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By: | AFAA CEO & Editorial Contributor
Lianne Mandelbaum is a mother and advocate in the food allergy community. Lianne runs the site, "No Nut Traveler", and has subesquently started a petition and movement that led to the introduction of S. 1972 that will essentially, if passed, require: stock epinephrine; require airline crew members be trained on how to administer stock epinephrine; and require guideline changes to food allergy policy for airlines.
Lianne Mandelbaum is a mother and advocate in the food allergy community. Lianne runs the site, "No Nut Traveler", and has subesquently started a petition and movement that led to the introduction of S. 1972 that will essentially, if passed, require: stock epinephrine; require airline crew members be trained on how to administer stock epinephrine; and require guideline changes to food allergy policy for airlines. On Monday, August 10th, 2015 FARE sent out an email to support groups nationwide calling us to action as a community to support Ms. Mandelbaums efforts. You can see the email below, as well as the downloadable template to fill-out and send to your state Senator. 

For those in Arizona it is as follows: 

Flake, Jeff - (R - AZ)Class I413 Russell Senate Office Building Washington DC 20510(202) 224-4521Contact: www.flake.senate.gov/public/index.cfm/contact-jeff

McCain, John - (R - AZ)Class III218 Russell Senate Office Building Washington DC 20510(202) 224-2235Contact: www.mccain.senate.gov/public/index.cfm/contact-form

Call to Action from FARE:

Background:  FARE has been working with Senators and Representatives to encourage improved airline policies with respect to food allergies.  We are pleased to report that Senators Mark Kirk (R-IL) and Senator Jeanne Shaheen (D-NH), along with Senator Mark Warner (D-VA) have introduced S. 1972, which includes the following provisions:

-a requirement that airlines stock epinephrine auto-injectors (EAIs) in all aircraft within six months;

- an interim requirement that the 1:1,000 epinephrine vials currently included in airline emergency kits be labeled for the treatment of anaphylaxis;

- a requirement that airline crew members be trained on how to administer EAIs; and

- a report to Congress by the General Accounting Office on current airline policies regarding issues including the extent to which airline food allergy policies are transparent and accessible,  the steps that could be taken to develop a model policy, and the incidence of inflight allergic reactions and administration of epinephrine.

Requested Action:  FARE is asking all support groups to send letters to their Senators asking that they co-sponsor S. 1972  Attached is a model letter. PLEASE PARAPHRASE THIS LETTER SO THAT SENATORS DO NOT RECEIVE MULTIPLE COPIES OF IDENTICAL LETTERS.  Please prepare two letters (one to each of your Senators) on your group’s letterhead (or with the name of the group clearly visible at the top and contact information at the bottom) along with information that supports who your group is, the geography you serve, etc..  In the body of each letter, be sure to insert the names of each Senator and the name of your support group (in the blank in the first line).  

If you are uncertain who your Senators are, please go to:

http://www.senate.gov/general/contact_information/senators_cfm.cfm?OrderBy=state&Sort=ASC

The mail to the Capitol is extremely slow.  In order for your Senators to receive your letters promptly, please email them to me and I will share with FARE’s Capitol Hill representative:

sriccio@foodallergy.org

We will bring your letter to the attention of each Senator’s office.  
If you have questions about the bill or this request, please do not hesitate to contact me.

As with the School Access to Emergency Epinephrine bill enacted in 2013, FARE’s chances of success in advocating for this legislation requires active involvement of all support groups.  Thanks for working with FARE in our efforts to make airline travel safer for individuals with food allergies.

We also acknowledge the important support of our coalition partners at AANMA, AAFA, and The No Nut Traveler, who have all also endorsed this legislation.  

Thank you all,

Scott
Scott Riccio
Senior Vice President, Education & Advocacy
Food Allergy Research & Education (FARE)
7925 Jones Branch Drive, Suite 1100
McLean, VA 22102
Direct: 703-563-3081 Cell: 202-341-5177 Fax: 703-691-2713
sriccio@foodallergy.org
www.foodallergy.org

FARE’S mission is to improve the quality of life and the health of individuals with food allergies and to provide them hope through the promise of new treatments.  Learn more at www.foodallergy.org.


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By: Amy Martin | AFAA Editorial Contributor
That day was the catalyst for all the days and mostly nights of research I would do, searching for an answer.
            I must have eaten too much, my stomach hurts, he said. My eyes darted to his plate and instantly I felt sick, too. His fruit was untouched. All that had been eaten was a couple bites of his sandwich.  Our instructions were clear and the same as always, One grilled cheese, cut in half with a side of fruit. He has a severe peanut allergy.  Same as always, we were assured it would be fine.  Clearly, it was not.  I gave my husband the look, then took my son to the hand washing station outside where we washed his face, hands and tongue as well as we could. 

            I made a quick stop at the kitchen to inform them we were having a reaction and they assured me it was impossible as they took proper precautions. I sat down to the table and realized the look meant eat all my fries in my absence to my husband.  Annoyed but preoccupied, I noted that my sons mouth had begun to bleed. It was swelling on the inside. A manager came by to again tell me they prepared his food safely (a conversation with her later revealed there were not peanuts near his food, only peanut butter. PEANUT BUTTER!!!) and to get my contact info for follow up later. 

            Our friends at dinner with us pointed out the hives popping up on my sons mouth. I told my husband that maybe I should inject him with his Epipen, which we keep with us at all times. We hesitated. (Not a mistake I would make again) Instead, we ran out the door and drove across the street to urgent care where they administered my sons first life-saving dose of epinephrine.

            As I contemplated if it was legal to wrap him in bubble wrap and lock him in his room rather than send him to kindergarten, as he was supposed to begin the following week, I decided that I could never trust anyone to prepare his food safely and therefore, avoidance was no longer the only viable option for us.

            As awful as that day was for us, as much as I loathe that restaurant and their carelessness that could have cost me my five-year-olds life, that day had to happen.  That day was the catalyst for all the days and mostly nights of research I would do, searching for an answer. I could not play defense anymore. It wasnt working. In order to stop living in fear of the next time, we needed to meet this food allergy head on.

 
 
By: Lilliana DeSantiago Cardenas | AFAA School Epinephrine Advocate & Editorial Contributor
With the passage of SB 1421 allowing school districts to provide stock general use epinephrine for emergencies it is important that we understand what this means.
Exciting times are here; our children are off to a new school year.  Unfortunately these are also times of anxiety and fear for many families. With the passage of SB1421 allowing school districts to provide stock general use epinephrine for emergencies it is important that we understand what this means.  Also what we can do while schools in AZ become more competent on Food Allergies, Anaphylaxis and how to help our children either with their own epinephrine or with stock.

  1. Most schools will not have stock epinephrine available this year.  By law they are only required to stock if funds have been allocated via the annual budget.  Schools may opt to purchase these through their own funds.  Check with your schools.
  2. Stock epinephrine should never take the place of your child’s prescribed epinephrine.  Bring your child’s prescribed medication to school, make sure it is not expired, label it clearly and provide clear and detailed information to all classroom teachers, aides, and any other adults that will work with your child during the school day on how and when to use it. 
  3. Be prepared and communicate, 504 Plans are essential if your child has food allergies that lead to anaphylaxis. They not only provide information and guidance on how and when to help your child, but it is a legal and binding document that is developed in agreement with school administration, teachers, and parents.   504 Plans also provide you the leverage you need to ensure that necessary accommodations are made in regards to food, medication access, and class room environment.  Also if there are violations to the 504 Plan it is much easier to take legal action and hold people accountable.  Some schools may challenge your child’s ability to carry their epinephrine if there is not a 504 Plan and information outlining your child’s condition and medication requirements.  Make sure you check in with your school administrator and nurse about this.
  4. Share training resources on how to administer epinephrine to all adults who work with your child: http://www.arizonafoodallergy.org/administering-epinephrine.html The thought of injecting epinephrine is scary for most people.  Ease concerns through education and practice with demos.
  5. Be a team! Work with the school as much as possible and understand that they are afraid too. Schools are set up to be educational institutions not healthcare providers so this is totally out of their comfort zone.  They don’t want to put your child in danger.  The more you work with them in a patient and respectful manner, the more responsive they will be.  They need to be educated on the issue, treatment, risks, and emergency management.  The more they understand that the danger is in the lack of responding vs giving someone epinephrine the more they will become comfortable and willing to help.
My experience working with schools for over 8 years on asthma, food allergies, and diabetes is that they want to help, but they don’t really know how.  They are scared and don’t want to get into legal troubles. They don’t want to hurt your child and they sure don’t want a tragedy on their hands.  Education and awareness is key and the way to achieve this is through collaborative partnership between parents, students and school.   

 
 
By: Holly Nace | AFAA Editorial Contributor
I was a young mother, with an incredibly sick child who was not being listened to.
I should have listened.

I knew there was something wrong with my young son.  Appointment after appointment I allowed myself to be quieted by a doctor that was sure I was over-reacting.

What should have been my breaking point was when we rushed to the Emergency Room with our little boy, who was in anaphylaxis shock. Only to return to our Pediatrician, one that we had researched, believed in and trusted with our little one's life, to be shushed again.  It was a freak incident.  "Don't let him have that food." He said.  I felt defeated.

I begged for a prescription for an Epi-Pen.  He said that my son was not big enough for one. My son was over 28 lbs and I was refused a life-saving measure that I felt we desperately needed.  I told them how the E.R. Doctor's said we had just made it in time. WE HAD JUST MADE IT IN TIME. My Pediatrician didn't bat an eye.

All of the memories, the helplessness, and the terror come back to me.  With what I know now, I am ashamed that I did not act sooner.

My young son looked like he was sick on more days than he looked healthy. I asked our Pediatrician if we should be wary of any other trigger foods.  I was extremely hesitant to try peanut butter. I even told our Pediatrician that if and when I had my little boy try peanut butter that we would be in the parking lot of Phoenix Children's Hospital. He laughed at me.  He laughed at me in that small room as I clutched onto my little man.

I was done. I was done being talked down to.  Being talked at, instead of listened to.  I was a young mother, with an incredibly sick child who was not being listened to.

The first visit with our new Pediatrician was for my brand-new baby girl's well visit.  My son was not even present and I told her just a snippet of our history with his illnesses. She immediately gave me an order for allergy testing and a prescription for an Epi-Pen.  I bawled into my new little girl's receiving blanket.  I was just so thankful that she listened, she cared. She assured me that we would figure out what was wrong with him, no matter what. 

I should have listened to the self-doubt, that there was something wrong with my child.  My intuition told me there was an answer.  I let a medical professional make me believe that I didn't know what was best for my child.  That I was overreacting.  I am my child's advocate, their champion, and mother.

My little man is allergic to over twenty-five different foods.  The majority of which were staples in his diet. He is indeed highly-allergic to peanut butter and I am thankful that I at least listened to the tiny voice that said we don't need to try that food.  I did listen.

 
 
By: Samantha St. Vincent, AFAA Event & Education Specialist
Have you ever had the experience where you're looking for something, but can't find it? That happened with his epi-pens. He didn't actually need them, I was doing my paranoid check. But, what if my son needed his medication and I couldn't find it?
Purses are now a black hole for all the things we think we might need. I have everything but the kitchen sink in my bag, and sometimes I throw that in just in case.

When I had to start carrying my son’s Epi-pens I became paranoid and would constantly check, double-check, and triple-check that I had his medications.

Have you ever had the experience where you’re looking for something, but can’t find it? That happened with his epi-pens. He didn’t actually need them, I was just doing my paranoid check. But, what if my son needed his medication, and I couldn’t find it?

Solution? A big, bright-red first-aid bag.

This bag wouldn’t get lost anywhere. It’s easy for anyone to see if I need his medications. I can easily switch bags without worrying about forgetting something.

Here’s a list of everything that is in the “allergy-bag” and why.

I have big pins that say “Epi-pen Inside”. I have one on the diaper-bag and one on his “allergy-bag”. This pin allows others to quickly identify which bag is mine if needed. If I am ever unresponsive, emergency-personnel will check my bag for identification. They will see the pin and quickly locate the allergy-bag, giving them the information needed to protect tadpole since he can’t advocate for himself yet.

The first thing I put in the bag was his epi-pens. No explanation needed.

How will they know the bag is for him? A current picture and information card. Update the picture periodically.

Your information card may have different information. Ours has tadpole’s full name, DOB, home address, emergency contact name and phone numbers (me, hubby and my mom), the name and number of his pediatrician and allergist, list of allergies and medical conditions, and a list of current medications and dosage information. The back of the card has some of his favorite things (ex. toys, characters, food etc.) I’m planning for the worst; I can’t respond and I need to trust emergency-personnel to care for my child until a relative or I can.

Tadpole has asthma so I carry his inhaler. Think of any other medical conditions that your child has and any items needed.

I carry the big bottle of liquid-Benadryl. Use a piece of masking-tape to write the dosage for your child on the outside of the bottle to avoid having to figure it out in a panicked situation. Update this information periodically.

I also carry Benadryl cream and Hydrocortisone. If tadpole breaks out in hives the Benadryl cream will help. The hydrocortisone quickly erases his eczema if needed.

Buy or make a mini-first aid kit. I have band-aids, Neosporin, and gauze pads.

The last item in the allergy bag is hand sanitizer so I can clean my hands before undertaking any mommy-operations.

Is it a big bag? Yes. But, let’s be honest, those of us who have children with food allergies will be spending the rest of our lives hauling around emergency medications, safe snacks and more.