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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: Holly Marie | AFAA Editorial Contributor
Our time at Disneyland has proven to be one of the safest we've ever encountered. I count myself lucky that we are able to give him that experience as a child and that he can just truly be. Be a kid. See the magic that the world possesses.
Our mission as parents of a food allergy child is making sure he is in the safest and healthiest environment possible.

Our son is deathly allergic to Gluten, Arrowroot, Peanuts, and Tree-nuts. He immediately throws up upon ingesting eggs, apples, and beef. Other allergies that cause digestive distress include: shellfish and pork.
Disneyland with Food Allergies

Our time at Disneyland has proven to be one of the safest we've ever encountered. I count myself lucky that we are able to give him that experience as a child and that he can just truly be. Be a kid. See the magic that the world possesses. I can count the restaurants on ONE finger that we can go to in our city. And I know many of my fellow food-allergy parents know which one I am talking about- two thumbs up that they are now GMO free! At Disneyland there were multiple options for us to eat at as a family and until you live with food allergies you just don't know how special that really is.

MEALS

ADR (Advance Dinner Reservation) – cuts wait times down to 5 minutes(or no wait-can I get a high-five?) instead of the typical 40-50 minutes and get in to the Disneyland Park BEFORE it actually opens for the public. Rockstar Status. Can also get Character Meets done as well. We ate at the Plaza Inn(in Disneyland) and were able to take pictures with characters who came around to our individual tables. We ALWAYS bring a ton of dry cereal, baby food pouches, camelback water bottles(easy to refill), and rice-krispy treats. For dinner our MUST for every visit is Big Thunder Ranch Barbecue. Delicious, finger-licking good time. Drinks flowing(hello Diet Coke) in large mason jars, a live band(great for kids to watch), and all you can eat BBQ, corn, beans, and cornbread. Plus being tucked away from the crowds of the parades(during dinner time) is most pleasant-surrounded by cool pine trees.

FOOD ALLERGIES

Plus- if you have food allergies and you book two weeks in advance they are more than willing to accommodate you and will work to make sure your meals are safe and MAGICAL. They will order food YOU CAN EAT and ensure that your time is both safe and enjoyable.

Each time we have had the Head Chef of both restaurants come out and welcome us, letting us know that they are making our meal. Not having to worry about life-threatening food allergies? Now THAT is another reason that Disneyland is the Happiest Place on Earth.

You can also ask many of the fast service food stops if they are allergy-friendly. We always stop and watch the Star Wars Jedi Training and last year they did not have any safe options for us to grab(which is why I always bring more than enough food with us) BUT this year they had their own menu options for food allergies and the Head Chef cooked my son his food.

Or – save time and money and bring your own food. You can eat snacks while waiting to board rides; just be ready to store those snacks. See Fanny Pack.

RIDES

Road Map to Rides – Check height restrictions, make a list of which rides are a must. We bring wipes to quickly wipe down each the surface area-so simple I can do it in my sleep. My husband made a spreadsheet. Don’t forget about Baby Swap(Rider Exchange)! Hello secret path through Indiana Jones! Know which ones are Fast Pass and USE THEM. A lot of the kids rides have a large line and no fast pass… know which ones are height and AGE friendly for your family before waiting. Little known secret for tiny tots? The ride hidden behind the Splash Mountain Exit NEVER has a wait and is baby and toddler friendly. The Many Adventures of Winnie the Pooh. LOVED being able to ride that a couple times with two EXTREMELY happy little ones.
FANNY PACK

I’ve worn one in each adult trip I’ve taken. At first I’ve had a few snickers and a couple call outs BUT when they are asked to store their backpack in lockers after they’ve waited an eternity to get on a ride? Payback? Knowledge is power. You can ride EVERY SINGLE RIDE at Disneyland while wearing a fanny pack. The same sadly can not be said for the much cooler looking cousin, the back pack.

Snacks, Epi-Pens(crucial for us), Cell Phone, Keys, Tickets. BOOM. Always with you. Please remember to bring a ziplock bag to store your cell phone in and Epi-Pens(in the fanny pack) because you can AND WILL get wet on Pirates of the Caribbean, Splash Mountain(does that really need to be written?) and by a wayward toddler trying to “help” you with your water. Inevitable.

Babywearing & Strollers

Last year I forgot my precious LILLEbaby in the car(and it is a TREK to go back to the car) and goodness my back paid the price. Babywear for the WIN!

Strollers are necessary for babies or toddlers. Our baby and two year old took multiple naps throughout the day on our first trip to Disneyland. Plus we just “parked” our stroller outside each ride with about fifty of it’s stroller friends and never had a problem.

You can rent strollers but it is far easier for us to bring our own with allergies AND save some money while we are at it.

This past year we only used our stroller to get to the park and to get across large distances. But our soon to be two and three year old went all day without napping in the stroller so we parked it at the Haunted Mansion for 8+ hours. My little girl DID sleep in the LILLEbaby for two hours and we rode the train around the park and watched my husband and three year old go on a couple of rides.

FREE SOUVENIRS

Free Souvenirs – Get the Buttons – First Disney Trip, Birthday, Honorary Citizen of Disneyland, Family Reunion, Happy Anniversary, Just Engaged, Just Graduated, Just Married….there are even more from City Hall and any of the shops on Main Street. Ask a cashier.

Also get a Jungle Safari Map – just ask one of the tour guides. Speaking of Jungle Cruise. It is the FIRST ride we go on. Everyone in the park makes a BEELINE for Indiana Jones and we just grab our fast pass for Indiana(or rider swap-MUCH faster) and then get onto a boat for a hilarious ride around. Every single trip at Jungle Safari brings different jokes. Last year while holding the baby on my lap I forgot about a certain part that JUMPS out at you and nearly lost my marbles. Lucky that Emma Marie thought it was hilarious. Message me if that information is need to know.

CALL

Call Disney – Extremely friendly, knowledgeable staff and will answer any question! (714)781-4636.

Do you have any Disneyland Tips for our fellow food-allergy parents?

Please comment below and SHARE!




More Disneyland Information:

A Day at Disneyland: Tips & Tricks

Disneyland Trip: Toddler & Preschooler FAVORITES

Author:

Holly Marie is a mom to a toddler and preschooler, former teacher and high school coach. She shares the best parenting advice she can find. She continues to work hard at keeping a happy, healthy home. Come join the adventure in parenthood! www.ascuteasabugsear.com

Let me know if you have any questions-

Feel free to send an email to Holly Marie- AsCuteAsABugsEarBlog@gmail.com.

Twitter: AsCuteAsBugsEar

Facebook: As Cute as a Bug's Ear

Instagram: AsCuteAsABugsEar

Pinterest: AsCuteAsABug
 
 
By: Melissa Enos | AFAA Editorial Contributor
"When you feel like keeping your child safe and well-nourished at home is a full time job already, how can you possibly even think of leaving the city, the state, or even the country to take a family vacation?" 
It's vacation season!

The kids will be out of school for the summer before we know it. If a road or airplane trip is in your plans, you know that it is never too early to start preparing.  

When you feel like keeping your child safe and well-nourished at home is a full time job already, how can you possibly even think of leaving the city, the state, or even the country to take a family vacation? As a parent of a child allergic to multiple foods, I have been there and done that a few times already and have lived to tell the tale. Even better, my child has lived to tell the tale, and my family has some wonderful memories to share. This is what family vacations and family time is all about, after all, so the extra hassle is worth it. In the end, you will be glad that you did it. Some extra planning is always necessary, and once you do that, you will end up with a much happier and less stressful vacation. Here are a few steps to consider as a good starting point for that awesome trip:

Check with Your Airline Carrier

Every airline has their own policies for managing children and adults who have food allergies. The problem can be that they often pass out bags of peanuts or trail mix during the flight and this can obviously cause a danger to people who have allergies to these foods. Some airlines are more helpful than others, so it's good to check around and see the experiences that different people have had on different airlines. This could have a major effect on who you book besides just the cost of seats on the plane. JetBlue, for example, has a policy of not serving peanuts or tree nuts at all, however this does not mean that passengers boarding the plane will not have peanuts or tree nuts on them. United has begun a new policy of asking passengers who sit near the food allergic person to not eat foods with nuts in them. However, they have no way of actually enforcing this if the person chooses not to comply. Again, always read reviews, check experiences online, and call the airlines for specific policies before booking your flight. Once you have done that, make sure to talk with the staff on board the plane to make sure they are aware of your child's needs and to see how you can work with them and make sure that everybody has a safe and enjoyable flight. In these cases it works best to "kill them with kindness" instead of making demands. This is less stressful for the flight crew, less stressful for you, and also a good way to get your vacation started on a good note.

Plan Your Pit-Stops

So a road trip is more your style? It is for us! A well-planned road trip doesn't mean simply knowing what highways are clear at what time. Having kids in the car demands always having a toilet stop in mind anyway, so it helps to pair your planning with snack stops in places that have safe foods to eat. Call ahead, research websites, and know what's safe to order. That way, you're not left scrambling or wondering what your child can eat while driving an unfamiliar highway with the "I'm hungry!" and "I need to go potty!" chorus echoing from the back seat. If you reach a planned stop and the chorus has not yet begun, stop anyway. Trust me, they will end up needing to go, and they will want a snack. Your blood pressure will thank you in the end.

Book Your Hotel Wisely

So you've figured out how to get to your destination! Great! Now, what about your hotel? Many hotels have free continental breakfasts, and this is a great thing for many of us. Unfortunately, this is not such a great thing for children allergic to the majority of what most hotels offer. One thing my family has learned is to simply book a hotel that has a kitchen already included in the room. No, this doesn't mean an expensive suite. In fact, in my family we are firmly of the belief that the hotel is just where you crash, and the money should be spent on all the fun that goes on outside the hotel. At least a couple hotel chains offer rooms with kitchenettes at reasonable rates, Days Inn being the one that we tend to frequent. Besides offering a more safe and convenient way of feeding your child hot and nutritious food, a kitchen can actually save you money by having breakfast "at home" instead of going out. The practical mother in me also loves kitchenettes because they save me time. This means I don't have to wake up early to make sure everyone is ready on time to leave early to get to the restaurant (a great way to start the day frazzled when no one has eaten yet). We can simply have breakfast while other members of the family are showering, doing their hair, or getting dressed. It's a great way to sleep in and start the day with a more normal and familiar routine, and as hard as my family plays, this is a very good thing!

Communicate With Your Destination

Most popular vacation spots, especially amusement parks, have very strict policies as to what foods you can and cannot bring into the park. Most times, simply letting the attendant know at the gate is all you need to do. However, other parks, like Sea World, are much stricter. Sea world boasts their food allergy friendly menus and their ability to cater to persons with food allergies. Therefore, they are likely to suggest you talk to the person serving your food for food allergy friendly options. In our case, having a child with so many food allergies as well as food aversions, a complete meal that he could eat safely is simply not realistic to expect any park to prepare. I emailed the park weeks ahead of time to let them know of my situation, and after a few back-and-forth emails (where the staff was sure they'd be able to offer suggestions that could work), they finally wrote a letter for me to present at the gate allowing me to bring in my own food for my son. Although this is the most work I've ever had to do in communicating with an amusement park, I was very impressed with the way that Sea World handled my situation. They are truly making an effort to cater to persons with food allergies, and frankly if they had been able to offer something that would work, I would've been thrilled! It would've meant that I wouldn't have to carry food for my son, and that would've meant one less bag on my shoulder. The main thing to remember when working with any vacation attraction is to communicate with them in writing ahead of time to see what their specific policies are and how they can work with you. It is always best to take care of this before you reach the location in order to avoid any unnecessary stress (yes, lessening stress is very much a theme in everything I do!). The last thing anyone wants is to be stuck at a gate waiting to explain your situation to a manager when all you and the kids want to do is go play.

Make a List - And Check it Multiple Times!

There are many things that tend to get forgotten when we go on vacation - Epi pens should not be one of them! This, I'm ashamed to admit, is one mistake that I have made, and it was an expensive one. Sure, I checked my list before we left the house. I had the Epis with me when we got in the car. But after switching to a rental car at a family member's house before heading out on our road trip, the purse with the Epis was left in our family car. We ended up calling our pediatrician to have her call in a prescription for us to pick up at our destination. That was $300 we didn't want to spend right off the bat, but a lesson definitely learned. Make sure you know where your emergency materials are at all times, and check for them before you leave any car, restaurant, museum, park, etc.

Identify your Child

Take extra steps to make sure your child is safe in the event that he or she gets separated from you. If your child is too young to provide park staff with your contact information - and just as important, allergy information - make sure they are wearing that information on med alert IDs of any type that is convenient for them to wear. It's one thing for a well-meaning staff member to have your cell phone number to call with your child's location, but the same well-meaning staff member might also be tempted to try soothing your frightened child with a chocolate chip cookie while they wait. It's best to avoid this situation if at all possible.

Take a Deep Breath, and Know the Hassle is worth it.

Yes, this can be a lot of work. If, like in my case, your child's list of allergies includes most of the "top 8," the work can be even more daunting. All I can say in response is that it's worth it. If the thought of managing allergies is the only thing keeping you from making the decision to book that trip, I say go for it. There is enough that our children have to say "no" to when food and socializing is involved, the last thing I want is to tell my son that vacations and trips are on the "no" list as well. I can say from first-hand experience that all the trouble was worth it 5 minutes after walking into Disneyland when I got to see my little boy run into Pluto's arms. That first trip was scary to plan, but the more we do it, the more it becomes part of our normal planning, and the more grateful I am that I decided not to listen to my "crazy over-protective mom" inner voice.
 
 
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.