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By: Amy Martin | AFAA Editorial Contributor
Every year, summer break comes to an end and food allergy parents get anxious. Along with packing school supplies, we dutifully assemble emergency kits with antihistamines and epinephrine. In additio
Every year, summer break comes to an end and food allergy parents get anxious. Along with packing school supplies, we dutifully assemble emergency kits with antihistamines and epinephrine. In addition to the set (or two) we send off to school, we keep another set at home or for after school child care. Depending on insurance, these double packs could cost nothing…or up to $300 each.

Because of cost, many families are forced to make the choice to carry beyond the yearly expiration or to even go without necessary life-saving medication. In some cases, parents will even divide up a set of injectors despite the fact that the The American College of Allergy, Asthma and Immunology recommendation to always carry two in case one fails or a secondary reaction occurs.

For us, in addition to epinephrine, my son also needs a preventative inhaler which our insurance only covers under our incredibly high deductible. Nothing has ever punched me in the gut harder than when I realized I couldn’t afford my son’s medically necessary medications. Obviously, he could not go without, but what would our family go without in order to pay for them? With three epinephrine sets expiring at the same time and this new preventative inhaler prescription,  I had to find a way to minimize the cost. As medicine and insurance costs rise and coverage declines, I highly doubt we are alone in our dilemma, so here are some tips that worked for our family that hopefully help others.

1. Coupons

The simplest and most popular way to save is to use coupons found on the pharmaceutical company’s website or even given to you by your allergist. Both Epi-Pen and Auvi-Q have $0 copay cards which cover up to a maximum of $100. For those whose copays are under $100, the injectors can be possibly be free. Check your coverage to determine how many injector sets are covered.

2. Income-based plans through drug manufacturer websites 

Both Auvi-Q and Epipen have income-based discount programs that could potentially cover epinephrine costs for an entire year. Each company has different guidelines, so watch carefully. If you still struggle but don’t meet all the requirements, try calling. Sometimes customer service can assist you in your application and even let you know if an appeal filed after a denial would be accepted.

https://www.auvi-q.com/prescription-coverage 

https://www.epipen.com/en/resources/paying-for-epipen

3.   Samples from your doctor’s office

Doctors are wooed by pharmaceutical companies with a supply of samples to hand out to patients as they see fit. I personally have never asked or been offered epinephrine, but we have received asthma inhaler samples that have saved us considerable amounts of money. 

*All advice is based on personal experience. Your experience may be different based on insurance coverage and income. 

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Amy Martin is a gypsy at heart, with the soul of an entrepreneur and the real, everyday life of a wife, mom, realtor, blogger and food allergy conquistador. She guest blogs and volunteers for AFAA. You can check our her personal blog at www.barefootnpearls.com or find her on Instagram as BarefootinPearls.

 
 
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: Amy Martin | AFAA Editorial Contributor
My son's confidence soared during the process as the reality hit that something he touched or ate could no longer kill him.
"Mommy, I can eat ANYTHING here. ANYTHING!"  My six year old's eyes were wide with the realization that the grocery store, which had previously seemed so small because of restrictions due to a peanut allergy, was now huge with possibility. 24 hours earlier he had eaten the equivalent of 24 peanuts in his allergist's office after nearly 6 months of increasing doses of peanut protein and eventually peanuts themselves. Now he was free to eat anything at all in addition to his daily peanut maintenance dose of 8 peanuts. After much taste testing, chocolate ice cream with peanut butter swirls and Reese's cups became his favorite.

He struggled a bit at the beginning. Those first four months seemed to drag and I wanted to keep him in a bubble because each illness would force us to slow down and wait a day or two to increase his dose. Once he hit his first peanut though, I fell like we were suddenly on a freight train to our destination: freedom. One peanut was revolutionary, 3 peanuts meant we could try peanut M&M's, 4 peanuts we dosed with chocolate flavored peanut butter and at 5 peanuts he switched to regular peanut butter. 

My son's confidence soared during the process as the reality hit that something he touched or ate could no longer kill him. The change was huge and noticed by all. Our doctor even told me that we were going home with a different child than we came to Utah with and it is so true, in all the best of ways. I reflect back and realize my initial statements that this 6 months in another state would be but a blip in time by comparison to a lifetime of freedom, was true. We are one month post graduation and I can hardly realize how quickly it all passed. We are already back in Arizona and my son back in school. He continues to dose twice a day with a two hour rest period and if he were to eat an abundance of extra peanut during the day, he would also observe a rest period, but he still doesn't love the taste enough to taste more than an extra bite or two. In two more months, we will reduce to dosing once a day.

Every bit of stress in the beginning of our OIT journey was completely worth it for us. I would not hesitate again to choose the same path, the same doctor and the same timing. For our family, we did the absolute best thing. My son is seven years old and in a few years, or even months, will completely forget how sad and scared he had been when he suffered reaction after reaction before we chose to try OIT. All we ever aspired to was safety and normalcy for him and we have more than succeeded. 

Amy Martin is a guest blogger and volunteer for AFAA. She maintains her own blog detailing her family's journey navigating the waters of food allergies and OIT. You can read more at www.barefootinpearls.blogspot.com.

 
 
By: Amy Martin | AFAA Editorial Contributor
He has eaten his first peanut ... and his second and third, and well, today, he ate 4 peanuts.
"Not good." My son said, with a twisted face. After months of steady and incredibly slow increases, sometimes bumpy days and watchful nights…he finally reached the threshold to increase to his very first peanut. 

We did it. 

{I don't feel one bit badly about saying “we” because this is truly a family effort, even though my son has to be the one to ingest his poison, he couldn’t do it without us behind him every step of the way.

He has eaten his first peanut…and his second and third, and well, today, he ate 4 peanuts. Twice. Once in the morning and again tonight. Do you know what happened after he ate it? Nothing. 

I have cried every single time I have watched another OIT patient eat their first peanut; yet, on his day, I was all adrenaline, ready to pounce if need be, watching my contact-allergic child shove an entire peanut in his mouth. Everyone smiled and took pictures. As he announced his displeasure at the texture, everyone laughed and then….nothing. He was fine. All our work was paying off and I just witnessed it in all it’s glory.

Every day before had gotten him closer to where he needed to be, but now it is more outwardly meaningful. I am handing him whole peanuts to eat. No more liquid or powder, I know exactly what I am feeding him. At three peanuts, he was able to dose with Peanut M&M’s along with a good friend he has met through our weekly doctor’s appointments. The boys were so excited to buy red and green Christmas M&M’s. This week, when he increased to 4 peanuts, we decided to try flavored peanut butter. Next week, we will switch to plain peanut butter. 

Walls that once barricaded him and us from a normal life have begun to crumble. Today, he sat right next to his lifelong friend, who happens to live here in Utah, as the friend ate a PB&J sandwich. I ordered a grilled cheese for my son, despite the fact that there was peanut butter on the menu and teenage boys behind the counter who may not be as vigilant about cross contamination as I would like. We went to the grocery store and he got to pick out something as a snack that said “may contain” or “processed in a facility with peanuts.” So many new experiences!

When we began, his doctor promised us this life; a life that allows us even more freedom as we get closer to graduation. We put our faith in this doctor and this program and I can clearly say: it works. I have no doubt that even if some time in the next eight weeks we falter, we will not fail. I have said on the good days and the bad, before we even moved here and now, I will never regret making this choice for my son and our family.

 
 
By: Melissa Enos | AFAA Editorial Contributor
When you think of what you fear your child getting a hold of, what comes to mind?
Quick: Think of the question from a parent's perspective – what is dangerous to eat? When you think of what you fear your child getting a hold of, what comes to mind? For a food allergy parent, the answers might surprise you. Back in the early days of having a mobile toddler and the challenges that come with this milestone, I learned this lesson in the most interesting way. It was easy to protect my kid before he could crawl or walk. The only things he could put in his mouth were those that I put within his reach, right? It was great! Then he discovered the joys of movement, and…well…every parent knows the adventures that come next.

            We all know about the marbles, the building blocks, and anything else smaller than the diameter of a toilet paper roll. Being a good parent, I thought about those things as well. Maybe I was a little bit obsessive about it all, but better safe than sorry was my line of thinking. The funny thing is that even my obsessive nature didn't manage to stop all possible threats. One cold and rainy afternoon (translation: an afternoon with two young children bored out of their minds and wreaking havoc around every corner of the house), I finally managed to settle them down with a table full of paper and crayons. My little guy, being 2 ½ years old at the time, couldn't wait to follow his big sister's lead in creating a masterpiece. You can probably guess that I ended up pulling a crayon from his mouth not five minutes later. No big deal. At least I had to deal with that and not the two of them getting on each others' nerves.

            I never predicted what happened next, however. Just like one of those movies where the crazy dramatic action sequence happens in slow motion, I noticed my son reaching for a random cheese cracker that had been left on the table at some point. I practically dove over the table in an effort to reach the kid before that cracker made it to his mouth, thoughts of his severe reactions to milk products going through my head in torturous detail. Surely the characters from The Matrix movies would have been proud of me. Even better, I did manage to keep him from eating the cracker. I was so pleased with myself that I hardly even noticed the ache in my hip from having rammed it into the table when I landed.

            This was, for me, the moment when I realized that I truly am living a different kind of life now. I guess I kind of knew it before then to the point that I just made sure to give him only foods and drinks that were safe for him, but this is when the reality of it being much more than that actually hit me. Food allergies are so much more than just something I think about at feeding time. They're part of my family's life in every aspect starting with playtime, but I knew that soon enough it would be preschool, birthday parties, friends' houses, school, and everything else he might want to do. It was all suddenly as overwhelming as the day we got the list of allergies that affect my son to this day, and even more memorable to me than the actual diagnosis day. It was the day I realized this was a whole new way of life – not at all the one I had planned on for my children. When my son was first diagnosed at the age of 6 months, we were told there was an 85% chance he would outgrow everything by his third birthday. At the time of The Great Cheese Cracker Debacle, he was only 2 ½ years old. Maybe that was when I realized that things wouldn't be okay with less than 6 months to go before his birthday. I was living in a type of "temporary problem" denial that was shattered one afternoon when I dove over a table for a snack that's found on and under car seats all over America.

            Hard as that day was, it was also kind of liberating. I was finally free to put together a new life for my son and family – one that is safer, more realistic, and more inclusive of his unique needs. I was finally free to move forward and accept things as they are without the shadow of denial clouding my vision. I'll admit it's still tough sometimes. I wish the sight of a popsicle could make my little boy happy and not anxious, and I wish our entire kitchen didn't have to become a hazmat zone whenever someone spills a glass of milk. I wish this wasn't the reality of our life, but it is. It is our reality, and until it isn't, I'm finally at peace with this life.

            Moving forward in this new year, I resolve to take my acceptance one step further. The food that my son can have will no longer just be what we provide to keep him safe – it will become a central and integrated part of our entire family's diet. Our meals will be those that all of us can have and we will move on from simply providing a separate meal for my son. I guess that means a new adventure in learning to cook, but it's a good next step to take. Acceptance took quite a while in my case, but it's a great feeling, and a great opportunity to move past the fear and denial of those pesky cheese crackers.
 
 
By: Amy Martin | AFAA Editorial Contributor
I saw exactly how minute an amount of peanut could cause a reaction and because of OIT, I saw his body now accept it.
“I’m FINE!” my son said as I asked him for the 100th time if he felt ok. We were nearing the end of OIT Day 1. It was our long appointment, nearly 8 hours of increasing his dose of peanut protein every 15 minutes until he reached our goal of 2.5 mg or he reacted…whichever came first.  We would then be sent home with half of our final dose to give him ourselves, twice a day for the next six days. On the seventh day, we return to the allergist’s office to double his dose. In the absence of a reaction, we will continue to increase his dose weekly until he is eating 12 peanuts, twice a day and “graduate” after he eats 24 peanuts in a single sitting with no reaction.   

Our Day 1 visit was perfect. He reached his goal. Not only was it the first day of his journey to a safe life, but he was able to sit and play Minecraft all day, uninterrupted, with the except of the nurse squirting peanut-protein-laced Kool-Aid down his throat. His weekly, hour-long appointments never measure up to that first day in his six-year-old eyes.  

One evening, the week he was consuming around 1/200th of a peanut, he sprung a single hive and began clearing his throat a lot and had extra saliva in his mouth. I let his doctor know right away. We kept in close communication as the symptoms subsided within twenty minutes without treatment. The next day, he had no reaction at all. I had just witnessed his body adjust and overcome the poison being slowly introduced into his body! I shudder to think what would have happened if he were accidentally exposed to an entire peanut.  

Strangely, I am thankful for this very minor reaction. It wasn’t especially scary, but that is because he is given controlled doses that would be immediately reduced if he did begin having reactions. This was a small reminder that my son is crazy allergic to peanuts and that we are absolutely doing the best thing to protect him. Accidents happen. Cross contamination is real. I saw exactly how minute an amount of peanut could cause a reaction and because of OIT, I saw his body now accept it.  

Every day, every week, he is safer. My son, who has been afraid to touch playground equipment out of fear that there is peanut butter residue on it, willingly consumes micro doses of peanut protein every single day. He is dreaming of his OIT graduation and of all the peanut-containing foods he will no longer have to avoid. His body and his mind grow stronger with each dose. I’m constantly in awe of these brave kids. They are small warriors, who know far too much about life and death for their age, on a crusade for their freedom. 
Amy Martin is a guest blogger and volunteer for AFAA. She maintains her own blog detailing her family's journey navigating the waters of food allergies and OIT. You can read more at www.barefootinpearls.blogspot.com.
 
 
By: Amy Martin | AFAA Editorial Contributor
 "Adventure" became the word we used over and over to make it all seem less scary. Mostly for me. The kids were handling it better than the adults.
"We're off!" I told the kids as we pulled out of the driveway, a small trailer packed with all our necessities for the next six months in tow. “Everything is Awesome!” blasted through my speakers. I had been easily convinced by a fellow allergy mom in one of the OIT Facebook groups that if there were ever a time to move to Utah for treatments, it was now. My husband and I discussed it and agreed all the pieces were in place.  We were already selling our house to move closer into town, but had not yet bought another and my son was still young, just about to enter the first grade. He was totally on board for treatments and I knew as he got older it would be harder to convince him to both eat peanuts and to leave his friends.  

All the arrangements had been made and an apartment was waiting for us in Utah as well as our first appointment with Dr. Jones. I planned to homeschool while there so as not to endure the sicknesses involved with starting a new school. Excessive illnesses would prevent us from maintaining regular updoses. My husband would come visit as often as possible, but someone needed to stay home and keep our business going. "Adventure" became the word we used over and over to make it all seem less scary. Mostly for me. The kids were handling it better than the adults.  

Our appointments would be weekly, only to increase his peanut dose. First, he would be getting minuscule amounts of peanut protein in a liquid solution, then move on to peanut flour and eventually, actual peanuts. I would be administering the doses to him morning and evening.  There were rules to follow about proper rest afterward, when to go to sleep, making sure he had food in his stomach and not spacing the doses too far apart or too close together.  I knew these rules coupled with being a temporary single parent with two kids and a dog in a one-bedroom apartment would be a lot.

I also knew if we stayed in Arizona it could be years before a doctor there would offer OIT. I would spend all that time worried about accidental peanut exposures. We would be too stressed about a mid-air reaction to fly and visit family on the east coast. We would not be attending any baseball games. More than anything, I wanted to relieve the stress and worry of touching something with peanut protein on it for my six year old. I never wanted to hear, "Am I going to die?" from him again because he was reacting.

To us, this six months would be but a blip in the grand scheme of things, yet change our entire lives forever. 

 
 
By: Amy Martin | AFAA Editorial Contributor
On Facebook I found OIT and peanut allergy groups.  I read the good stories and the bad. I looked at pictures of children who had previously been admitted to the hospital due to accidental peanut exposure, happily pop a peanut m&m in their mouth. I saw kids with life threatening dairy allergies eat pizza and ice cream. Every photo made me cry. I could see the potential. I felt hope for the first time in a long time. 
“No! I don’t want to do it! Please don’t make me eat a peanut!” shouted my teary-eyed six-year-old son. I had not even gone into detail about what OIT entailed, but he gathered enough information to draw his own conclusions from what little I had explained.   

Since his anaphylactic reaction from a restaurant sandwich, I had been researching treatment options non-stop for my son’s peanut allergy. Of the few therapies available, this one fit our family the best. Oral immunotherapy (OIT) is the introduction of minuscule amounts of an allergen into the patient’s system, through ingestion, building up tolerance over time. There have been several studies and trials involving OIT over the years, but I wanted a private practice doctor. They seemed to customize the program to the child and go a little slower, thereby minimizing allergic reactions.    

On Facebook I found OIT and peanut allergy groups.  I read the good stories and the bad. I looked at pictures of children who had previously been admitted to the hospital due to accidental peanut exposure, happily pop a peanut m&m in their mouth. I saw kids with life threatening dairy allergies eat pizza and ice cream. Every photo made me cry. I could see the potential. I felt hope for the first time in a long time.   

First, I needed my son’s participation. Then, we had to work out the logistics since there are no board certified allergists offering this treatment in the state of Arizona. We knew we would need to fly for appointments or temporarily move, neither of which was ideal. One of the closest allergists was in Utah, Dr. Jones of Rocky Mountain Allergy.  He regularly commented in the OIT Facebook group and seemed to have a lot of patients in the group having great successes with treatment. He was also compassionate to what we as parents of kids with food allergies go through on a daily basis. I could tell he was someone we could trust with such an important job.   

I went to the Facebook group for advice about getting my son on board with treatment. I can only imagine how hard it is for these kids to purposefully eat their food allergen after avoiding it for so long. It is their poison. One mom of a patient who recently graduated from the program posted a video of her daughter completing her final challenge, eating 24 peanuts at once, after months and months of slow and steady up-dosing, and then launching into a victory dance. I played the video for my son who watched intently and in silence. He must have hit replay a half dozen times. Finally, he looked up at me and said, “I want to do this.”  From that point forward, it was on me to figure out how to make it work because he was more than on board, he was dead set on this. He was ready to stop being scared. He was ready to eat peanuts.