.) and make sure they are aware that Valentine's Day may mean that things are different at school this Thursday. Consider role-playing as a way to help them feel comfortable dealing with specific situations.

Teens and Young Adults- While classroom parties may be less of an issue at the middle school and high school levels, there are important reminders for this group too. Sometimes friends exchange Valentine treats and it may be tempting for a young person to "try a bit". This age group is particularly susceptible to food allergy emergencies because they want to fit in...they don't want to feel different. Again, talk to them before Thursday about your food allergy rules (no eating anything unless the label has been checked, carrying their medicine at all times, etc.). 

Food allergy reactions have been linked to kissing, so if you haven't had THE CONVERSATION yet, talking to your teen about dating and kissing near Valentine's Day may be appropriate.

Heart-Shaped Cake Pan

A little planning (and talking) early this week will help you and your family enjoy a safe Valentine's Day this Thursday.

Is your child's school still celebrating Valentine's Day with traditional parties and treats?

EpiPen vs Auvi-Q...And I Mean That in the Nicest Way

EpiPen and Auvi-Q

We now have EpiPens and Auvi-Q's in our house. Of course this may not work for every household. It could be confusing for younger children to have two different epinephrine devices. It may be disorienting to some caregivers. But, for us, it works to have both. There are times when it's easier for me to fit Auvi-Q in my favorite small purse. 

Other times, the shape of the EpiPen works better. 

Size of Auvi-Q

But, what I most appreciate is having choice. EpiPen is celebrating its 25th birthday this year. While we've seen a few other devices designed to treat anaphylaxis over the years (think Twinject and Adrenaclick), we haven't seen any new innovation- until Auvi-Q came on the market last week. The shape is remarkably different than anything else we've seen and a voice talks the user through the procedure, much as a defibrillator (AED) does.

When I called my doctor's office earlier this week to ask for an Auvi-Q prescription, they said, "Would you spell that please?" A nurse called back a short time later to say that they had a training on Auvi-Q coming up in a few days and that they didn't yet have the prescription information entered in their computer. They manually called in my prescription to Target. 

I'm also sending in some trainers to the director of our school nurses so she can share it at next week's nursing staff meeting. It's important to tell schools, daycares, babysitters and others if you've got an Auvi-Q for your child as they may search for the traditional shape of an EpiPen.

Price of the new Auvi-Q has been a hot topic. Each prescription comes with two devices and a trainer. I paid $72.74 for my prescription that was covered by insurance. By comparison, I pay $48.43 for EpiPen. This time, I only paid $25 for Auvi-Q because I printed a coupon. The coupon can be used twice and offers a $25 co-pay for prescriptions covered by insurance, or $60 off for self-pay customers. Honestly, that is a greater price difference than I expected. Our new Auvi-Q devices don't expire until April 2014, but as our EpiPens expire, we'll need to decide if the extra cost is worth it to us.

We need companies like Mylan and Sanofi and we need independent inventors like the Edwards brothers to keep us informed and to bring innovation and choice. Until the day finally comes when we no longer need to fear food, bees, latex and anything else that may lead to anaphylaxis, there's room for pioneers and options.   

Auvi-Q Prescription

 Will you have both devices in your house?

Food Allergy Blogger Summit

Last week I had the honor of mixing with a great  group of food allergy educators and advocates in New York City.  Lauren Kashtan of Mylan Specialty hosted our event and we had the opportunity to hear from Dr. Ruchi Gupta and  Sloane Miller (Allergic Girl) in separate presentations. 

There is such a warmth and joy in meeting "in-person". We were 16 bloggers and food allergy parents who all "knew" one another online, but sitting together and enjoying meals and talking directly to one another really was, well...priceless. 

And, let's talk about those meals for a moment. Chef Kelvin prepared the most delicious dishes for us. Several in the group deal with their own food allergies, so the ingredients for each dish were clearly labeled and the servers were ready and able to make sure everyone got a safe meal. The salad was delish, the ribs at dinner just melted in your mouth, and the chocolate cake...well, it was simply a little slice of heaven. Food allergy families should feel very comfortable eating from Chef Kelvin's kitchen. If you've got a New York City trip planned, talk to Kelvin (kfernandez@thestrandnyc.com) before you arrive and let him help you plan a great meal at The Strand Hotel.

I took lots of notes during the scheduled sessions and I'd love to share the ones that jump out at me:

• EpiPen turns 25 this year. It was approved in December 1987. Isn't it hard to imagine managing food allergies without having EpiPen?
• Over 20,000 schools are participating in the EpiPen4Schools program.
• Chicago schools used the slogan, "We're Prepared, Are You?" when rolling out their EpiPen4Schools program. This was an effort to ensure that parents continued to send in their child's medications and didn't rely on the school to have it.
• "Anyone can be allergic to anything at any time."- Dr. Gupta
• "I will not eat for someone, ever." -Sloane Miller
• People with food allergies need to communicate (about their allergies) in a clear and factual way. Be firm in tone, without question and without apology." (This is also from Sloane.)
• Parents need to gradually allow their growing food allergic children to own their food allergies. They need to be given opportunities to speak to their allergists, to restaurant staff, teachers, friends and others so they have practice in communicating and feel comfortable doing it as adults. (This is what I took from Sloane's talk). 
• "We finally have better insurance reimbursement for food challenges," said Dr. Gupta. The hope is that this will result in more allergists conducting food challenges, the gold standard in food allergy diagnosis.
• 30% of anaphylaxis has no skin symptoms (hives, redness, etc.) (Dr. Gupta)
• Using an EpiPen is a hard decision, more so because we are aware of the chain reaction that follows- ambulance, hospital, waiting to see if there will be a bi-phasic reaction. We had a great (and sometimes emotional) discussion around this. We wondered, could there be an anaphylaxis hotline to help provide support?
• Everyone at risk needs an anaphylaxis action plan. Talk to your doctor to come up with a plan that works and then make sure that everyone is aware of the steps to take.

A huge THANK YOU to Mylan for sponsoring this event, to our speakers (including Ritesh Patel who conducted a fantastic blogging workshop), to The Strand Hotel (especially Chef Kelvin and his restaurant staff) and to  my fellow attendees: Caroline of Grateful Foodie, Ruth from Best Allergy Sites, Cybele Pascal of The Allergy Friendly Cook, Tracy from AllergyPhoods, Elizabeth  - Easy Breezy Life, Missy  - The Marketing Mama, Heidi - Brooklyn Allergy Mom, Jenny - Multiple Food Allergy Help, Libby from The Allergic Kid, Lisa from No Nuts Moms, Irene and Sarah - Get Allergy Wise,, ,  Kelly- Food Allergy Mama, Kimberly- The Food Allergy Mom, and Lindsey Steffensen - Frugal Food Allergies.

We'll always have the Rooftop...

Best Advice From an Allergist and Immunologist Specialist

Epinephrine

"Use epinephrine early and often," was the message from Dr. John Oppenheimer, an allergist and immunologist from UMDNJ. I recently had the pleasure of hearing Dr. Oppenheimer speak and I was struck by a story he shared. He told us that his wife asked him why he often shouts into the phone, "Use it! Use it now!" That's the urgent plea from Dr. Oppenheimer when a parent or school nurse calls his on-call service wondering if they should use an epinephrine auto-injector for someone they suspect may be having an allergic reaction.  

"Use it" means "administer epinephrine now".

I've been there. When my child has said, "My mouth feels itchy", or "I'm getting a hive on my lip," I've grabbed the bottle of Benadryl in one hand and the epinephrine in the other and watched closely. Who wants to stick a needle in a child and call an ambulance unless it's absolutely necessary?

According to Dr. Oppenheimer, use of epinephrine early in the anaphylaxis state may diminish the effect of late-stage anaphylaxis. He said that anaphylaxis is under-diagnosed and under-treated and he made it clear that the first line of defense is epinephrine, not an antihistamine, when an anaphylactic reaction is starting.

He shared that the triggers for anaphylaxis are Food (33% of the time), Unknown (25%), Insect (19%), Medications (14%), Other (9%, includes cat dander, latex, cleaning agents, etc.). 

For me, Dr. Oppenheimer's talk was another good reminder. One quarter of the time, an anaphylactic reaction has an unknown cause. An antihistamine is not effective at halting anaphylaxis. While no one wants to use an epinephrine injector, it is our best defense against anaphylaxis.

It is comforting to be able to reach an on-call doc in a moment of uncertainty and panic. Call your doctor if you have the time. If not, talk to your doctor now, so you have a plan in place if an anaphylactic reaction occurs. 

Updated Info on Auvi-Q Epinephrine Injectors

I have been informed that Auvi-Q will not be distributing their epinephrine injectors until the first quarter of 2013.

From the company's PR rep:

"Sanofi has been working hard the past two months to build ample supply of the device to meet the anticipated demand for the product and to help ensure nationwide distribution...manufacturing is occurring following FDA approval to help ensure that when a patient or caregiver does fill a prescription for Auvi-Q, he or she receives a product with an adequate expiration date."

For additional information on this new product, check out the Auvi-Q site. From there you can watch a demo and sign up to be informed when the product becomes available.

There will soon be an alternative to the familiar EpiPen...and this new one talks you through the injection process. Stay tuned.

Low Allergy Milk

Milk Safe for Milk Allergic?

I'll admit that I'm a little wigged out about genetically modified foods. For right now, my opinion is that I want it clearly marked so consumers can make their own choices. That said, I'm intrigued by the news of a genetically modified cow that can produce milk without beta-lactoglobulin - a whey protein to which some people are allergic.

Researchers were able to interfere with the RNA of a cow, that went on to birth a calf that doesn't produce milk with any detectable beta-lactoglobulin. (Said calf was also born without a tail, but researchers believe that is unrelated to the genetic modifications...still wigged out). Researchers will now watch to see if the genetic modification will be passed on through future cow generations.

Of course more research is needed and low allergy milk will probably not be found in grocery dairy cases in the near future. Read the abstract in the journal Proceedings of the National Academy of Sciences (full text copies may be purchased) and check out the article in the BBC that originally caught my attention. The ability to remove the protein that is causing allergic reactions is appealing to me as long as it is done safely and ethically. We shall see where this leads...

In Case You Missed It: September Food Allergy Blog Carnival

When I started this blog nearly five years ago, there weren't many of us writing about our food allergy experiences. I am now honored to be among the company of so many talented and knowledgeable bloggers. 

In case you missed the most recent Food Allergy Blog Carnival, head on over to the site of our September host, Grateful Foodie, and read up on what's happening in the food allergy world. Everything from recipes to the latest information on Auvi-Q to dating with food allergies can be found among the many and varied articles. 

Great work y'all!

Food Allergic Should Have Double Dose of Epinepherine Available

So the latest recommendation is that people with food allergies should be carrying two doses of their life-saving epinephrine. This is the conclusion of researchers at Children's Hospital Boston after a six year study. Dr. Rudders headed the study and says, "Until we're able to clearly define the risk factors for the most severe reactions, the safest thing may be to have all children at risk for food-related anaphylaxis carry two doses of epinephrine".

It was also discovered during the course of this research that many emergency rooms are treating food allergy reactions with antihistamines and steroids, rather than epinephrine. Rudders explains that "these findings may be due to lack of a universal understanding of anaphylaxis in the ED (emergency department) before 2006". She goes on to say that she hopes her study will move things forward in this area.

The entire study was written up in the April 2010 journal of Pediatrics.

New Injector of Epinephrine

The EpiPen® has long been the standard prescription for patients who may suffer from anaphylaxis due to food insect and other allergies.

Several years ago a new device for delivering epinephrine came out, the Twinject®. The advantage of this device was that each unit contained two doses. Patients have long been cautioned that epinephrine doses only last 15-20 minutes, so Twinject touted its advantage as giving the patient an additional back-up dose and more time to seek treatment.

Sciele Pharmaceuticals is soon releasing a new epinephrine device called Adrenaclik. It, like the Epipen, is a single dose injector. Actually it looks much like the EpiPen and the instructions for use are similar, although with the Adrenaclik, two gray caps need to be pulled off from either end, rather than one on the Epipen.

I wonder if we will see more of these auto-injectors? I wonder if that means the price will come down? It's pretty expensive to have several on-hand, isn't it? I did find documentation that states the EpiPen patent doesn't expire until Sept. 2025. I don't understand all the legalese on patents and generic drugs. Anyone else?

Food Allergy Reactions

Do you carry more than one dose of epinephrine in the event of an allergic reaction?

A recent study shows certain risk factors associated with the need for more than one dose. One surprise...a history of asthma does not appear to be one of those risk factors.

People requiring more than one dose tend to be younger and tend to present with wheezing, cyanosis (bluish/purplish tinge to the skin), arrhythmias (abnormal heart rhythms), nausea, vomiting and shock. Those who present with hives are less likely to require a second dose.

Check out the full abstract and think about whether more than one dose of epinephrine is right for you or your child.

New Epi Injector?

Have you heard that there's talk of a new method of injecting epinephrine to combat an allergic reaction? The long tubular injectors may be replaced with a device that resembles more of a card.

While I'd personally like to see no need for any type of epinephrine injector, a smaller unit that is easy to conceal would be better- especially for tweens and teens who need to carry their medication.

Stay tuned for more information.

Dey Introduces New and Improved EpiPens®

The next-generation EpiPen® Auto-Injector is now available. It has some new features such as needle protection before and after use to eliminate accidental needle pricks. I like that. It also has a new color- orange- and a new shape- oval- with easier to read instructions. Sounds good. Check out the full press release.

Food Allergy Family Fun Event and Expo

North Wales, PA, just outside of Philadelphia was the location for a fantastic event for families with food allergies. Yesterday's Expo featured singer Kyle Dine along with vendors, raffles, coupons and lots of free allergy friendly food. The highlight of my experience was watching my food allergic son and his non-food allergic sister enjoying chocolate lollipops they got from Premium Chocolatiers. Priceless. It felt so freeing to move among vendors where our WHOLE family could enjoy the samplings.

Some of the vendors we visited yesterday:

Whole Foods

Enjoy Life

Cherrybrook Kitchens

AllergyFree Foods

Pamela's Products

Sunbutter

Cookies for Me?

So Delicious Frozen Desserts

Angels in the Kitchen (e-mail: angelsinthekitchen@hotmail.com)

I.M. Healthy Soynut Butter

EpiPen®

Twinject®


A HUGE congratulations to Kids With Food Allergies for putting this event together. Great job!