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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: 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
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.
 
 
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: 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.