This blog post is primarily geared towards parents of a newly diagnosed child with a food allergy or multiple food allergies. I’ve carefully gathered my food allergy resources here to provide information for an audience in mind that might be relatively unfamiliar with food allergies up until their child’s diagnosis. With that said, the info I share here can also apply to a number of situations and isn’t only applicable to the parents of children with allergies.
In case you aren’t familiar with my food allergy story, I’m speaking from my own experience of having grown up with a severe food allergy, and now as an adult with a severe food allergy. So while I’m not able to understand the perspective of a parent with a food allergic child fully, I am coming from it offering a different perspective having been the allergic child myself. I also want to acknowledge I have learned so much about living with my food allergy from my mom, who was a parent of a food allergy child (me), and I’m still able to lean on her when I need to for advice and to ask questions about my allergy when I was a kid, etc.
Lastly, I’m not a medical professional. I am sharing my own experience here and what I currently do and have done in the past, but I am definitely not trying to diagnose or give advice here to take the place of a discussion with your doctor. I’m so glad you’ve found Invisibly Allergic and hope you get valuable information from this post and my blog as a whole. I promise you’re not in this alone. Let’s get started!
Websites, Social Media Groups, Apps, and More
My Top Recommendations For New Parents:
- Allergen “Hidden” Names
- Spokin App
- The Itch Podcast An excellent podcast on food allergies by Payel Gupta MD & Kortney Kwong Hing of the blog Zestfull. Starting at the beginning with Episodes 1 & 2 would be my suggestion to anyone managing a food allergy. In Episode 2 they discuss how usually eczema in babies is often a sign of food and other allergies later in life, but also explain that there is no “one recipe” that makes a food allergic person. In Episode 40 they discuss media portrayal of food allergies and the harm and help it can do for adults and children seeing these and either getting misinformation or a beneficial and helpful accurate food allergy and treatment portrayal. I wanted to specifically link to these two helpful clips for children of positive representation that they linked in their episode notes:
- Inclusive Storytime Bookshop -while they don’t have a huge selection representing food allergies, they do have some & are an amazing resource for inclusive books for children
- Food Equality Initiative (FEI) & their free monthly online Free-From Magazine
- Nut-Free Bakeries & Restaurants List
- Food Allergy Research & Education (FARE)
- PN/TN Safe Food Finds Facebook Group
- Food Allergy Moms Facebook Group *there are many FB groups out there besides these
- Trader Joe’s Product Line (TJ Product Phone # 626-599-3817, M-F 6am-9pm PST)
- FDA Food Labeling Laws
- Canada labels for 11 allergens and has more comprehensive labeling laws than the United States. I’ve had a lot of luck buying Canadian products!
- Instagram has many food allergy accounts and disability accounts you can follow that are specific to a food allergy or more general. If you’re an IG user, a few to get you started are: @foodequality, @spokininc, @foodallergy, @nutfreementality, myself @invisiblyallergic, @teallivingblog & @freefromexpo
- AllerMate’s Children’s Food Allergy Products *this is one site I like, but many exist that sell medical alert bracelets, lunch boxes, stickers, apparel, and more
Questions To Ask Your Allergist
I have a blog post dedicated to my experience going into anaphylaxis at the allergist from intradermal allergy testing, and because of this experience, I am a big believer in avoiding any type of skin testing or allergy testing that involves putting the skin in contact with allergens. Often by the time you’ve come to my blog, you may have already done skin testing, and that’s completely fine, but I’ve found bloodwork is more accurate and I like that there isn’t a risk of a reaction, so this is my advice for allergy testing of any kind.
You can ask your allergist any and all questions, of course, but I have a few prompts to help. These are topics I’ve discussed with my allergists in the past:
- Can we develop a food allergy action plan together so I can reference it and know the symptoms of anaphylaxis to look for?
- When should I use an epi-injector vs. antihistamines like children’s Benadryl
- How much Benadryl to use for weight/age of child
- Are metal allergies linked with food allergies/peanut allergies?
- Is eczema common with food allergies? (The allergist can speak to IGE-mediated food allergies in children)
- Can you tell me about Pollen Food Allergy Syndrome (PFAS), also known as Oral Allergy Syndrome (OAS)?
- What are your thoughts on airborne food allergies and reactions due to cross-contact and trace amounts?
- Do you know that the current FDA food labeling laws don’t require a label if an allergen is on shared equipment as another food? If so, any advice on avoiding contamination, is this something you think will be changed in the future?
- Do you have coupons available for AVI-Q or Epi-Pen?
- With a [specific food allergy] in mind, are there any common medications you know of that I should avoid that contain the allergen?
Epinephrine vs Benadryl
I’ll speak a little bit to when I would use an epi-injector and my relationship with Benadryl. Like I said in the beginning, definitely consult your doctor/allergist on this and develop an action plan together to follow in the event of a reaction, but I’ll share my experience with when I use each. I do not use my epinephrine unless I am showing clear signs of anaphylaxis (where 2 or more body systems are involved), but I always keep my epinephrine on-hand and close by in case I need to use it. Reactions and symptoms can be very confusing, for both the person having them and the observer, but in my experience when anaphylaxis is actually happening you can often tell it from extreme signs, like blue lips or fingernails, struggling to breathe or speak, or facial swelling. I won’t go into full detail here about signs of reactions since your doctor and allergist can discuss this, but I do want to be clear that antihistamines alone can not treat anaphylaxis, so there’s a definite time and place for epinephrine and when in doubt, if you aren’t sure if you should use it but think you should, use it.
The below is taken from the Allergy & Asthma Network page on anaphylaxis, I wanted to list it since they provide examples of different body systems and what those can look like during a reaction:
Since epinephrine is adrenaline, not to scare you, but it can be dangerous to use in high amounts if it is not needed, so I always begin with antihistamines if the reaction seems mild enough and hasn’t come on and worsened quickly, and then I will monitor to see if it’s still worsening or if it seems to be improving. Anytime I feel a reaction coming on, my first step is to get my life-saving medication close and within reach. Ideally, I’ll have someone with me or can find someone to tell that I’m having a reaction so they can monitor me as well. In the media you may see people being portrayed with food allergies as having swelling with no other symptoms or having extreme symptoms but talking and walking through the reaction, when in real life, these reactions are spreading misinformation. In my experience, reactions are time consuming and can go on for hours requiring constant monitoring, and the effects don’t stop immediately. After a reaction, itchiness on my lip or slight lip swelling can continue on for days where I can tell my histamine levels are still more elevated than usual. This is why I go to such measures to try to avoid having a food reaction in the first place, because it isn’t a mild inconvenience and it can be deadly.
When I was a child, if I was showing signs of a potential food reaction, such as hives, itching, or lip swelling paired with no noticeable throat swelling or struggling to breathe, etc. I would be given Children’s Liquid Benadryl and be monitored. Back in the 1990s when I was growing up with my food allergy, my mom was basically told by physicians to give me as much Benadryl as it takes to slow down the allergy and to closely monitor for more severe signs and take me to the ER/call 911 if those begin. We now know 30 years later that drinking Benadryl isn’t the best option for severe symptoms, you’d want to use epinephrine if it escalated to including multiple body systems and was worsening and coming on fast. In the past when I’ve gone into an immediate care or ER for a reaction, they will usually give me a steroid shot instead of epinephrine and monitor me for a few hours to be sure I’m getting enough oxygen. Often I’m told to keep taking anti-histamines for a few days afterwards, and sometimes depending on how bad the reaction was, they may prescribe an oral steroid as well.
A lot of having a severe food allergy is a waiting game– waiting, monitoring, having your epinephrine on-hand, and using your best judgement if you need to get medical attention or call an ambulance. As an adult, I require 4 epinephrine injectors and need to keep these on me at all times, but I carried only 2 most of my life. However, when I went into anaphylaxis in 2013 at the allergist, they used more than 2 epi-pens on me and told me that had I not been there to take oral steroids, I would’ve needed to use more than the 2 I had with me, so they advised me to keep 4 on me at all times from that point on. I don’t like needles and never want to use my epi-injectors or get a shot, but when anaphylaxis is taking place, in that moment, I wasn’t worried about using it or the needle aspect, I wanted it because I knew it would help stop the reaction. I think this is common where there may be some needle-phobia going on around epi-injectors but truly it’s life-saving and may look scarier than it actually is.
Conversations With Food Allergic Children
I’ve said this in other posts on Invisibly Allergic, but it’s worth reiterating here– it’s important that children with food allergies know they’re allergic and understand the extent of their food allergy. I’ve said this time and time again but food allergies are a spectrum and some are more mild and others are severe and life-threatening. Regardless, an allergy can evolve and every reaction is different, so it is still good to have this transparent discussion with children even if food allergies are mild, so that in the event it escalates and becomes life-threatening they’ll know concrete actions and steps to take. A sad fact is, many children and adults with food allergies or anything that makes them feel different or self-conscious, they keep hidden. I used to feel a food allergy reaction come on at in Elementary school or Middle school and run to the bathroom alone without telling anyone what was happening. Well, later in High School I learned a statistic about anaphylaxis happening to people alone in restrooms, because people go there and feel embarrassed so they don’t tell anybody. After learning this was a common situation, I felt less alone, and I had the desire to put my pride aside and tell someone to come check on me, because I didn’t want to be alone in a situation where I go unconscious. All of that to say, if they’re at school, daycare, at a friend’s house, or in any setting where food or contamination of their allergen could be involved, having them feel comfortable asking questions and/or be aware of their allergen is crucial so they can remind people of their allergy and ask, “is there [allergen] in this” or communicate, “I’m allergic to [allergen]”. Also, making sure they understand the importance of telling people around them if they’re feeling signs of a potential reaction.
As scary as it can be for parents of food allergic individuals to let their kids go out into the real world and into various situations, it is necessary for the children to live as freeing as they can, and it can be done safely with minimal risks, such as accommodations, washing hands regularly, having them not touch their hands to their face, having medicine on-hand, wearing a N-95 mask, etc. Having conversations around food allergies and discussing the symptoms of a reaction can help them learn to advocate for themselves and communicate about their food allergy/food allergies effectively at a young age. I know as a kid I felt like my peanut allergy was my secret superpower because I knew I could smell peanut ingredients from far away and really easily. Due to this, I really harnessed that power and used my nose to keep myself protected by smelling food before I ate it and deciding for myself if I felt safe eating it. I remember thinking it was so cool that I could tell peanuts were likely not in something, since I smelled it and felt no reaction in my body. It wasn’t until I was older that I realized others could even eat peanuts safely. Even after finding that out, I knew that even if others could have it I never wanted anything to do with peanuts and preferred they be kept away from me.
Food Allergies in Daycare & School Settings
My family and I did my own version of managing my peanut allergy when I was in a K-12 public school system, and even into college, but nowadays it seems it’s a more widely discussed topic, which is wonderful! I do request accommodations now in my work-settings (and other setting as-needed), and I go into detail about both school and work in my post on Employer & School Accommodations. I wanted to elaborate on this topic a little more here with the emphasis on children with food allergies. If I were to go back in time and send myself to daycare, factoring in knowing what I know now about cross-contact and airborne reactions, I would request no peanuts to be eaten in the building and have it be kept peanut-less. It’s hard for me to advise accommodations for other children, since I don’t know their allergies inside & out, so that is why I’m using myself as an example here. My mom always sent me to daycare & school with peanut-safe food and snacks, and advised them on what I could eat and not eat, so that would remain the same.
I want to specifically call out and address food allergy discriminating and bullying by both adults and children. Unfortunately it seems to be a trend that when other people are unhappy about accommodations being made for someone with a food allergy, they get really vocal about it. This seems to be a common situation across all environments like work and within families, but especially I’ve experienced it first-hand where parents of non-allergic children are angry when their kid(s) can’t eat an allergen someplace.
Whether I show it outwardly or not in a situation, I still get offended and feel hurt when someone complains to me about my own food allergy being either a nuisance to them or in a round about way says it is exaggerated and fake. I’ve had to learn to accept that some people don’t understand and will never try to understand, and can be just plain rude and spiteful. I remind myself those aren’t the kind of people I want actively in my life, and the important thing is that the daycare/school/employer knows about the allergy, takes it seriously, and understands the severity and the medications required if an allergy is to happen (keeping those life-saving medications close-by.) Ultimately, not everyone’s going to agree about food allergies and not everyone will want to accommodate it. The good news is, you often don’t have to associate with those people. If they are offensive and not willing to accommodate or take an allergy seriously, it is a quick way to know you DON’T want to be around a person or business, etc. There are SO MANY people are out there who WANT to accommodate your needs, and you get to surround yourself with those people and places.
My food allergy is a disability, and mostly an invisibly one. I recognize that not all people with food allergies consider themselves to have a disability, and that’s because every food allergy is so different. Food allergies can’t be generalized. I’ve been in situations where other individuals with the same food allergy as mine have completely mis-understood my allergy experience, because they assumed my day-to-day experience was the same as their own. It goes both ways, too, just because I react one way doesn’t mean that’s the way it is for everyone.
Food allergies are a true spectrum and it goes from more mild to severe life-threatening, everyone is different and every reaction can be different. Regardless of your child’s severity level, ‘disability’ is not a bad word. The way I see it, it just means accommodations may be needed, and this should be normalized because likely all will have accommodations needed at some time or another. Not to mention, anyone can become disabled at any time. We all have different needs and that’s completely acceptable and valid. Let’s support people with disabilities and reliant on disability services and make sure they’re supporting the disabled individual. Right now, the disability laws in the U.S. aren’t even close to being as inclusive and supportive as they should be.
Cross-Contact & Contamination
Cross-contact is when one food comes into contact with another food and their proteins mix. These amounts are so small that they usually can’t be seen, and even a tiny trace amount of food protein can caused reactions in people with food allergies. For a long time I thought my food allergy was completely unpredictable and I couldn’t seem to get a handle on my reactions. This all changed when I learned about cross-contact at the food production level and learned about how relaxed our FDA food labeling laws are in the United States. I go into detail about this on Invisibly Allergic often, but I now call and reach out on products before eating them to find out about what allergens are in the facility (for me, I ask about peanuts only), and then I proceed to eat them only if peanuts aren’t present. If I start getting more relaxed and eating products with peanuts in the facility or on shared lines, I immediately start noticing more and more reactions. It’s amazing when food products and companies are allergen-free certified, it takes a lot of the work out of eating for me if the product is guaranteeing my allergen isn’t in it, but is a rarity. Although, it’s becoming more and more common where you see this happening! Labeling laws aren’t consistent so always thoroughly check to make sure you understand why they’re saying “allergen-free”, to help, I have a post on Misleading Food Labels. I also shared in the top resources section of this post the Trader Joe’s Product phone #. If you have a TJ’s grocery in your area, they have a very helpful product line you can call to learn about what allergens are in the facility of each product.
Next, let’s talk about contaminated surfaces. I may call this “cross-contact contamination” “cross-contamination” “contamination” and it can be referred to as a number of things, but essentially it’s when particles of your child’s allergen get onto a surface and a reaction occurs when no food or act of eating is involved. This is by far the trickiest part of having a food allergy, for me, because I can’t visibly see or know when something is contaminated at the particle level. Normally since I am so careful about vetting the food before I eat it, if I have a reaction, it’s likely due to a contaminated surface where I picked up trace amount of peanuts from who knows what, and touched my lip or accidently contaminated the safe food I was eating with my contaminated hands. Washing my hands regularly and wiping surfaces can help a lot to mitigate this, but it’s something to be aware of if you have a child with food allergies. Playgrounds, daycare, stores, and frequently touched items like toys, an iPad, a pacifier, and public items like library books, can all get contaminated, and you can see how the list is quite literally endless. I have a post on non-food products that contain allergens, and one on pet-related contamination as well for those of you with pets in the household. I advise to not to keep any known allergens in your house to limit exposure & contamination, this has always been key to limiting my allergic reactions and helping with avoidance.
Let’s Talk Oral Immunotherapy (OIT) & Tolerance Induction Program (TIP)
OIT can be a controversial topic in the food allergy community. I’ll break it down the best way I can. First, the cause of food allergies is unknown, there is no cure, and avoidance of the allergen(s) is the #1 way to “treat” a food allergy. From the American Academy of Allergy, Asthma & Immunology, the definition and explanation of OIT is as follows, “Oral immunotherapy (OIT) refers to the medically supervised therapy of feeding an allergic individual an increasing amount of a food allergen with the goal of increasing the threshold that triggers a reaction. The goal of therapy is to raise the threshold that may trigger a reaction and provide the allergic individual protection against accidental ingestion of the allergen. OIT is not a curative therapy and involves a long-term commitment over several months to years and possibly indefinitely.”
With that understanding, I personally have ruled OIT out for myself as an option, but I have no judgement towards other who have done it or put their children through it. I’m careful not to say, “I’ll never get it done” because who knows, but I’ve experienced more severe allergic responses after having multiple serious reactions, so my goal is to have the fewest amount of reactions as possible, and OIT doesn’t align with this. I’ve read many studies on OIT over the years and there’s also some speculation surrounding issues with reoccurring inflammation of the the esophagus. Overall, it’s pretty new and understudied, so I’m fine waiting for now until there’s more known.
I did look into getting OIT done in other cities and also where I live in Louisville, KY and all were interested in me participating since I do have such a severe allergy, but I got the vibe they were seeing me as “good data”. After having gone into anaphylaxis in 2013 from a very diluted and routine intradermal allergy test, I don’t want to give myself peanuts and risk more life-threatening reactions. Anaphylaxis was a traumatic experience and not to mention, it seems to be more of an option for kids rather than employed, working adults. The allergists offices explained that I would need to come in multiple days a week from 9-5 to do daily dosing of my allergen (peanuts), then remain there for monitoring. This lasts 5-12 months at least and usually longer, possibly even lifelong, and there was a chance I’d get the placebo.
Tolerance Induction Program (TIP) is something I only recently learned about in 2021, and seems similar to OIT but more individual and customized to the specific allergic person. For TIP they use the patient’s data and allow that data to inform the treatment plan. I am only seeing this offered in the California area right now, and could be wrong about that, but I am interested to see if this becomes more popular than OIT. Based on the few Instagram accounts I follow who do TIP, this seems to be preferred over OIT.
OIT & TIP
So, If I had an allergic child would I consider OIT or TIP? Yes, I would consider it, likely TIP since I like the individualized aspect of it. However, I think it’s important since this is a hypothetical situation, ultimately it would depend on that child’s food allergy– their reaction history and overall severity, and so on. Since every allergy is as individual as the person themselves, taking that person into consideration is crucial. Knowing my own body and my reaction history, I don’t want to try OIT or TIP at this time, but if I found TIP being offered near me I would absolutely inquire on it, and learn about it. I will say, you can see online that many people have had amazing responses to both, so I would say really educate yourself on anything like this and decide from there.
Allergy-Safe Snacks On-The-Go & Eating Elsewhere
It’s helpful to keep a safe snack on-hand at all times, this way if something doesn’t go as planned, you won’t be in a panic and without safe food. I know I get grumpy without food for a long amount of time, so this is crucial for me even as an adult.
While I don’t like cold weather, I have to admit it’s nice being able to keep allergy-safe snacks in my car without worrying about them expiring or melting! So if you live in a cool climate, you’re in luck in that sense. With younger children, you likely are already keeping snacks readily available, but when it comes to traveling and taking trips, I suggest to bring their favorite allergy-safe non-perishable food items and snacks so you don’t have to fully rely on whatever you can get at grocery stores located in your destination. This doesn’t mean you need to buy allergen-friendly pre-packaged snacks all the time, either, fresh foods or foods you already have around the house that can be taken with you in baggies or containers are just as good!
I used bring ALL my food with me when traveling if I was going by car, and same with bringing my own pots and pans and cutlery. It became a lot to manage and so now I’ve found a balance where I can often bring enough to hold me over for 12-hours or so if need be, and then I try to let that be it. If we’re going on a trip by car I will bring few of my regularly used pots, pans and cutlery from home, but try to keep it to a minimum and I bring my own sponge and dish soap so I can wash whatever I have and also whatever I didn’t bring that is at my destination. It really is up to your comfort level and what works for you and your family.
I prefer to not eat food prepared in other’s homes if they aren’t keeping their house peanut-less, due to cross-contact. I actually believe restaurants that don’t use my allergen are less risky, since the food in/out of the kitchen is more controlled vs. someone else’s home. If you have family and friends willing to not eat your child’s allergen or keep it in their home, it makes life easier and creates a less-contaminated environment. This is especially true around the holidays! Speaking of…
I think it’s normal to have a love/hate relationship with holidays if you have a food allergy or manage a food allergy. They can be so fun and a time to connect with others, but with them often comes food, and with food comes a chance of a potentially deadly reaction. You probably know deep down the accommodations that would work well for your child to be able to enjoy and partake in holiday traditions, so I urge you to listen to your intuition and feel confident in asking for the accommodations. Food allergies aren’t a one-size-fits-all so listing your needs based on what works for your child is important.
If you don’t get accommodated, it’s better to not risk a reaction. Eh, who cares if there is a family tradition that dates back 5 generations that requires your kid’s allergen? Things are constantly evolving and changing and accommodations can be made, and new traditions can be made! The point is to get together with one another, right? Whatever your accommodation requires is valid and can still be just as gratifying, sometimes even more gratifying than the original tradition! I personally love when events aren’t food-focused. While I do love food, I also have a lot of stress surrounding food when I’m outside of my peanut-safe home. Usually I will eat before an event or bring my own food to lessens the potential for a reaction, and in doing this, it allows me to more fully enjoy the holiday, event, company, and experience.
A holiday may look a little different now, and conversations with family and friends may need to happen, and if so, that’s completely fine! Like I said before, let’s normalize requesting accommodations because everyone needs them at some time or another.
For Halloween, I highly recommend following the Teal Pumpkin Project if you don’t already. It promotes raising awareness around food allergies and giving out non-food treats. They even put out a map each year where people can notify if they’ll have non-food trinkets out for trick-or-treaters. We do this each year for the kids in our neighborhood and city and have found the non-food options are more popular than candy a lot of the time!
Homeopathic Allergy Remedies
Growing up my mom was all about using homeopathic remedies. I grew up using all types such as arnica tablets, arnica gel, calamine lotion, papaya enzyme, acidophilus, Chinese medicine teas, acupuncture, various salves, the list goes on and on. There are many out there that are relevant for food allergy reactions such as rashes, itchiness, eczema, stomach aches, etc. and many of them I’ve found I respond really well to.
You still will want to make sure they come from facilities without the allergen you’re avoiding and don’t contain the allergen, but I’ve been told by multiple holistic medicine practitioners that I respond so well to homeopathic because my immune system is so hyper-sensitive (a food allergy literally is an over-active immune system) so a little goes a long way, and this feels accurate to my experience. I still use calamine lotion for insect bites, and try to take a more natural approach first before trying modern medicine which is usually much stronger and has more side effects. I’ve noticed I tend to feel the effects of all medicine more strongly, since I am sensitive, so it can be a double-edged sword since I often feel side effects, too!
Immunocompromised or Immune Disease?
According to Autoimmune Institute, food allergies are caused by, “A specific IgE-mediated immune responses to substances. An allergic reaction produces IgE antibodies, which attack the offending substance (like pet dander, pollen, bee venom, or peanuts). This triggers a release of histamine, causing immediate, severe, and often life-threatening reactions. The symptoms are usually experienced in the airways or on the skin in the form of anaphylaxis or hives.” Their site does a great job differentiating food allergies vs. intolerances, sensitivities, and celiac and more and has great graphics explaining each. But I still wondered, is a food allergy considered immunocompromised?
I have called myself “immunocompromised” before due to my food allergy. I assumed I was since it’s an immune response and I have been told by doctors it’s considered an “immune disorder”, so I thought those were the same thing. After doing some online reading on this from knowledgeable and authoritative sites like anaphyaxis.org.uk I still get confused on how I’m supposed to refer to my food allergy, but I guess saying “immune disorder” “immune disease” or “having an over active immune system” is the best way. Their website states, “An allergy is not a form of immunocompromise but an oversensitivity to specific triggers.” All of this to say, food allergies are an immune response in the body where the immune system is over-active towards ingredients that are generally harmless.
I have experienced my over-reactive immune system in many ways besides my food allergy, too. For example, I often have more extreme reactions to bug bites from mosquitos and spiders where my skin usually develops skin cellulitis and I have to go on an antibiotic in order to control it. Taking antibiotics and steroids I have to be cautious of, because my body reacts very strongly to them, and in the past I’ve lowered my immune system’s ability to fight off infections to the point where I’ve gone into a full body rash after taking an antibiotic and oral steroid at the same time. I’m also allergic to some metals, and develop itchy skin and a red rash after contact with certain ones. I have a tendency to have stronger reactions to vaccines, not necessarily meaning it will be severe like anaphylaxis, but I feel the effects of medications and viruses in a heightened way due to my immune disorder. You may notice this in food allergic children that overall they have a heightened response to things moreso than others.
The Many Forms of Epinephrine
Epi-pen and Avi-Q are no different than any generic brands of epinephrine in terms of their medical make-up, the difference lies in the size and convenience of administering. I have to say, the easier to administer a shot of epinephrine, the better, but if you can’t get a coupon to make the name brands more affordable, I’ve gotten the generic brand before. The generic version of epinephrine was larger and more complicated to administer, it essentially came with a long page of instructions and looked more frightening since it was basically a giant needle, but, it is still the same live-saving medicine.
Hopefully you don’t ever need to use the epinephrine, I view it as a tool to have in my toolbox but isn’t meant to be used regularly by any means. If filling your child’s prescription will mean not paying other bills, I suggest going for the generic version and just knowing that it isn’t going to be as intuitive to use, but that it’s still important to carry. You can read online or ask your allergist about studies done on epinephrine potency, I’ve read some studies where up to 2-3 years later “expired” epi-pens were tested and basically had the same full-strength efficacy. Since all epinephrine has a shelf-life of 1-year, if stored properly with no heat exposure, they could last well beyond that. I’ve read it is always better to use an expired form of epi-pen rather than no epi-pen. You could ask your allergist or doctor about this as well if you have epinephrine expired or expiring soon. Since learning this, I rarely dispose of my expired epi-pens now until it’s been a couple years. I will keep my most recent ones on me at all times, but keep the expired ones at home or take them with me when traveling in case I need them as backup.
I have almost always found coupons for epinephrine to make them either less than $25 or free, only one year my insurance wouldn’t cover it and I couldn’t get a coupon, and that is when I got the CVS generic version. If I can’t find a coupon online, I’ve emailed the brand directly, and talked to a pharmacist or allergist office to try to find a way to get a discount. It is ridiculous how expensive they are, and not to go on a tangent here, but it’s a similar situation as the rising prices on life-saving insulin that people need.
These drugs themselves aren’t new and have been around for ages, but big pharma companies slap a label on it and require insurance, and it is very angering how much of a profit they’re making when people are having to go without the medication due to the prices. It is worth looking into how the same pharmaceutical companies making an enormous profit off the rise in food allergies are spending their money and the little they do for the communities they’re making billions off of. With that in mind, I hope to see solutions and answers about food allergies coming from companies unaffiliated from these big business pharmaceutical companies, because I would trust they more likely have the allergic individual’s best interest in mind if it isn’t part of their business model to make money off of their suffering.
While I do take my environmental allergies seriously, I have to say that I take my food allergy the most serious. If there’s anything I want someone to know about me, it’s that I have a life-threatening peanut allergy, since it is my most severe allergy and could mean life or death if someone isn’t aware I have it and have epi-pens on me. I have a medical alert allergy bracelet I can wear for instances when I am alone, in case I can’t communicate my own allergy.
I do have some off the chart environmental allergies, so I try to overall be aware of my histamine levels just by observation of allergy symptoms. If it is high allergen season for my allergens, I will likely take Benadryl/anti-histamine before bed to lower my overall reactiveness, and will be sure to take daily medicine for managing my allergies to try to keep my histamines low. I prefer Claritin and chewable Alavert but everyone’s body responds differently!
Epinephrine Degrades In Heat
Speaking of medications being expensive, epinephrine degrades and expires in hot temperatures. Studies have shown even short amounts of exposure to heat can cause the potency to lower, and the label suggests keeping them at 66 – 77 degrees. Never keep your epi-pens in a hot car, and always keep this in mind in warmer climates. It seems the medication is not impacted the same way by extreme cold, based on this Allergic Living article, but since they are so expensive, I don’t like to take risks.
My solution to this is to keep mine in an insulin case when the weather is warm. There are many types available, the brand I use is FRIO and I have the type that you soak in water, and the water keeps the temperature stable. I discuss this in my post on attending fairs, festivals, and picnics. I will say, it’s never soaking wet but it will get things in my purse or backpack, etc. a little damp. It has never bothered me, but there are definitely plenty of different options available.
Welcome To The Food Allergy Community!
No one wants anything bad for their child, family member, or friend, but if there’s one message I want to spread through my blog, it is that food allergic individuals can live a wonderfully happy and full life with a food allergy! There’s so much in life to look forward to, and while food can be one thing, I have so many hobbies and other experiences I enjoy. My food allergy also makes me appreciate food in many ways I likely wouldn’t otherwise. I can really appreciate the simple taste of whole ingredients, and revel in the joy of eating a safe treat from an allergy-free bakery. I personally have been able to maintain a healthy and great relationship with food even with my life-threatening peanut allergy. I am an adventurous eater and love to try new foods and meals.
Overtime you’ll learn what food brands to avoid and which are likely safe, and food shopping will become a breeze and fun experience of finding new safe brands to try. You’ll still want to check the label and/or check directly with the company still to be sure nothing has changed, but often the allergy-friendly brands have an FAQ on their site you can quickly go to. A good rule of thumb you’ll hear about in the food allergy community is to check each food ingredients label 3x – once at the store, once at home when putting it away, and once before it gets eaten. You’ll be an expert in no time!
If you found this post helpful and haven’t read my other blog posts, I suggest going through them here. I do have a post specific to children describing food reactions that you may also like to read. Please feel free to contact me with any specific topics you want to see covered or any questions you have!